Struggling

Since my dad went on ahead almost two years ago and especially over the past year, I have been struggling with the fact that the way I see him in my mind is as he was when he was sick, but today when I happened upon a picture of myself helping him walk using his walker I was struck by the fact that he looked even more frail than I remembered.  So now I’m troubled by the fact that apparently I don’t clearly see him as he was well or as he was sick, although maybe the latter is for the better.  

It was excruciating to watch Dad struggle and to witness the physical and psychological effects of his illness as it progressed, especially because I felt that we had all but been promised that there would be improvement after he had gotten the "Magic Bullet drug," Avastin. My heart broke for Dad as I watched him struggle to grasp the severity of his illness, time and time again.  As long as I live, I will never forget the look in his eyes when he was struggling to get around on his walker one day not long after he got out of rehab and he stopped for a minute, obviously deep in thought.  I was holding onto the waistband at the back of his pants, and he looked back at me with tears suddenly in his eyes and said, "Am I handicapped?"  

"No, Dad!" I responded. "You've been through a lot, and you're having to work on some things, but you're going to get better."  I was so sure, and, from my perspective, so was everyone else around us, maybe not that he would be cured but definitely that his physical skills would improve with effort and with time.

But that didn't happen. He didn't get better; in fact, he got worse, and little by little his independence and then his life slipped away.  Or maybe I should say they were stolen, or ripped away from us, because saying they slipped away implies that we weren't holding on and fighting tooth and nail every step of the way, which we were, Dad included.

I don't think he realized that the end was very near for him those last couple of weeks; likely, the invaders in his brain - the cancer, the trauma from the seizure and the surgery, the chemicals in his body that collected as his organs were shutting down and could no longer filter out the toxins, and the array of medicines he was taking - clouded his knowledge of his rapidly worsening condition. I hope so - Dad didn’t deserve to be given a death sentence.  It was heartbreaking enough that the rest of us had to know what was coming down the pipe all too soon.  

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

New Orleans On The Mind

My dad loved New Orleans.  He thoroughly enjoyed the food, appreciated the people, delighted in the music, and, of course, he LOVED the Street Beer!

 

Dad, making a presentation to some of his clients at a meeting

When people asked Dad what he did for a living, he said that he was “in the grain business."  During his career, he managed several grain elevators, supervised the opening of a rice processing plant, and, in 1993, joined an agricultural marketing consulting firm as a principal commodities broker.

Not long after he graduated from college and got his first job in the field, he joined the Mid-South Grain Association, a trade organization for people in the ag-marketing business.

During the course of his career in the grain business, the Mid-South Grain Association was a constant for Dad.  He served as president of the organization for several years and was secretary-treasurer for the past 18 years. He was always so appreciative of the numerous friendships he developed through the group and enjoyed organizing their semi-annual conventions, one of which was always held in February in New Orleans.

My sisters and I and our spouses tagged along several times when my parents went to the convention in New Orleans, always a fun time for all of us and a good opportunity for us to see Dad “in action” with so many people he had known professionally and personally for years and in some cases for decades.

When Dad got sick in late October, he had just begun planning for the convention the following February.  He still had to line up guest speakers, get people registered, and coordinate with the hotel where the meetings were always held, the Royal Sonesta.  He had quite a long To-do list going, and this became one of the things about which he worried while he was sick.

After Dad was admitted to the hospital, while he was in the Neuro-ICU for several days awaiting surgery, he was on several different medicines, including a massive amount of steroids to address the swelling around the tumor in his brain and a type of pain medication that we later learned resulted more in increased anxiety and talkativeness than it did in pain relief for Dad.

My mom, my sisters, and I took shifts, often in pairs, to be with him 24 hours a day, and, as I’ve mentioned, we took careful notes about everything that went on.  One of the things we wrote down was what he said, especially when it related to things about which he was concerned. 

During those long, scary nights in the ICU, he talked endlessly, often about not feeling well, having a bad headache, and being very tired, all of which made sense given what we knew about what was going on with him medically.

Just a few hours before his surgery, he seemed to finally be getting some rest, but he kept talking in his sleep, saying things like “I’m bored,” “I’ve got to know when I can run again,” and “I don’t know why I have to be here.”  He also said some things that weren’t in context, like “I’m going to the oyster bar,” and “I’m going to eat a dozen.”  In between comments, he kept repeating a number that didn’t make sense to us, and, after hearing him say that same number over and over, I decided to use my cell phone to Google it.  It turned out that the number was the telephone number to the Royal Sonesta Hotel in New Orleans.  Apparently, he had New Orleans on The Mind.

Over the course of the next several weeks, we made lots of notes of things that Dad told us to write to complete the Convention-Planning To-Do List, and then we passed it on to someone else in a leadership position with the organization.  Dad still worried about it frequently, but we tried to reassure him each time he brought it up that it was being taken care of. 

After Dad went on ahead on January 5, Mom was asked to continue taking part in the convention and with the organization, if she felt up to it.  She had worked side-by-side with Dad for all those years in planning for and putting on the convention, and she definitely knew the ropes.  Because Dad was so concerned that the convention go smoothly, Mom felt that carrying on with that task was a good way to honor his wishes and to uphold his legacy in the professional realm.  She did get the job done, coordinating the planning for the event, and, with my husband and me, attending the convention to represent Dad as he would have expected us to do. 

I’m sure that Dad was watching over us during our time in New Orleans and that, although he might have missed being there, he was proud that we honored his commitment and that the show went on.