Thursday, November 10, 2011

Part 15 - The Bubble

Continued from Part 14

In this month in 1976, a Movie of the Week called “The Boy In The Plastic Bubble” debuted. This is going to date me – but here goes:  I remember watching that movie and being fascinated by the interaction of John Travolta’s character Todd and his parents and the fact that the movie was based on a true story.  It was about a boy who is born with no immune system and thus has to live his entire life inside a plastic room, a “bubble” in which everything has been sterilized and through the wall of which he sees the world while he remains protected.  

During the whole time that Dad was sick, my family and I created a kind of Bubble around Dad; it was sometimes a place where we were struggling, but sometimes it was a comforting place too.  We needed The Bubble in part because we were worried about Dad's immune system, especially after he had started chemo, but we had other reasons for it too.  We felt we needed to close ranks to protect Dad from everything - from Cancer and from having to worry about anything on The Outside.  Fighting this thing was a 24-7 job for all of us, and we needed The Bubble around us to keep us focused, to keep our eyes on the goal which was to get Dad better.

As far as I could tell, Dad liked us to be there in the Bubble with him; at one point he said, “One good thing about being sick is that I get to see my kids and grandkids much more often!”  We tried to make life as good as it could be for Dad for the time being in The Bubble; we talked to him a lot about things that we had planned and that we thought he would enjoy after he got out of rehab; two big things he wanted to do were to go to Barnes & Noble and to the movies.  Put those on the Revised Bucket List – check!  Dad was very excited about seeing his two dogs and, of course, about getting Foster the Cat as soon as he got home.  For entertainment in the meantime, we set him up with a portable DVD player in the rehab hospital, but his attention span was way too short for him to care about watching movies or even TV shows.  At night, when he was trying to go to sleep, he often said he wanted to watch TV, but after it had been on for only a minute or two he would change the channel or just turn the TV off.  My mom’s friend brought their greyhound Buddy for an extra visit, and Dad seemed to enjoy sitting with him in the sun in the courtyard of the rehab facility one afternoon.  It was all relative, though, and we were just marking time until Dad could get out of there and, even more importantly, until he was feeling better.

Dad with Buddy at the rehab facility
The daily therapy sessions continued; we tried to cheer Dad on and to point out even the slightest improvement in skill level, but he was nonplussed and non-impressed with his own progress.  “Big deal!” he said angrily after the P.T. told him that he had done a good job with his leg exercises that afternoon.  “A few weeks ago I could run 20 miles and not even be tired.”  It’s hard to argue with that.  

I’ve seen lots of things written about something called “Helicopter Parenting,” when a child’s parents are overly involved in everything going on in the child’s life, so much so that the child never learns how to fight his own battles or to become self-sufficient.  This was different, though, it was necessary for all of us to Helicopter around Dad to care for him, to ensure his safety, to get him the medical attention he needed, and – last but not least – so that we could just be together, in case on one not-too-far-off day we couldn’t.  

Dad, wearing his "Healing Hat" that his sister sent him after his surgery
Something that someone told me early on in my Dad’s illness was that each person in the family would probably deal with the crisis in a different way; as my friend pointed out, our roles in the family and our personalities had long since been established, and having a crisis to deal with wasn’t about to change that.  Something else I learned along the way was that we all had to take turns being The Strong One; being the Big Sister didn’t have anything to do with age – we all took turns being the Leader, the Captain, the Positive One, and, as well,  we all took turns in despair.

The Bubble was by invitation only, and it was an exclusive affair.  There was only so much room and so much oxygen in The Bubble.  Even close friends and extended family members had to watch us from outside.  I’m sure some of them felt like we were poor communicators or selfish or whatever, but we couldn’t worry about that then and I can’t worry about it now.  We did what we needed to do, and I am not for one second sorry about that.  We put all of our energy into doing whatever it took to take care of Dad.  Being with him was hard work a lot of the time; there was no reading a magazine or surfing the Internet when we were with Dad.  The neurological damage left him with no regard for safety, and, not to belabor a point, but, simply put, he didn’t sleep.  Almost at all.

It was hard NOT to think about Cancer and to be alarmed and afraid about the future around him, although, at least for me, being away from him was much, much worse.  I needed to be with him as much as I could arrange, not for his sake or for my family’s but for my own.  I loved talking to him, even when he was somewhat confused or forgetful; some of the things he said were so inspirational, some were very touching, some were heartbreaking, and others were just everyday kinds of conversational things, but I loved them all the same.  I couldn’t bear to let myself imagine how it would be if things didn’t go our way; I was convinced that we would beat the odds, however we had to go about doing it.  There in that Bubble, we were so exhausted, and scared, and desperate, but we were in this thing together and that’s what we thought counted.  

Tuesday, November 8, 2011

Part 14 - Missing the Boat

Continued from Part 13

In spite of the involvement of the many doctors and other health care professionals who were on the case at varying points along the way during the time Dad was sick, one thing that was consistently lacking in his treatment was any kind of quality professional emotional support.  Looking back at everything that was going on and considering the many concerns we had about Dad during those ten weeks, it’s really a no-brainer (pun intended) that some kind of psychological intervention should have been provided for him from Day One. 

As I’ve said, Dad had an uphill climb in many areas from the start of his illness.  First up: the neurological problems - the tumor that was so large it was causing an actual shift of the normal structures in his brain, the swelling around the tumor site in his brain, the damage that resulted from the minutes he went without oxygen to his brain after he stopped breathing during the MRI just after he got to the hospital, and the probable harm suffered from the two grand-mal seizures he suffered before he was put on heavy-duty seizure medications.  Next on the list were the pharmacological issues – that anti-seizure medication, the chemo (Ever hear of chemo-brain?), the massive doses of steroids, the out-of-control blood sugar issues that resulted from the massive doses of steroids, and, of course, the pain medicines.  Last but in no way least was the emotional stress that anyone with a devastating diagnosis would have, amped up exponentially because of the confusion and roller-coaster mood swings that come from the aforementioned (particularly, injuries to the frontal lobe of the brain and the steroids, both of which typically wreck havoc on one’s emotions).  Add to that the utter lack of sleep and the total loss of control that Dad had to contend with and it’s surprising that he was able to do any of the things that he did during the time that he was sick.  He was, simply put, tough and amazing beyond words and beyond belief. 

But, with all those strikes against him, all of which were absolutely evident to any trained medical professional who had access to his medical records, how in the HELL did each and every one of them miss the boat entirely with regards to such an important part of Dad’s treatment???  Knowing what the doctors knew, being fully aware of the seriousness - actually, of the incurability - of his disease, wouldn’t it seem like Brain Cancer Care 101 to bring in someone to address emotional issues? 

But it never happened; the doctor was definitely NOT in to provide that vital care – and that is something that unquestionably caused Dad to suffer.  For as long as I live, I will be angry about that and feel guilty that I personally didn’t recognize what should have been provided and make it happen.  Actually, I feel like there should have been a counselor or psychologist or social worker or SOMEONE with that kind of knowledge and experience to tell us what to do in many instances involving psychological concerns, to let us know what to expect in that area, and to help us be prepared to handle things better so that we could better care for Dad emotionally.  We needed to know how to talk to Dad about things like his diagnosis and his future.  We were just making things up as we went along, going on gut feelings but really without a clue as to what we were doing as far as giving him the emotional support that he so needed and so deserved.

Addressing tough emotional issues with someone with a terminal illness has got to be one of the hardest things a person can ever have to do, one that we don’t have any knowledge of how to handle and one that matters so much.  There are no take-backs, no do-overs, and no second chances when the hard, scary questions come up, and it was so utterly unfair that we were left to fly by the seat of our pants on this.  We could love him with all of our might, and we certainly did that, but we needed help with the rest of it.

The only time Dad’s mental health was touched on at all during the whole ten weeks that he was sick was by a neuro-psychologist who worked at the rehab facility.  My guess is that this guy is routinely called on to consult on all cases there, not just the brain tumor/terminal illness/neuro-related ones.  When he stopped by to meet Dad on the first day we were there, Dad liked him immediately, although - two truths be told - Dad pretty much liked everybody, and I think he was especially partial to this guy because the guy looked like a runner, although I have no idea (and neither, of course, did Dad) if he was an athlete of any sort or a Couch Potato who just happened to be tall and thin.

Dr. Neuropsychologist was nice, and I think he was good enough at his job; he just didn’t do enough in our case.  On the five or so occasions while Dad was in rehab that he spoke to Dad, he threw out some colloquialisms like “Rehab is definitely the place to get better!” and “You just have to find a New Normal!”  (***Side Note:  I cannot be held responsible for my actions if anyone EVER says “New Normal” to me again.  I DETEST that term!***At one point, he suggested Dad start writing about his feelings in a journal.  Um, hello?  He can’t write legibly because he has almost no sensation in his dominant hand, plus, except for having kept years of logs of running times, he is one of the least journal-y types of people who ever walked the earth.  Dr. N was just one in a long string of medical people who didn’t really know my dad, and, really, who didn’t care enough to do one single thing outside the scope of the job description.  I called it "watching the Cancer Channel;" these people evidently are ok with putting in their 8 to 5 and then going home without another thought about their patients - if they aren't at work ("watching the Cancer Channel"), to them, Cancer isn't real.  They leave the impact at the office. 

Just after our first visit to the radiation oncologist’s office, Dad started asking some of those tough questions, many of which surfaced and re-surfaced in the middle of the night.  Mom was left to field the majority of them on her own because she was with him the most.  She answered the ones she could and wrote down the others in the Notebook; Dad told her to what to write so they could ask a doctor about those things later.  When Dad asked for information from the Rehab Director, the guy answered some questions but left Dad hanging on others.  Many of them he answered incompletely ("You will get chemo but I'm not sure for how long."), and for some he used hard-to-understand medical terminology (“Let’s talk about neuroplasticity!”), both of which I felt were worse than not answering at all.  Mom made a new list of the leftover questions – things like “Can I get well?” - for Dad to ask the oncologist at the next appointment, which unfortunately was not scheduled to occur until Dad finished rehab and had gone to Duke. 

The second time Dr. N came to visit with Dad in the rehab hospital, he went into detail about what he assumed the treatment would be for Dad’s type of cancer, which was odd because at that point no one knew what the protocol would be, since we had yet to have the consult at Duke.  Regardless, though, I guess the guy was trying, and Dad appreciated having things explained to him by someone he for some reason liked.  Dr. N asked Dad if he was sad or depressed, and Dad - ever the “I’m Fine!” guy in front of the doctors - told him no.  (***Side Note:  Doesn’t that seem to like a Red Flag?  Who WOULDN’T be sad or depressed given what Dad had been told?***)

When Mom told me over the phone about the list of questions that Dad had dictated to her to go in the Notebook, a Red Flag went up for me; I felt like Dad was starting to get a true picture of the direness of the situation, and in a way it seemed like a good sign that he was moving past saying things like “I don’t have real cancer.”  But Mom also told me that Dad had gotten really angry that afternoon because he had lots of trouble when he was trying to type an email for his job.  So, “I’m fine” attitude be what it may, Dad was obviously suffering, and rightfully so.  I called the Rehab Director that night and told him we thought Dad needed medication and more intervention for anxiety and/or depression; his answer was that Dr. N had spoken directly to Dad just that afternoon and had been told that Dad wasn’t depressed.  Hmmmmm.  I am ashamed to say that I let the matter drop for awhile after that; we were juggling so many balls in the air, but that’s no excuse.  I put it on my ever-growing list of things to ask the Duke doctors about a week later and went back to plugging away at worrying about and trying to address the many other critical issues going on. 

Maybe it’s too much to have expected medical support on this, maybe the ball wasn’t dropped by them because that’s just not how the system works, and maybe I am just looking for someone besides myself to blame.  Maybe it wasn’t only the health care workers who missed the boat.

Continued here … Part 15 – The Bubble

Sunday, November 6, 2011

Part 13 - The Quest for Foster

Continued from Part 12

In between the flurry of things going on that second week in November, Dad stayed focused on adding things to his Revised Bucket List.  He had always been such a positive thinker, and overall that remained the same, despite the obstacles and the hardships. 

Another thing about Dad that was unchanged was his enjoyment of sipping a cold beer at the end of a hard day.  Even in the ICU after his surgery, he started asking each morning if he could have a beer that evening.  ("Just trying to plan ahead!" he said.)

What do you say in answer to such a simple request from someone who is dealing with such tragedy, someone who is putting forth such effort while suffering and struggling so much, someone whom you love so very much?  The term simple pleasure took on a whole new meaning as we campaigned first the doctors at the hospital and next the one at the rehab facility to get permission for Dad for drink one beer at the end of each day. 

All of them gave the same answer:  as long as it had been at least a couple of hours since he’d had pain medication, as long as he’d eaten something beforehand, and as long as we kept it quiet.  I never quite figured out why Condition #3 was an issue, but we figured whatever it takes and smuggled in the beer for Dad. 

Dad’s favorite way to drink beer was in a can, and he thought it was funny when we wrapped a brown paper bag around the can for concealment.  His second-favorite way to drink it was in a cup over ice, which was handy since we sometimes had to stash a can or two somewhere in his room for a while before Conditions #1 and #2 were met, which meant the beer was hot when it was time to serve it.  As a bonus, a cup was great camouflage, plus Dad loved crunching the crushed ice, too.  We often had to remind him that the nurses and nursing assistants weren’t supposed to know about the beer; several times one of them came into the room while Dad was drinking his nightly beer.  “How’s it going?” one of the male nurses asked him one night.  “Great!” Dad said.  “I’m just drinking a beer!”  The nurse got a shocked look on his face and said, “You’re kidding, right? We don’t allow beer in here!”  Before Dad could give the answer that was sure to be completely honest, I said, “Oh, he’s such a kidder!”  The nurse laughed and went on his way. 

By far, Dad’s favorite kind of beer was Foster’s; he loved the big blue oil can that it came in and thought it was cool that the alcohol content was higher than a “regular” beer.  He was happy to have his wish of getting a beer each night granted, but he was thrilled when that beer was a Foster’s. 

Plotting to get his daily Foster’s became a major mission of Dad’s during this time.  In fact, as we drove up to the rehab hospital on the day Dad was admitted there, he spotted a Super Wal-Mart across the street from where we parked and commented that it would be so handy for us to run across the street after supper at night to get him a Foster’s.  ("Just trying to plan ahead!")

On the night of the third day after we got to rehab, my aunt stayed with Dad while Mom went to get the contraband.  Bad news:  Super Wal-Mart wasn’t that Super – they didn’t have a single oil can in the whole store.  Mom drove up and down the street in search of a Foster’s, but to no avail.  She bought a Bud Light tall-boy instead.  Dad was grateful to get that, but he wasn’t happy when Mom told him about the shortage of Foster’s.  “I just can’t believe that they were all out of it!” he incredulously told my mom and my aunt, as if they were trying to pull a fast one on him for some reason.  My aunt later went to several other stores in search of the desired bounty and was told at several locations that the distributor in the area was running low.  “Huh?” Dad said when she told him the news.  “Why can’t they just make more??”

My youngest sister came to stay with Dad the next night and brought him two things that he really wanted, some chili from Wendy’s and a can of Foster’s that she had scored at a convenience store on the outskirts of town.  “This turned out to be a good day after all,” Dad told her.

Early the next day, I got a phone call from the scheduler at the Brain Tumor Clinic at Duke University:  Dad had been accepted into their program and was scheduled to be seen on the Tuesday and Wednesday before Thanksgiving.  Again, I cried tears of joy and speed-dialed everyone in the family to let them know the great news. 

Over the weekend, my younger sister and her husband spent time with Dad; some family members who saw the news on Dad's Care Page about the quest for Foster's had procured a few stray cans of Foster’s, and Dad was happy as he savored one while he watched the Auburn football game that Saturday.   

Running concurrently with his campaign for Foster’s beer was Dad’s quest for getting a cat.  This quickly moved to the top of his Revised Bucket List, and, around the time the area supply of Foster’s beer was running low, Mom agreed that Dad could get a cat.  Several of Dad’s sleepless nights were spent discussing what he should name the cat, and he finally settled on none other than the name of his favorite beer:  Foster. 

While my brother-in-law and Dad were spending some Male Bonding Time (“binding time,” Dad always called it) that weekend, Mom and my sister went to look at cats.  One had been hand-picked by a friend of my mom’s; he fit the description of what we were searching for in a cat – not to old but not too young, calm enough to sit in Dad’s lap, and good around dogs and children.  They liked him right away, and he was ear-marked for Dad as soon as Dad got home from rehab.

That Sunday night, I called Mom and told her that my mother-in-law had bought a case of Foster’s that she had found in our city and that I would be delivering the beer to Dad when I got there a couple of days later.  “Great, great news,” I heard Dad say in response when Mom told him.  “That, plus the cat – I’m coming out pretty well this weekend.”