Knock, Knock!

On the next to the last day that my dad was on this Earth, I promised him that I would take care of my mom and my grandmother and my siblings, and I told him that we were so thankful to have had him to pull all of us together as a family.  And then, as I knew I needed to say for him, after all he had done for me all of my life, I said to him, "You can go. But you have to come back to me!" Dad, who had lain still for more than a day except for the slow rise and fall of his chest from rhythmic breathing, started stirring in the bed, moving around and kicking the covers in an agitated fashion.  Instantly I realized that he had heard me, and I was ashamed of the selfishness behind what I knew he thought I was asking him to do.  "Oh, Dad," I cried. "I know your body can't do it anymore. I know you are doing everything you can to stay here with us, but it's ok if you can't. You've finished the race: you've done everything you needed to do, and we will be ok."  He immediately settled down again, and I just sat there beside him, quietly crying, biting my lip to keep from wailing because I knew if I did that he would hear and be upset by that too.  I wanted to tell him that what I'd meant was that I hoped he could try to send me a sign, after he'd gone on ahead, and that he could come and be with me and the rest of the family later, in spirit.  I didn't tell him that, though, because I didn't want to risk causing him any more distress, and so I told myself that he would do it anyway, without having been asked, if he could find a way.

There are so many times these days that I feel him right here with me, and my sisters and my mom feel the same thing at times, too.  Sometimes I feel his spirit when I look up into the sky and see big white clouds contrasted against a blue sky - or when I see a beautiful sunset or sunrise.  Sometimes it's when I see or hear or even smell something that reminds me of him in such a strong way that it's impossible to ignore or overlook.  And sometimes the thing that makes me feel a connection with my dad is seeing a redbird, something that often happens at times when I need comfort or encouragement or when I just need something to make me smile and think more positively.  

My sister Nancy was the one who first commented that she had been noticing a redbird around her house and in other locations on a frequent basis.  After she said that, I started thinking about it and realized that I'd seen one around more often that I usually did, too. Other people in the family began to comment that they had seen redbirds in certain locations at different times, and over time it has evolved as a symbol of comfort and positivity whenever any of us sees a redbird.  

I sometimes think that Dad's spirit takes turns spending time now with each person he loved and watched over while he was here in this world.  If one or more of us are on the road, I think he's probably traveling along with us; if one of us is having a particularly difficult day, he's likely there to comfort us, often in redbird form.  

Yesterday morning, not long after I'd gotten to work, I checked my email and saw one in my Inbox from my sister Nancy's friend Suzanne, who, along with her family, has been having to make some very difficult decisions and plans as her dad enters into hospice care.  In the email, which Suzanne had sent to me and both of my sisters, she told us about something that had happened that morning as she was getting ready for the day.  Suzanne knew my dad and has heard us talk about the significance that redbirds have to us, and she has given me permission to share her words and a that photo she took:

I was getting ready in my dad's bathroom for a meeting at the hospice home. I was thinking about you girls and what you went through and how tough this all is. When I hear one knock at the window.  I think it's something to do with the storm. 

Knock again.  So I look, and this determined cardinal is there.  Going back and forth on the window.  Making sure I see him.  He only delivers one knock at a time .... but they are forceful.

Notice me!  I run to get my iPad to get the photo and capture the moment.  He knocks while I run away.  I take the photo and return to getting ready.  KNOCK.  

I turn around and say out loud, "Yes, I see you. And I know everything will be ok."

He knocks one last time and then is gone.  

And I have chills and an unbelievable sense of peace at the road we are about to travel.//

~Suzanne

Here is the photo she took - the redbird is in the bottom right corner of the window, looking in at her.

At Least

I know a lot of people who are competitive, but I think in some way I am the most competitive of all of them (ha ha, did you catch that???).

Early-onset competitiveness: that's me on the left, totally out-doing my toddler sister and my granddad at pull-ups.

That's why I've never been much of a fan of "at-leasts."  

I think it all started when I was about five years old.  I remember standing in my driveway one day, eating one of those red, white, and blue Bomb Pop popsicles, and being so sad when the last part of it dropped off the stick and fell onto the driveway.  My mom, who'd seen the whole thing happen, said, "Oh, well, at least you got to eat most of it!"  

But I didn't just want most of it, of course; I wanted ALL of it (especially the blue part at the bottom, which I still consider to be the best part!).  And thus began my distaste for the term "at least." 

Growing up, I remember hearing that term used pretty often, way too often for my taste, by both adults and by my peers.   I cringed inside when I heard other people say things like, "At least you tried!" and "At least we got some of what we wanted."  Every time I heard that phrase, I knew I should probably buy into that type of thinking; I realized that it was an expression of optimism and gratitude, but I saw it as settling. 

That has changed, though, since my dad got sick.  I guess going through the experience of caring for him during those ten weeks and then trying to cope with his death over the past couple of years has changed my view on at-leasts; these days I'm actually a pretty big fan of the term.  I hear it from the lips of others who loved him too - and from those who have also who've suffered through a similar experience, and I know we are in a club of sorts whose members know the true meaning of that phrase.  I've never liked consolation prizes, but I guess that's just another example of how tragedy and hardship hammer out perspective.  

I came across an idea shared by a fellow griever yesterday that made me think about my changed feelings for at-least type of concepts.  She said she would rather have had the person she'd lost and had to have suffered through living without him than never to have had that person in her life at all.  How profound.  

No Answers - Part 2: Informed Consent

Continued from No Answers - Part 1: The Oncologist

Besides the unresolved issues on my mind from when my dad
was sick that relate to the oncologist on Dad's case, another
thing that concerns me is the way that informed consent was 
handled when Dad was in the hospital.

Informed consent is the process by which a fully informed patient participates in making decisions about his own health care. It originates from the legal and ethical right the patient has to direct what happens to his body and from the ethical duty of the physician to involve the patient in the management of the patient's own health care through educating him about his condition and any proposed treatments as well as reasonable alternatives and the reasoning behind the physician's recommendation.  It also includes informing the patient of the risks and benefits of the suggested course of action and any other possible decisions after which the patient can use that information to either accept or decline the treatment.  

In cases when the patient is deemed unable to participate in this process, another person can be appointed to serve as proxy through a medical power of attorney or other legal process.  

When it became clear that my dad was not consistently oriented (i.e. he was confused about certain things) upon hospital admission, informed consent fell to my mom on his behalf.  According to the definition of informed consent, this meant that she was to be educated about Dad's condition and of the options for treatment and the advantages and disadvantages of each.  This is basic Medical Ethics 101, a process of which any physician - and certainly any surgeon - should be extremely aware.

This is where my question comes in:  Why was that process not followed?  

At admission, a neurosurgeon was assigned to my dad's case, and right away he started saying that a specific type of surgery called "debulking" needed to occur just as soon as Dad was stabilized seizure-wise.  We were never given any choice of neurosurgeon, and no alternatives to this procedure were ever presented to us.

Prior to the surgery, my mom, serving as Dad's medical power of attorney, was directed to sign the consent form that listed all the risks, but really she didn't have a choice in the matter - what was she going to do: not give the consent when we'd been told he needed the surgery to save his life??  We were 100% given the impression that the neurosurgeon on the case was the only option we had for whatever reason and that, without that surgery at that time, he would die, right then.

Later I learned that was not necessarily true.  The surgery 

could possibly have been delayed or maybe even avoided 

with no change in prognosis.  [When we met with the team of top neuro-oncologists at Duke later, we learned that the aggressive growth pattern of GBM meant that it doubled in size every three weeks and that, because of the time required for recovery after surgery before treatment could be started, since the surgery the remaining portion of the tumor had grown to almost half of what the size of the tumor was originally.  In fact, the Duke doctors said they felt there had been "very little surgical benefit" for Dad.] 

I know now that there were other surgical and non-surgical options that should have at least been discussed with us, if only to explain why they might not have been recommended by that particular neurosurgeon in my dad's case.  Because they weren't even mentioned, though, I don't know if they were viable options or not.  At that point, though, we didn't know there were any other choices and we weren't told any differently, and so we just went with what was presented to us as the only course of action.  And so I am left to wonder - why didn't the surgeon even consider trying other techniques that are frequently discussed as a treatment for brain cancer, those that are showing evidence as giving a better surgical and prognostic outcome - things like intraoperative stimulation mapping and Gamma Knife radiation?  Why didn't he bring up the option of delaying surgery to investigate the use of gliadel wafers (which are implanted to deliver medicine right at the tumor site) or to look at the possibility of taking a sample of the tumor for use either for testing to see if the cells were chemo-resistant or for an dendritic cell tumor vaccine?  

Back then, though, we didn't even know what questions to ask, or even that we should be asking questions.  We didn't think about getting a second opinion or doing a background check of any kind on the neurosurgeon, at least partially because we were told that time was of the essence.  I think we assumed that particular neurosurgeon was the best at that hospital or at least that he was the neurosurgeon with the first opening in his surgical schedule.  It seems crazy to me now when I think that I never asked how many of that type of surgery that neurosurgeon had done or how many patients with that same diagnosis were treated in that hospital per year.  [I later asked a nurse on the oncology floor how often they saw GBM patients there, and she said once or twice a year.]  I remember all too well that we were in such a state of shock and panic and so frantic to try to take care of and to protect Dad that we didn't have time to research things.  We just trusted the advice we were given and forged ahead.

These days, I have a note in my cell phone that lists things I want to remember if I am ever in a similar situation (Is that doomsday thinking or preparedness??  I'm not sure.).  It includes these statements:

*When a doctor (or other medical staff member) makes a recommendation, ask what else they considered or could have considered and WHY they came to the conclusion that they should recommend that specific thing.
*When making a decision as to whom (or to where) to turn for care, directly ask WHAT MAKES YOU DIFFERENT FROM OTHER DOCTORS (or what sets this facility or service apart?)? 
*ALWAYS ask what that person's (or that facility's) experience with that diagnosis, that surgical procedure, etc. is SPECIFICALLY, termed in frequencies and outcomes.

In my dad's case, though, without a doubt, we did what we knew to do.  The rest just wasn't something a person would know in everyday life.  Was the right choice made?  Yes, based on the options we were given at the time.  What would we have done, if we knew then what we know now??  Of course I will never know, nor would I if we had been presented with all of the possible choices and then given the opportunity to select one.  But at least in the "fully informed" scenario, we would not feel as if there were facts we weren't told or options that weren't considered.  Today, in the midst of my grief, I certainly don't feel that there was any effort at all by the medical team to try to individualize Dad's treatment, and I am left to wonder why we were only given certain information.  Did the medical team actually feel as if it were our responsibility to do the research and then to ask questions about the other possible treatments?  Did they have such as strong opinion about what the best course of action was that they didn't tell us what else could have been done?  Did they think we were somehow incapable of understanding the more complex information about other options?  Did they think we (or Dad) weren't deserving of knowing about those alternatives?  Did they themselves not know what else was available?  Did they lack the training in performing the other techniques?  Chalk that up to the list of things we will never really know.

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.