Wednesday, June 29, 2011

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.

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