My Step-Mother is an Alien: How to live with Stage IV Cancer

In 1988, Kim Basinger and Dan Aykroyd, and Alyson Hannigan acted (badly) in a fun little movie titled, My Step-Mother is an Alien. This little fantasy is about an alien (Kim Basinger) who comes to earth disguised as a gorgeous woman to get information about earth and then report back to the mother planet whose keepers are planning to destroy it. To blend in, she marries Dan Aykroyd whose daughter (Alyson Hannigan) suspects that something is amiss when she catches Basinger eating common household batteries. Basinger learns much and decides that earth and its people interesting, quirky and ultimately valuable. As the date for her departure draws near, she tries to put it off as long as possible. When the mother ship finally bids her to come home, she pleads earth’s case, saving it from annihilation and stays with her new family.

In a way, living with stage IV cancer is like being an alien like Kim Basinger (albeit in my case, much less hot). You’re set forth on a new planet (planet Cancer). You have to learn the language and the cultural norms. Once past the initial culture shock, you adapt and learn to really enjoy living. But you know that before too long the mother planet will be calling you home. You’re going to have to leave the place you’ve learned to live in and grown to love.  It’s kind of a bummer, but not completely.

The good thing is that like Basinger’s character, having stage IV cancer can really pique your curiosity about life and the world. Many stage IV people report throwing themselves into life with gusto, having a desperate and almost insatiable hunger to learn and experience new things and people. Meeting those desires is very, very satisfying and can make for a deeply rich life. I myself have started volunteering at my local parish and garden group, taken up the violin, and re-started my graduate education after taking a year-long leave of absence. I have started up new friendships and re-kindled old ones. 

I am reminded of a quote from Sir Walter Scott, “One crowded hour of glorious life is worth an age without a name.”  

Life can be glorious and when the mother ship is coming at any minute, you crowd all you can into that one hour.

Best wishes to all my lung cancer peeps out there. Keep crowding.

Sometimes, People with Cancer are Douchebags

In my investigative reading about terminally ill people with cancer, there seems to be a fairy-tale type of quality given to those who have life-threatening illnesses. They can be considered calmer, more serene, and even wiser. People don't seem to write about the people with cancer or other potentially terminal illness who are major douche bags.

I loved Lance Armstrong. There was rarely a bicycle race that he was in that I didn't watch, glued to the TV wondering how in the world such a good-looking person, who had battled and presumably beaten stage IV testicular cancer could ride so fast and climb those mountains so nimbly - he was super-human.

Duh.

He was doping. And running a doping ring. Shee-it.

My point is that it isn't healthy for people to see people with cancer as exceptional because, #1 they're not, they just have cancer and #2, if they think of people with cancer as exceptional, then they are blinded to any possible douchebaggery that they might engage in and that others could get hurt by.

People with cancer are just people with cancer.

And Lance Armstrong is just a douchebag.

Lost at Sea

I've been feeling a little off my moorings lately, adrift, directionless lost at sea, if you will. This is occurring for several reasons, I think. 1 - Some of the people I work with have been vomiting crazy all over my office, which has been a challenge, 2 - I have upcoming scans, which always puts me in a pensive mood, like it or not, and 3 - at the same time, one of my online support communities has ceased to 'do it' for me. 

This last item has been a disappointment. It has nothing to do with the community as such. I think it has just gotten too big for me. In 'real' life, I am comfortable in smaller, more intimate groups. I'm learning that I have the same preference for online groups as well. 

Although larger groups can increase the number of 'services' available to members, for me (and I can't stress that enough), when smaller groups grow into larger ones, they lose their unique characters. The closer relationships possible in smaller groups seem to be replaced by superficial ones. Answers to questions that used to be kindly yet honest, now are widely generalized and rather smarmy. 

As I much prefer my communication to be direct and honest, my interest has faded. It seems to me that in larger groups (and society at large), people only want to feel good. It is not largely understood that negative things and feelings, although temporary, can be the impetus for some really good things. Unfortunately, to be direct and honest can sometimes be seen as negative, rude, insensitive, callous, harmful even. Consequently, you can get some pretty nasty backlash in larger online communities simply by putting an honest idea out there.

So, here I sit in my metaphorical tiny, online boat, alone, surrounded by miles and miles of empty silence - except for the click, click, click of my keyboard sending out my electronic message in a bottle adrift in the internet sea....

Negativity versus Realism OR A Rose by Any Other Name

I was able to visit my sister last weekend who is remodeling her kitchen. It is entirely gutted and consequently their kitchen things are scattered around her house. My brother-in-law was complaining about what a pain it was having to go through multiple steps to do tasks that before the tear-out, had taken seconds and little thought. I jokingly called him a Negative Nellie and he said, “Oh, look who’s talking! If it were you you’d say, ‘All this is happening and we’re all gonna die anyway!’ I laughed and said, “We’ll all die sooner!” but it got me thinking.

Now I know that I talk a lot about death. All you have to do is read this blog to know that Pollyanna I am not, but just because I talk about death, does that make me a Negative Nellie? Or is it just realism? I mean I AM going to die, most likely from this disease. But that probability has no inherent negative value attached to it. In the parlance of our times - it is what it is. What then, makes it negative?

The thought of death and dying is, without a doubt, unpleasant for almost everyone. Because it’s unpleasant, it makes people uncomfortable. My question is, is it the discomfort felt by the listener about death (or any given unpleasant topic) rather than the topic itself that makes it (and by extension the broacher of the topic ) appear negative? I think so. So ultimately my alleged negativity is not really mine at all but the projected discomfort and negative feelings of the listener, i.e. my brother-in-law, onto the discusser, i.e. me, for an unpleasant topic, i.e. the impending doom of my death.

Dearest brother-in-law:  Word.

David Rakoff is Dead

A person whose writing I adored. Whose use of the English language I envied and admired. At 47 years old. Cancer.

It's an odd thing when someone you didn't really know, but followed in one way or another - or someone that you once knew, but haven't seen in years, dies.

Suddenly there's a hole. A piece missing. Something is not quite right with the fabric of the world.

His writing was phenomenal.

I will miss him.

The Wicked Witch and the Hourglass

There has been a lot going on lately. In my personal life, there have been a lot of family events. My youngest daughter came to visit with her family, my niece was married (for the first and hopefully the last time) and my oldest daughter had a daughter – her second. As a result, there has been a lot of time spent with family and it has been great.

In Cancer World, a lot has been going on, too. There has been some good news, people responding to treatment and having the last of their surgeries – excited to get their lives back to normal. But there have also been a fair amount of bad news. People, diagnosed around the same time as me, are not fairing so well. Some have been doing really well when one regular trip to the oncologist or quarterly scan shows that the cancer is back on the march. One person is now on hospice. It makes me wonder how much time do I have left? I was pondering this when a scene from The Wizard of Oz popped into my head. You know, the one where Dorothy has been captured by the Wicked Witch of the West who, because she can’t get her hands on those coveted ruby slippers, grabs a huge hourglass with ominous, blood-red sand, flips it over and pronounces, “This is how long you have to live!” Dorothy, much to the relief of anxious children watching, is eventually rescued by her friends.  

Like Dorothy, I feel like I’m living with one eye glued to my own hourglass – only I can’t see how much sand I have left. And there is no foreseeable rescue.  Cancer has become my own personal wicked witch and although I can keep her at bay for a while, the blood-red sand continues to pour…

                                         Drawing courtesy of Daughter Amy

Reflections on Life and Death while riding the ‘eL’ during the NATO Summit

     Against the wishes of my daughters, I was in the subway tunnel at Lake Street in Chicago waiting for the Red Line to take me north to work. A young woman entered and sat on a bench about 10 feet from me. There were already two men sitting there and she took the remaining seat between them. From her hands you could tell that she was dark-skinned (as were the men seated on the bench). She, however, was nearly fully veiled. She wasn’t wearing a complete burqa, but her head was completely covered except for her eyes, by two pieces of cloth. I think it’s called a niqab. She was dressed in a very baggy, long skirt, a baggy shirt and a baggy denim jacket. She carried three shoulder bags with her. She took a book out of one of the bags and started to read.

As the men noticed her, they each got up from the bench, moved away from her and stood. One looked at back at her and moved to a different area on the platform, presumably so he wouldn’t have to ride in the same car.

     Once we entered the train, people were watching her; glancing at her furtively and then looking around at others as if to say, “Do you see what’s over here? Should we be worried?” People entering the car at various stops would see her and move to the end of the car furthest from her. She exited the car at Truman City College. Just a student.

     Now I’ve got to say that I’ve been riding the subway/’eL’ system in Chicago for almost seven years now and I’ve never seen anything like this before. Therefore, my assumption is that it’s because of the NATO summit that people were so jittery about this girl. (Which is itself interesting because the people who seem to be protesting and getting accused of illegal activities are unveiled white men, but I digress.)

     Then I got to thinking that every day we go through life not thinking about it, but living with the reality that any moment could be our last. I suppose it is remotely possible that this young woman could have been a suicide bomber and, waiting for the proper moment, exploded herself and everyone in the ‘eL’ car with her. We hear stories like this from countries far away through an untrustworthy media; girls who blow themselves up for a cause. Because of this, the mere presence of this school girl made people think about bombings. About disaster. About death.

     What I seem to be finding with my ongoing death study is that people generally don’t talk about death (or think about it very much) until they have to. Until they or someone close to them is facing it.  And it’s no wonder; I mean it’s not a very pleasant topic in our culture– too many unknowns. And too much fear – of pain, of declining faculties, of eventual annihilation of the self. It’s pretty heavy. Some scholars claim that the topic of death is taboo in American culture. I wouldn’t go that far. I just think that people don’t like to talk about things that are unpleasant and sometimes upsetting.

     I would like to see, though, what a society would look like if people thought about it more. If they regularly pondered that any moment could result in their death. Not that they should go around being anxious about every choice and activity, but that maybe with considering their death, they would consider what impressions they may leave – or not leave on the places and people that they encounter on any given day.

     I like to think it would have positive affect. Maybe then people would not treat a girl like this with such contempt.