So Far Still To Go

One day last week I was driving home after a stressful day at work, and I started thinking about how I wish that I could call my dad.  There is so much going on in my life that I feel like I need to share with him, and the fact that I can't call him and ask his advice about some of it is still so hard to bear.  I could hardly finish the drive home through my tears.

I talk a lot about perspective, but I still have so far to go on this road.  I wish that I could feel that my time with my dad was enough; not feeling that way makes me feel like I'm not grateful or appreciative of the time I had with him or that I had him for a dad at all.  

Sometimes I still can't believe that what happened happened - and I can't believe that he's gone.  Damn I miss him so much.

"There is a sacredness in tears. They are not the mark of weakness, but of power. They speak more eloquently than ten thousand tongues. They are the messengers of overwhelming grief, deep contrition, and of unspeakable love." ~Washington Irving

Shifting Perspective in Grief

An article ran today in the Huffington Post's Healthy Living section that may be of interest to anyone who is grieving or even who knows someone else who is suffering from grief:

Griever's Gold: Cherished Memories

The advice given in this piece is reiterative of some of what I've written about in this blog, especially the way the author launches into her list by saying, "The following five techniques can help a griever shift perspective."

The insight about the way people who are grieving consistently indicate that they would not trade away memories of their loved one in exchange for having the pain of their loss erased is interesting, I think, a different kind of spin on the idea that, no matter how dire or tragic one's situation seems, it's always a wise perspective to realize that things could be worse.

I also like the way she talks about shift and how it tends to occur in grief over time; it's really quite incredible that way comfort seeps into our lives to help (not to heal, I don't think) with the rawness of the pain thrust upon us when we lose a loved one.

The third item on the author's list, "Share stories with other people," reminds me of the quote that affected me so much when I saw it hanging on the wall of the grief counseling center where I went not long after my dad's death: 

Every grief needs a thousand tellings.

Although this may not be true for everyone or in every situation, I have found the "telling" to be helpful in my own grief process.

And finally, the fifth item, "Give thanks for the gift of this person in your life," which is my favorite on her list because it is totally dependent on one's perspective: instead of feeling only sorrow and anger for the loss of a loved one, one can choose to be grateful and happy for having had him to love at all - and to have experienced the impact of that person AND to have the honor of carrying him forward.

Every time I see this portrait of my dad standing in the redwood forest, I think of the word "IMPACT."

Ashley Davis Bush, who wrote the article for the Huffington Post, is the author of a book about grief that I highly recommend: Transcending Loss - Understanding the Lifelong Impact of Grief and How to Make it Meaningful.

Open to Hope

Last fall, a blog entry that I wrote got published on a website called Open to Hope.

Click HERE to read the article.

A couple of days ago, I received an email from someone who had read the entry and had left the following comment:

I was so touched by your article and the statements from the other readers.  I am writing because my husband has a brain tumor, glioblastoma, perhaps what your father had.  This is heartbreaking for our twins age 19, away at college, and I am wondering if there are some things we should be doing now to prepare us for the special occasions, holidays and even just the really sad times when he is no longer here.  He is still fairly lucid and would be willing to do something to make it less painful for all of us but I would need to help him as his vision is very poor and he can no longer write legibly or use the computer.  We have come up with some gifts to give the kids from him when they graduate from college, get married have children etc, but there are so many other times in between the highlights of their life when they will miss them.  We had him with us this Xmas but it is unlikely he will be here for the next one.  We still have some time and I don't want to regret missing opportunities while we still have him with us. If you have any suggestions I would really appreciate it.  Thank you.

Wow, that's a tough situation and a difficult question to answer.  Knowing what a tough experience her family is having to go through is heartbreaking; it brings back so many memories and brings forth so many emotions from my own family's experience.  I want to help, but I'm far from an expert on the subject of coping; all I can do is to offer suggestions based on my personal experience and my perspective at this point on the timeline.  

I will tell her that my dad did have the same kind of brain cancer, glioblastoma, or "GBM" for short, an awful combination of three letters that brings devastation to people in a matter of seconds.  I will say that what I've figured out since my dad's death is that it is possible to pull out the silver linings of a terminal diagnosis; in no way does doing so diminish the pain and the hardship of going through it, but it does allow for opportunities to do some things that are very valuable, things like making memories, even just in the midst of everyday things, so that you can hold onto those (hoarding memories, as I have called it), things like helping the person who is sick tie up loose ends, and things like saying things such as I love you and I am a better person for having known you and thank you - and, eventually, goodbye.

A few books that may be of use in such a situation are Dying Well by Ira Byock, Final Gifts by Maggie Callanan and Patricia Kelley, and On Death and Dying by Elisabeth Kubler Ross.  I wish I'd read them in time to help my dad; written from a perspective of those who have done hospice work for decades, these books are full of information about what often happens when a terminal diagnosis is handed down.  

Something that I was surprised to learn after my dad's death is that there is a natural process that occurs as an individual nears death, and, while each person is unique, the dying process is nearly universal.  Many people find it helpful to know what to expect during a typical dying process. She can tell her husband that she is willing to discuss any concerns he may have or that, if he would rather have those conversations with someone else, she will find a person for him to talk to.  My dad asked me what I thought it was like to die, and, when I answered him, I tried to focus my answer on what I thought his main fears about the process were, which, for him, were related to pain and worries he had about leaving my mother and my siblings and me behind.  I don't know if what I said was right or not; I just knew that his distress needed to be addressed.  I can't imagine how scary it must be to have all those fears about dying and, even more so, to feel like you might inflict even more distress on your loved ones by voicing those fears.

But more than how to handle the logistics of her situation and the anticipatory grief and the emotions that come along with it in such a situation, this person is really asking two things: first, how can she help her husband emotionally as he prepares to leave this world, and, second, how can she help her children and herself, especially with regards to after he is gone?

First, let me say that, while the diagnosis of both her husband and my dad were the same, my family's situation was different from what it sounds like hers is.  My dad was "lucid," in that he could speak clearly and could understand the words that were being said to him, but he had fairly severe problems with his short-term memory and his attention span.  He was told by doctors that the prognosis was two years at best, but he was also told by them (and by us) that it wasn't unreasonable to believe that he could beat those odds, at least to buy more time.  There was a lot of denial by all of us, I think by the medical team too, about the fact that his time might actually be as limited as that general 1-2 year time frame, so much so that, coupled with the frantic pattern of caring for him 24 hours a day and the decline that happened so much faster than anyone would have ever believed, we didn't think much about those two questions while he was sick.  I wish we had; I wish we had had the time to figure some of that out.  All that to say, though, that what I have to offer in terms of ideas to address her concerns is from my hindsight type of perspective, not from what we actually did.  What we did do related to those two areas happened quite by accident.

I think it would be a good idea for her to talk to her husband about what his goals are from this point forward.  Like I've said in telling the story about my dad's illness, though, that Bucket List type of discussion is probably going be vastly different than it would be for a healthy person; the best you can do in such a situation is to come up with a Modified Bucket List to work towards.  Like my dad did, her husband is probably having to deal with medication schedules, doctor's appointments, and possibly some treatment plans.  Hopefully, though, unlike my dad, he has had less of a change in his physical abilities and his cognitive abilities, which may allow him to do some things like travel or even just socialize with friends and family without it being a major source of stress or a logistical impossibilty. Each person's goals are likely to be different, but clarifying them and putting them into some sort of order by priority and feasibility are important in any case.

There’s such a feeling of urgency when we are aware that time is short, and it can be overwhelming and stressful for a caregiver to feel like you need to fulfill every desire and help your loved one cross off everything on his to-do list in that limited time.  It's natural to want to make every day into a special event, but, as I have learned, very often the wishes of those who are very ill are much more simple than big vacations and major events.  I've heard of people hoping to be able to go to a family reunion, or to go camping, or to go horseback riding, or, like my dad, to go to a beach or even just to see a movie.  Sometimes even things like that require planning, and sometimes family members have to ask for help from others to make these things happen, but thinking in terms of lower key type of arrangements can give everyone something to look forward to and can serve as an opportunity for memories to be created.

That said, though, so many special memories can be created in everyday moments that sometimes it isn't necessary to plan something like a trip or a Bucket List type of adventure.  I have found that I am comforted by thinking back on the times my dad and I just sat around talking about the past or current events or funny things during the time he was sick; sometimes it's ok just to sit in silence and hold the person's hand too.  The everyday moments can be just as important as the big-deal moments; many times, just being present with the person who is sick can be comforting and meaningful for both of you.

In my dad's case, when he first got sick, we tried to view a day as A GOOD DAY as one during which he was able to do at least one thing he NEEDED to do and one thing he WANTED to do; later, when he was even sicker, in some ways I think we struggled to consider a day as a good day when he didn't have an overwhelming amount of pain (mostly headaches) and/or anxiety.  As we learned in a crash course, it's all about perspective.

People often seem to think that talking to someone with a catastrophic illness about their diagnosis or their impending death will upset that person more; however, from what I've been told and from what I've read, the opposite is actually true.  In fact, sometimes the person who is sick may be hesitant to bring up difficult topics like those with their family members for fear of upsetting their loved ones more.  But there are bound to be questions, and thoughts, and emotions that need to be shared, and sometimes a certain degree of peace can come from talking about those hard things or to admitting one's feelings about what is going on and what's going to happen.  The books I mentioned address how to broach those tough subjects in the most compassionate ways.  

In his book The Four Things That Matter Most, Dr. Ira Byock discusses what most people define as being the most important things to say before they die: "Thank you," "I forgive you," "Will you forgive me?" and "I love you." Two of the four phrases are about forgiveness, emphasizing how important it is to offer and receive it before we die.

I have heard that men and women have different types of end of life concerns.  Men seem to focus on finances ("Have I provided for my family adequately?") and things that are physically left undone at work and/or at home.  This was certainly true for my dad, and it caused him a lot of anxiety during the time that he was sick that only got worse as his condition did the same.  Women, on the other hand, seem to tend to worry about the emotions of their loved ones and the logistics of things, especially those things that they have taken care of for their loved ones, like gift giving and planning events.  I wish we had been able to address my dad's concerns directly in such a way that he could have understood and been comforted by that information, and I hope that is something that this woman is able to accomplish in her situation.

I love the idea of helping the person who is sick to buy gifts for people to be given at certain points in the future when he is not likely to be around.  I think that is likely to be therapeutic for both the giver and the receiver, and it's a very touching gesture that will comfort those left behind.

I also think she should have conversations with her husband about his goals for his legacy.  I think most people want to leave some sort of legacy in life; we all want to be remembered because being remembered means that our lives had meaning and significance to someone other than ourselves.  Maybe it's something he accomplished professionally, maybe it's something he did that will continue to impact people long after he's gone, maybe it's a character trait that he has that others can try to emulate, or maybe it's something else that he will be remembered for.  She should talk to him about how his legacy will be carried on in the future, even by people he doesn't know who have come into contact with the people who have known him (the "rippling" concept).  I suggest that she ask others in his life to tell stories about things they enjoyed doing with him, things they admire about him, things they will remember, and/or how he has affected them; as we found out after my dad died from comments made by many people who had known him, sometimes one's legacy is different than they or people who knew them in a different context may think.

I've heard that many people who are at the end of their lives tend to want to talk about their regrets, accomplishments, hopes, and dreams.  Doing a life review is a way to bring closure to the person who is ill, and it can also serve as a legacy of life to the person's loved ones.  There are several ways this can be recorded for posterity: 

*A MEMORY BOOK can be created in one or more different formats.  A simple photo album or a more modern version created online through Shutterfly or a similar website can be a wonderful memento.  A scrapbook can be made by using photos and other items like ticket stubs, menus from special dinners, or personal notes.  A book of memories can be completed by filling in information in a published book like THIS ONE or just by jotting down or dictating memories, thoughts, and ideas in a notebook a little bit at a time. 

*AUDIO TAPES can be a wonderful thing to leave to loved ones and may be able to be produced more easily and more privately than dictating for someone else to write down messages.  Loved ones often miss hearing the voices of their departed friends and family members.  By recording tapes for those they leave behind, terminally ill patients can know that whenever their survivors are missing them, they can simply pop in a tape and hear their voices.  I've heard of people who have recorded themselves reading favourite bedtime stories, singing lullabies, or simply talking for their children or grandchildren (or future grandchildren) to listen to later.  Tapes can be made for friends and family members, individualizing the messages for each recipient.  One thing I will say is that even though we didn't record my dad while he was sick, we have some recordings of his voice from before he got sick that are absolutely priceless to us.  

*VIDEOTAPES may be the ultimate way for the terminally ill to leave their loved ones with little pieces of themselves. Similar to the process for creating audio tapes, a video camera can be set up and turned on for the person who is ill and then the person can be given an opportunity to have his message delivered in private.  Again, different videos can be produced for each loved one, with the emphasis being on making them as personal as possible.  Parents who know that they will miss important milestones in their children’s lives can prepare videos offering the advice they had hoped to deliver in person. For example, a dying parent may prepare videos of themselves talking to their children about the importance education, being true to yourself, finding lasting love, or prioritizing the important things in life. More than anything, these videos should be used for the terminally ill to express themselves and the feelings that they have for those they will be leaving behind.  

*WRITTEN LETTERS (or those that have been dictated and then written on the person's behalf) can be used to offer kind words, to share advice, to provide encouragement, or simply to declare one's love for another person. Such letters are sure to be treasured and kept as special remembrances of a life that ended too soon.

It has been said that as long as one person holds memories of someone, they are not really gone. Losing a close friend or family member is one of life’s difficult realities, but most people keep their departed loved ones forever near by thinking back over the times that they shared. Creating tangible memorabilia can reinforce those memories, helping survivors to keep loved ones a part of their lives.

One more thing I'll share is a link to a website that has great info about how to cope with end-of-life issues for people with brain tumors:  BRAIN TUMOR HOSPICE.

In closing, I will say to the woman that, when faced with the most difficult situation that she has probably ever faced, all she can do is to try her best.  Accept help from others; ask for help when needed.  Keep a Notebook of thoughts, questions, appointments, inspirational quotes, anything that might be something she needs quick access to and/or that might be good to remember in the future.  Take photos of your husband along the way, with other people and by himself, maybe even of things like his hands or him facing away from the camera, to create memories in a visual format.  Make an effort to take note of everyday joys, don't be afraid to just sit silently and enjoy each other's presence, and cut yourself some slack and take a break on a regular basis.   

I am going to wait a couple of days before responding directly to her message, and I'd love to get feedback from others who have opinions about the subject of what else she may want to consider doing.  Please comment below if you have any ideas on anything else I should add!!

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.

Two Years Out

Have you ever run into someone whom you haven't seen in awhile and noticed that something about that person that you can't put your finger on has changed?  Maybe it was something so indistinguishable, so subtle, that you have even wondered if it was just your imagination, but still you felt that something was different about that person than it was in the past.  That's what grief feels like for me at this point.  It has changed over the course of the two years since my dad died, but it's hard to say exactly how.  Or maybe I have changed in how I address the grief and in how I cope.  One thing is for sure, though: it's still looming; it's not any less of a threat except for the fact that I guess I have learned a little bit about how to manage it.  

Part of me is shocked and even a little bit impressed (surprised?) that we've made it to the two year point after my dad went on ahead.  We've done it; we've helped each other through it and we've survived it, so far.  Some days, though, it feels like running the third lap of a four-lap mile around the track, which for me was always the most painful because I knew that I had to give it my all in that part of the race but I was also aware that there was so much work left to be done even after that lap had been completed.  Part of me is so shocked and so saddened by that fact that we're already at the two-year mark that just the thought that it has been that long since I've seen him immediately brings tears to my eyes.  Two years.  How did that happen?

I had a dream about my dad a couple of nights ago, and in it he was sick and he kept asking me, "How did we get here?"  At first, I thought he meant that he wanted to know how we had arrived in the physical location where we were, which was, oddly, sitting on a bench in a park that was not familiar to me (and certainly it wasn't somewhere that I went with him while he was sick), but then it dawned on me that he was asking how we had gotten to that exact point in time.  And then in the dream I turned to him on the bench with tears in my eyes and I said, "We got here because of your strength, your courage, your toughness, your determination, and your love, and we will never forget that."  I knew he want to know how he had gotten cancer and how it had gotten so bad so quickly, but no one knew the answers to those questions.  What I did know in the dream - what I wanted to convey to him - and what I do know in real life is that my dad is the reason that my family and I have had the fortitude not to crumble in the midst of the biggest challenge of our lives; time and time again, we have held him up as an example of how to face the pain of our grief, how to cope with the sadness and the anger that threaten to overtake the joy and the promise of hope for a better tomorrow, and how to look for the good on even the roughest of days.  That's how we have gotten here; that's how we've made it through these two years since he had to go on ahead.

But of course knowing that doesn't make me miss him any less; if anything, the passage of time makes me miss him more!

It's not just that today marks the two year anniversary of my dad's death that brings him to mind; I miss him all the time.

I miss how he and I could laugh over the craziest things, sometimes things we knew were ridiculous or even dumb but we thought they were funny anyway. 

About ten years ago, Dad and I drove from my house to the small town in Alabama where my grandmother lived to pick her up and bring her back to my house so she wouldn't be alone on Christmas.  It was about a 7-hour long drive each way, and we had a great time talking and laughing along the way, just the two of us on the way there and then with Grandmom on the way back.  At one point en route to her house, we stopped at a gas station that happened to be in a rough neighborhood; we both got a big fountain drink inside the convenience store and then got back into the car.  As Dad pulled out of the parking lot and turned onto the street, we heard a loud ricocheting type of noise on the back window of the car.  Each of us instinctively ducked our head as Dad quickly pulled the car over onto the side of the road so we could see what had made the noise; we both thought we had been caught in a crossfire that had shattered the glass on the back window.  When we'd had a few seconds to process things, though, we realized that the sound had come from the ice from the drinks that had spilled as we'd turned the corner after both of us had set our cups on the roof and had forgotten them there as we got back in the car.  A good laugh ensued, and we headed out onto the road again.

I miss the inside jokes and the memories we shared from running together.  One thing we used to talk about in that vein was our strategy of "rounding up" our run time ("If you say you'll be out running for 40-45 minutes, you can go for almost an hour before anybody notices," Dad had advised me many times throughout the years when I complained about not having as much time as I liked to have to run.  Prior to the time when he began training for the Ironman triathlon, his fitness goal from age 55-65 was to work out for an hour a day, at least 5 days per week.)  

I miss the exuberant way he marked his place in books, by folding half of the page down.  I was reminded of this just a couple of weeks ago when I was going through some books to see which ones could be donated to charity and I came across a book that he had handed down to me a few years ago, complete with folded down pages marking the places where he had taken a break from reading along the way.

I miss the way he took joy in everyday tasks and, in doing so, he made them fun for those around him.  This included lots of things he did to entertain me on long runs - things like singing as he ran and alternately bounced and caught a tennis ball to the beat of a song, like taking me on different running routes that he had scouted out in advance to make each one an adventure, and like coming up with unusual training techniques for the two of us like running up and down the steps on the outside of a grain storage bin for a certain amount of time (which he then challenged me to try to improve on when we did it again the next week).  

We ran up and down steps like these
as one of our training routines.

There were lots of non-running tasks that Dad made fun, too, though.  One thing I was thinking about recently was what he called "Laundry Parties."  When I was a teenager, Dad, as the person in our house who did most of the laundry, had trouble discerning whose clothes were whose between my mom's, my sisters', and mine, and so he often brought laundry baskets full of clean clothes into the den, dumped them on the couch, and announced to my sisters and me that we had to help fold them.  "It'll be fun!" he'd say. "It's a Laundry Party!" and, although we usually groaned and complained about having to help, he always joked around and made a usually boring task fun.  

I miss the way he hugged, which was often more back patting than anything else.  Somehow his technique always seemed to instill confidence in me, as if the back-patting was literally him patting me on the back to let me know he thought I'd done something right.

I miss the funny random emails and phone calls from him, sometimes about something so out of the blue that just his question or comment made me laugh out loud.  Once he called to ask me how to spell "coulotte" (pronounced "coo-lot" - this is a style of women's pants also known as a split skirt, in case you didn't know).  I spelled it for him, he thanked me, and then, obviously in the middle of a thought, he hung up.  I had to ask him later why he needed to know: he had been writing a memo to employees in his office about what was and what wasn't acceptable attire for Casual Fridays.

I miss the funny rules he made up for some things, like "I never drink beer that I can see through," a rule he imposed several years back when he discovered that he had a penchant for dark beer, despite the fact that he had been drinking lite beer for decades before that.

I miss the smell of Brut on him, so much that I sometimes break out a bottle of it that I have stashed in my bathroom just to take a whiff of it.  It's comforting in that context; it's disturbing and sad when I smell it on someone else in passing, as if that intrudes on the comfort of it in my memories from when he wore it.  

I miss the way he bounced on the balls of his feet when he walked.  I miss his competitiveness, which he carried on with himself as much as anyone else, and I miss his pride.  I miss the way he could (and usually did) talk to anyone who crossed his path.

I miss the way he lost certain things, like his wallet, so often that he tended not to worry about it whenever he did; like he did with a lot of other things, he didn't worry because he thought worrying was a waste of time and he just believed that everything would be ok.

I miss having him ask me about my job and how things were with my husband and the kids; I really miss how he used to listen to what I said in response and then how he would sometimes sigh as if he felt exhausted on my behalf and then say, "I don't know how you do it all!" with so much pride and admiration in his voice that it soothed me and made me proud, even when I'd felt like I had been struggling before then.

I miss his no-nonsense attitude and advice, the same kind he gave me when I called to tell him that I'd been offered my first job as an occupational therapist after I'd graduated from college.  I told him what the salary would be and that I thought it would be a great place to gain experience, and then I said that I had told the human resources department that I would get back to them about my decision.  Without missing a beat, he said, "Haven't you been wanting to work at a children's hospital like that for many years?"  I told him that I had, and he said,  "Well, then, what are you waiting for?" was the advice I got in return, in response to which I hung up with him and made the call to accept the job. 

I don't think Dad always recognized the value that other people found in the advice that he gave out, though.  Late one night when he was in rehab and he, as usual, couldn't sleep, we were talking about the schedule for the next day and I reminded him that I was leaving to drive back home as soon as my mom got back to stay with him the next morning.  "Be really careful driving back," he told me, and then he said, "Be sure not to stop for gas in the valley on the way back; it could be dangerous there and cell phone coverage isn't good."  He paused and added, "But I'm sure you can take care of yourself."

Before I could say anything in response, he commented, "Sometimes I worry that any advice I've given you hasn't been about the important things."

"What do you mean, Dad?" I asked him. "You've given us good advice!" to which he responded, "All I can remember telling you is stuff like always keep a towel in the trunk of your car and put some toilet paper in the waistband of your shorts when you go for a run in the woods."  It was true; he had told me both of those things many times throughout my life, and, truth be told, I always did both of them (and still do).  But, of course, that wasn't the bulk of the advice he had given to me over the years, and I wanted to be sure he realized that.  "You've taught me a lot more than that," I told him, but the only answer I got was the sound of his rhythmic snoring.  After tossing and turning and chatting for the majority of the night, he had, at last, fallen asleep.

I miss the lists of "suggestions" he emailed to us before his birthday, Father's Day, and Christmas.  To me, he was always the easiest person to buy a gift for, not just because of the list but because he had such distinct hobbies and because he would often just "make do" with whatever he already had instead of buying the latest and greatest accessories and gadgets for himself, leaving it open for us to give those things to him later if we wanted.

Once when we were running together during the time that I was preparing for a marathon, I told him that I had gotten some new gear to help me with the training and that I had estimated that I had several hundred dollars of equipment on me every time I went out the door to run.  He actually stopped in the road and said, "Are you serious?"  Yes, I told him, but that included my high-tech clothes, my shoes, my GPS-enabled watch, my heart-rate monitor, my sunglasses, and my iPod.  "That's crazy!" he said, incredulous.  He started running again but insisted that we go back by the house so that I could "ditch the extras." "That way we can really run just to run," he said.  And that's what we did.  How I miss being able to do that with him, and to talk about anything or nothing along the way.  Damn.

Looking Back

Sometimes I think back to the time when my dad was sick and I wonder how we made it through what we did.  Getting through those days - and the months of grief since he has gone on ahead - have definitely been the toughest thing I've ever had to do.  It's seemed insurmountable at times, and sometimes it still does.  I've learned a lot along the way about coping and perspective and life in general, though, and hopefully those lessons will continue to carry me through the rough waters of the ocean of grief in the time to come.  

When I look back now at the things I did to get through the weeks after Dad's diagnosis, some of it's a blur, but other parts are as clear as if they'd just happened yesterday.  Some of the memories bring a smile to my face; others make me feel like I've been punched in the gut or start a stream of tears that usually lasts the rest of the day.

One thing I remember is how I preferred to be asked how my dad was instead of how I was; I could give concrete information about his status and what was going on medically with him.  As far as how I was doing - what could I say?  The possible responses were just too overwhelming and confusing and sad.  If pressed, usually I just said, "I'm hanging in there," as if there were another option to that.

Another thing etched in my memory from the time after my dad's diagnosis is the amount of advice we got from so many different sources.  I guess people tend to feel compelled to offer advice to cancer patients and their families - and to those who are grieving.  We heard all kinds of advice - spiritual counsel, tips for dealing with chemo and lack of sleep, and so many more medical pointers from our well-meaning friends and some extended family members.  Most of it was welcome, though I must say that on some days I just wasn't in the mood to get that kind of input because I was too busy/too stressed/too sleep-deprived/too whatever to be receptive to much of anything.  So many times what we were being told were things that didn't apply to my dad or to his type of cancer.  Some days I just wanted to cry and others I just felt like beating someone up and cussing, but, really, with all that needed to be done and with the positive front that we were putting on for Dad's sake (and each others'), that wasn't really an option.

One thing I realized in the midst of all of the suggestions about coping with cancer - and later with grief - though, is that, even though I don’t believe that anyone else can really truly understand how I feel or what I have gone through because of the uniqueness of every situation and every relationship, the fact that other people seem to want to understand and make the effort to reach out is almost as good. 

Even having recently been in the seat of the person getting all of that advice, though, when I hear about someone who is going through something like what my family did, it's really tough for me to avoid giving out my own brand of advice.  I'm not sure why that is: it's certainly not that I think I'm an expert on cancer, or chemo, or grief, or ANYTHING; maybe it's because it's human nature to want to do SOMETHING to help in a crisis, and that seems helpful, despite the fact that I know it wasn't always to us.  Maybe because what happened to us was so devastating and awful that I want to do anything I can that might possibly somehow spare someone else from going through the same things.  

Finding positive stories about people with the same kind of cancer that my dad had helped me in the early stages of his illness; obviously, I thought that if SOMEBODY out there had outlived the prognosis of that diagnosis, that meant my Superhero Dad could, and I felt empowered by others' stories of strength and bravery.  I was trying to figure out what their SECRET to survival was so that I could replicate those conditions for my dad.  Early on, I saw this quote by one of the most highly respected neuro-oncologists in the country, Dr. Keith Black:

If you've recently learned that you have a brain tumor, keep this in mind: YOU ARE A STATISTIC OF ONE.  No two tumors are alike.  No one else shares your genetic makeup and your unique brain structure.  This doesn't mean that you have to face this journey alone.  It means that as you explore treatment options and "success rates" of various procedures, you cannot assume that the statistics that you encounter apply to you.

I clung to that quote like a shipwreck survivor to a piece of driftwood; besides the occasional pang of complete denial when the message of "This isn't really happening" flashed through my mind, Hope that all of the terrible statistics and the devastating prognosis wouldn't apply to my dad was all that got my family through each day.  As Dr. Henry Friedman, one of the big-time neuro-oncologists that I talked to at the Brain Tumor Center at Duke, said, "Hope provides the patient and their family the strength to continue to battle no matter how unfavorable the odds may appear to be."

From my current vantage point, I know that, in fact, you almost have to have that sense of hope as you round each corner when you have no sense of certainty about where the road will lead after such a shattering diagnosis.  Hope is really all that keeps you afloat some of the time - well, that and the love you feel for the person who is sick.

Another thing I did to buoy our Hope is to reach out for support and information through some online communities like Cancer Compass.  There I connected with some longterm GBM survivors, one with whom I emailed back and forth to get recommendations about the specific treatment protocol he was on, and the other of whom called me on the phone with words of encouragement that I later passed on to my dad and others in the family.  The second survivor, a woman about my dad's age, had been diagnosed almost 20 years before (!!!) and, although she had had to make some adjustments to her lifestyle because of some of the side effects of the treatment (mostly memory issues from the radiation to her brain), she said she was living a good life.  When she said she had taken up bird watching as a hobby to fill her days since she'd had to retire about midway through the years of on-again, off-again treatment she'd endured, and I swallowed the lump in my throat as I tried to picture my dad sitting on his back porch, watching birds all day.  We will adjust as needed, I told myself - all part of the Whatever It Takes attitude that I was so sure would carry us through.  I desperately wanted my dad to be one of the ones who made it through to the other side of the time frame we'd been given; I knew that he could be a powerful motivator and a dynamic speaker, and so I let myself dream a little that he would one day be in a position to help by telling his success story to others with such a devastating diagnosis.

I became almost consumed with statistics while my dad was sick as I worked to convince myself and other around me that Dad would beat the odds.  I knew that there were so many variables that affect "outcome" (what a harsh clinical term that is), but it seemed like Dad had most of the good ones on his side (except for excision of 95% or more of the tumor).  I guess when someone you love gets a terminal diagnosis, almost everyone grasps onto the hope that their person will be one to beat the odds.  It's what we have to do; it's human nature, I guess, to think that fighting and whatever else you've got in you will be the deciding factor instead of cold hard Fate. 

While my dad was sick, I literally couldn't sit still, whether I was physically with him or not.   The sound of silence, to me, sounded like a ticking time bomb, and the voices in my head carried on an endless litany of things To DO, things I guess I believed might help my dad, things I supposed might give me some sort of control over a situation that was spinning out of control, sometimes in slow motion but most of the time at a mindblowingly rapid rate.  During times when I had to sit still like when Dad was trying to sleep, I played Words With Friends on my phone, I wrote in the Notebook, I wrote long emails to the other "inside" family members who were also involved in Dad's care, and I updated the Care Page.  I couldn't watch TV - I was way to consumed.  I read A LOT, anything and everything I could find about GBM.  I took copious notes and made long lists of ideas and questions, mostly related to long-term survival, things that I thought we'd need to know on down the road to improve Dad's quality of life. 

One odd thing that I did at a few points during that time was laugh; it really was the embodiment of the expression, "Sometimes, you just gotta laugh."  It seemed to be so closely related to crying, which I did a lot of then too, although that was more challenging because I didn't want Dad to ever see me cry.  The hurt and the uncertainty was so present in those weeks that it seemed crazy, almost laughably out of control.  It was so tempting to start to feel unlucky, but then Dad would say or do something that would remind me of just how lucky we were in that moment, how it could always be worse, and how the only thing that we could really control at all was our perspective.

“Life is 10% what happens to you and 90% how you react to it.”  ― Charles R. Swindoll