Not Knowing: Grandmom's Story, Part 4

Continued from Part 3 - Grandmom's Story 

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

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

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

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

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

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

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

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

To be continued ... 

Anger and Planting Flowers

Here’s what I’ve learned about the Anger that is so commonly part of the process of grieving: it’s not always logical and even logic doesn’t make it go away.

Even when part of my brain knows that what the other part is thinking is somewhat Crazy, I can’t help myself from being really pissed off about my dad’s illness and subsequent death.  Some of the Anger is based on confusion and the fact that I know there are no answers to many of the questions we have.  It’s based on the unfairness and the unjustness of what happened to my dad and to my family.  It comes from my devastation at how things went as well as my extreme disappointment in people who did not live up to my expectations, who didn’t help my siblings or my mom, who didn’t show respect or concern for my dad or my family as I felt they should have.  Maybe it’s unreasonable and maybe it’s illogical; I realize that definitely it’s my problem and my issue and my grief and Anger coming into play here. 

In Elisabeth Kubler-Ross’s final book, “On Grief and Grieving,” she says, “Anger surfaces once you are feeling safe enough to know that you will probably survive whatever comes.  At first, the fact that you lived through the loss is surprising to you.  Then more feelings hit, and anger is usually at the front of the line as feelings of sadness, panic, hurt, and loneliness also appear, stronger than ever.”  She talks about how in this stage the grieving person is often angry that he or she couldn’t stop what happened from happening, despite how badly that person wanted to be able to stop it.  She says, “The will to save a life is not the power to stop a death.”  How poignant, and how very true. 

I think a lot about both what is at the root of my anger and what the effects of that anger are.  I’m mad that I have to live in a world where I can’t talk to or see my dad. I’m angry on Dad’s behalf – it’s unfair that he didn't get to retire, to finish the Ironman, to feel proud of how he provided financially for my mom. He was only 67!  I expected to have him for at least another 20 years, and I am sure he expected to be around for at least that long too.

Kubler-Ross says, “Anger is a necessary stage for the healing process.  The more you truly feel it, the more it will begin to dissipate and the more you will heal.”  Well, if that’s true, I ought to be a regular freaking Red Cross Truck.

Some of my fury is directed at people who say they know how I feel (not just how it feels to lose a loved one, but how I in particular am feeling!), at those who committed to helping and didn't, or at those whom I think should have done something but who did not.  I am so very angry at the doctors for not figuring it out and even at those people who are unaffected and seem to be living as if this tragedy didn't occur. 

 On some level, I don't want to let go of the anger because I'm afraid that I will either plunge into depression and not come out or that I will transition through the last two stages of grief and be done with grieving and thus with remembering - and I need to remember, to be sure I keep Dad with me.

From this Anger, I can so easily spiral into thinking about things like What’s the point?  Why bother doing things like going to work each day?  Who cares about saving money?  Why make the bed?  WHY BOTHER PLANTING FLOWERS, if we don’t know what tomorrow will bring?  I know what Dad would say to this:  “Because you don’t know that tomorrow won’t go your way!”  And that’s true, but I’m still so incensed that I can hardly breathe sometimes.

At one point, I said that going through the experience of my dad’s illness and death and the subsequent grief is akin to being burned.  Upon further inspection, though, I’d say it feels much more like a traumatic amputation.  I may adjust to doing things differently.  I may one day be able to function and appear to be doing things just like I used to do them.  But, in reality, I will only be doing those things in an adapted fashion.  I will be forever changed and there will always be a part of me that’s missing. 

I am intolerant of some things and some people now; I just can’t listen to drivel.  If associating with someone brings drama, stress, or turmoil into my life, I cannot be that person’s friend for now.  That sounds so selfish, I know, and I hate to be like that.  But there’s only so much oxygen in this space, and grief and anger take most of it, and the rest goes to just doing what has to be done to get through the day.

I would guess that both surgeons and oncologists usually either get the benefit of deep gratitude or bear the brunt of profound anger in their line of work.  Either they fixed the problem, or they didn’t.  I GET that they can’t cure cancer (yet), but what I can’t seem to get past is the amount of Hope that was dished out by these people, at least for Dad to have gotten some function and quality of life back and for him to have some time (more than the ten weeks he had).  And the lack of follow-through and follow-up.  It seemed like a three-ring circus at certain points when Dad was so sick.  I honestly don’t know how some of the health care workers we dealt with look at themselves in the mirror everyday after what they did or didn’t do in my dad’s care.  A few of them just seemed to be putting their time in, working until the end of their shifts.  Some of the problems might have been due to inexperience with his exact type of cancer or even just plain inexperience, and some might have been from certain medical staff being overwhelmed with the workload, the amount of patients that come through the hospital and the doctor’s office on a daily basis.  BUT THAT IS NO EXCUSE!!

Dad’s anxiety and emotional health was completely skirted over by 99% of those involved in his care, for example.  One of the few really good nurses Dad had on the oncology floor at the hospital told us that she wanted to spend as much time with Dad as she could to learn more about his type of cancer.  She said, “We hardly ever see any GBM’s here, and we need to know what to do when we do see them.”  I admired and appreciated her honesty and directness as well as the extra attention she gave to us during the several shifts she was assigned to our case. 

I have heard that it’s almost universal for anyone who has suffered the loss of a loved one to wonder in retrospect about what else he or she could have done to protect, care for, and/or save that person.  Definitely I think about that on a daily basis, and here is one thing I can think of that I wish I had known to do:  find out the credentials and experience of every health care worker who comes into contact with your loved one.  Especially when his or her type of cancer/diagnosis is relatively rare.  Especially about the surgeons who are going to cut and the others who are going to prescribe and medicate the person who is sick.

Too late, I learned the following: “Of the 5,000 or so neurosurgeons working in the U.S. today, 4,900 concentrate mostly on the spine and deal on average with only five or six brain tumors a year. Of the 100 who routinely work inside the skull, perhaps 50 specialize in blood-vessel repairs rather than tumors. Only the remaining 50 can be considered brain-tumor specialists, averaging 100 surgeries annually.”

This information came from a Time Magazine article written about top neuro-oncologist Dr. Keith Black, who is one of a few neurosurgeons in the country who averages 250 brain tumor operations yearly.  I wish we could have gotten Dad to him.  Of course I don’t know if it would have made any difference at all, but I would have appreciated the option of a second opinion or any options at all. 

Wouldn’t you think a BRAIN SURGEON would be automatically obligated to tell the family of a patient with a brain tumor how much experience he has with such a delicate type of surgery?  Nope.  I’m not saying the surgeon that was assigned to Dad’s case was inexperienced or didn’t do a good job, but I am furious that we weren’t given a choice, or even a choice of having a choice.

We were directly told that the only option was for Dad to have surgery that week to biopsy and resect (try to remove) the tumor.  The neurosurgeon told us that Dad would regain at least some (and hopefully most or all) function after the surgery, but that never happened, and he never bothered to offer an explanation as to why it didn’t.

After the surgery, this neurosurgeon left us waiting for hours for an update after we knew the surgery had ended, and when he did show up to usher us into the Room of Doom, he laid the news on us that, yep, what he had suspected was true, Dad did indeed have the most deadly type of brain cancer and his prognosis was not good at all.  He told us that he had “managed to remove 80% of the tumor" and said the remaining part was “buried too deep in the brain.”  I remember so distinctly how he said “the” brain.  Not “his” or “your husband/dad’s” brain.  How awfully impersonal.  Like he was intentionally trying to stay detached and just couldn’t wait to get Dad the hell off his caseload.

At the time, we thought that 80% sounded pretty darn good – hey, almost all of it!  But, after I learned what I learned, it hit me full force that 80% in most books is a “C,” average, and not very good at all when it comes to the survival rate of aggressive brain cancer.  My dad was an “A” guy – he deserved at least 93% - why didn’t that guy TRY HARDER?  Did he have a freaking GOLF GAME to get to that afternoon?  At the end of his proclamation that terrible day, he offered us the name of a colleague of his, an oncologist whom he said was active in many clinical trials, and then stood there as if he were waiting on us to thank him. 

I loved the oncologist, for awhile.  He seemed aggressive enough, and he seemed to be a good listener.  But he was a very busy guy.  In the last few weeks of Dad’s illness, he couldn’t seem to return a phone call (he just had a nurse do it), and eventually it was evident that he was missing the Big Picture, even though it was like having an elephant in the room.  I had asked him on several occasions during the time Dad was sick if he would bring up the subject of hospice when the time came so that we would know when to say when, and he totally dropped the ball.  Maybe he was in his own type of Denial – he obviously expected Dad to get better with the treatment protocol he was on – but, from my perspective, it was HIS PRIMARY RESPONSIBILITY to provide whatever care Dad needed, and he did not do that.

We had to bring up the subject of Hospice with the oncologist, and, when we did, he said he wasn’t sure it was time and implied that he thought Dad just needed to get stronger and then the radiation could be started.  At the time, though, Dad couldn’t even turn his head in the bed or suck liquids through a straw.  The oncologist went home that night with the topic of hospice hanging in the balance.  When he came back early the next morning, he said he’d been thinking about about Dad all night, that he could see now that it was the right choice, and that Dad could still get better and if he did then we could revoke hospice and move forward with treatment.  The New Year’s weekend was coming up, and, like he did the weekend before for Christmas, the oncologist was going off duty from Friday morning until Monday morning for the holiday.  He solemnly told my mom that he would call the house and talk to her or one of my sisters or me after the weekend to check in and that he hoped so much that the news then would be that Dad had rallied.

All good, except that he never called.  Not that Monday, or the next day when Dad was declining so rapidly that the hospice nurse told us that we needed to get to his bedside and stay there, or the day after when Dad went on ahead.  Naively, I thought that Dad was a special patient to this guy, because Dad was so exceptional to everyone who knew him.  The realization that he wasn’t cuts me so deep and enrages me so completely that it comes close to making me lose faith in mankind all together.   Yeah, I’m pretty angry.

Through all of this Anger, though, this Fury that is thick like smoke, so thick that I can hardly SEE sometimes, I am trying.  I’m trying to remember that Anger is an emotion, one that needs to be expressed, not bottled up, and one that is from the heart and cannot be explained or wiped away with reasoning or will.  I’m trying to remember the generosity of those who did support us and who did care for Dad, like that nurse who helped us through one of the worst nights when Dad was so very sick in the hospital.  I’m trying to remember to feel lucky, and that, like Dad often said, ”It could have been worse!”  I’m trying to honor my dad and my whole family and put one foot in front of the other in spite of the burn of my Anger. I’m trying to be more like Dad, to be kind and forgiving even when someone may not deserve it.  I’m trying to believe that it’s not stupid to plant flowers.

To read the second entry on thoughts and comments on Anger, click here.

Shhhh! It's Brain Cancer! (Part Two)

A brain scan of a GBM tumor

Just so I don’t leave anyone hanging after Part 1 of this message, here are the follow-up answers to the questions posed in that post:

*Some famous people who have had Glioblastoma Multiforma (GBM), the type of brain cancer my dad had, are politician Ted Kennedy (survived 15 months after diagnosis), composer George Gershwin (survived 12 months), actress Ethel Merman (10 months), politician Lee Atwater (12 months), Pulitzer Prize winner David Shaw (3 months), CIA Director William J. Casey (5 months), MLB pitcher Tug McGraw (the father of singer Tim McGraw, survived 9 months), and South Carolina Governor Robert McNair (50 days).  Also included in this list are two men who wrote about their personal experiences with GBM: famous author John Gunther, who wrote "Death Be Not Proud" about his teenaged son Johnny who lived with GBM for 15 months after diagnosis, and Ivan Noble, BBC journalist and science writer who published articles about his own GBM diagnosis after which he lived for 2 years.

In addition, many more celebrities have had metastatic brain cancer, which is another type of cancer that has spread from another part of the body to the brain, and lower-grade types of primary brain cancer, both of which are obviously very serious but neither of which is as catastrophic as GBM.  There are eight types of primary malignant brain cancers; each originates in the brain and does not spread outside the central nervous system.  Of these, GBM is the most aggressive and the most deadly.  The median survival rate after a diagnosis of GBM in an adult is twelve months.  A GBM tumor typically doubles in size every 3-4 weeks, and so if even a few cells are left behind after surgery, the tumor can become quite large again in just a few months, if follow-up treatment is not successful.


Dad’s neurosurgeon removed 80% of his tumor.  A scan done 3 weeks later showed that the remaining tumor had already doubled in size, which meant “there was limited benefit of the surgical reduction” (yet another medical term we learned).  In layman’s terms, when Dad’s tumor was discovered, it was already the size of a racquetball.  It was cut down to about the size of a grape, but in only 3 weeks it had grown to the size of a walnut. 

 

During the course of Dad’s illness, I learned that Hope is a very tricky thing:  one needs JUST ENOUGH to keep going, but TOO MUCH can be every bit as dangerous as not enough. 

When one is slapped in the face with the news of a loved one’s being diagnosed with a catastrophic illness, Hope is like a pair of scissors.  It can be useful or even necessary at times to get the job done, but it’s not something with which one should EVER run.

I’ve said before in this blog that one reason my family was lucky in the face of Dad’s illness was that we all somehow pulled together, taking turns being strong and using our individual knowledge and skills to push things along.  We all also did whatever we had to just to get through each day.


In a kind of foreshadowing to the way I am now using this blog as a tool to process and record, one thing that seemed to help me while Dad was sick was to post news about what was going on for our family and friends to read on Dad’s Care Page.  One of my sisters helped me with the wording of many of the entries, and we spent time almost on a daily basis talking about what to include in each posting, after which I updated the page.  For the first nine weeks of the ten weeks Dad was sick, we chose to view his illness as a challenge instead of a catastrophe.  Running with scissors, I know, but at least we were moving forward instead of standing still in a state of shock.

I did what I could to keep the news in the posts positive and upbeat for four reasons:  because I was sure that at some point Dad would read the entries; because I wanted SO DESPERATELY for there to be a good outcome (“good” being a VERY relative term); because I felt it was likely that Dad would be able to go back to his job in some capacity at some point, even if he was never CURED, and because I wanted to protect Dad from what little I could, to preserve what little dignity for him that I could, and to give him what little I had to offer him.  I didn’t think it out like that at the time we were posting those bulletins; I really didn’t have the energy, time, or even the capacity to analyze things like that at the time.  But, looking back from this vantage point, I can see that’s why the posts were the way they were.

This isn’t to say that the updates weren’t truthful - because they were!  It’s just that certain details were not included, especially things concerning Dad’s memory and reasoning, which somehow seemed so much more private than his physical condition and function did.  It was hard to put into words how at times he seemed like himself but then at other times he didn’t.  His sense of humor, his courage, his determination, and his compassion were in place as usual.  He believed COMPLETELY that he was going to get better, as did we.  Even now as I write about the cognitive changes in him, I feel like I should tell him that I’m sorry for divulging what seems like such a private thing.  I can describe the physical challenges he was having (issues with sensation and strength in his left side, balance, and endurance), but when it comes to talking about the way he needed supervision for safety, constant reminders and reviews of what had happened and what was going to happen, I feel like I am betraying him. 

Only when it became undeniably clear that he wasn’t going to get better did it start to feel appropriate instead of disrespectful to include more of the details about Dad’s condition for public knowledge.  I didn’t want to compromise anyone’s Hope, but I wanted to be as honest on paper as I was able to be with myself in my head and in my heart.  Never did I use the words terminal, end stage, or poor prognosis.  When we brought Dad home on hospice, I vehemently felt that those of us in my immediate family who were caring for him could not and should not have to withstand any criticism or judgment OR EVEN questions or pity for having made the decision to call in hospice.  We didn’t want anyone to see our decision as giving up; rather, we were respecting Dad’s wishes, which he had been very clear about before his diagnosis and while he was sick.  Again, I was trying to protect Dad – and myself and my family – in a situation in which that brand of protection didn’t carry much weight.   We were paving the road, though, as we were starting to be unable to deny or defer what was coming down the pipe.

Acceptance, depression, shock, anger, and so many more emotions came in waves and had many layers for those of us who were close to Dad during that last week.  Mostly we were just trying to spend every minute we could with him, at first to hoard as many more memories as we could squeeze in to the time we knew was so limited and then to try to comfort him and give him all the love, security, and re-assurance we could.  The quiet of the news of Dad’s condition was over, but the quiet of his state had set in, and on January 5, 2011, Dad went on ahead.

Click here to hear "Taps."