Good-bye Lung Cancer Awareness Month

Lung Cancer (and Pancreatic Cancer) Awareness Month is almost over. Like any ‘awareness month’, the end of it is a signal that the world has been loosed from its month-long obligation to be aware of our suffering.  For those who live with and suffer from cancer or whatever condition or ailment warrants its very own month, we continue to be painfully aware of our conditions day after day after freaking day.

Awareness is great. Don’t get me wrong. I think it’s important for people who suffer to have support. But by marketing awareness, what do we really do? We make people feel good, recognize their unfortunate status, thankful, perhaps that their condition is not ours, and move on.  Oh, and we also buy stuff.

Awareness can also spur donations, a (sometimes small) percentage of which goes to treatment research, which is very good and very necessary. But the question for me is why are we not spending more money looking for causal agents? I understand that this is a huge undertaking, especially considering the vast varieties of cancer types and sub types that are just being discovered. But think of the money that we as a society spend on cancer t-shirts, rubber wrist bands, NFL sweatbands, and pink just-about-everything that could be used for researching why so many of us are getting cancer in the first place.

So as you turn the page on your calendar and turn your thoughts from those with Lung and Pancreatic Cancer, you can say hello to December – International Safe Toys and Gifts, National Drunk and Drugged Driving Prevention, Season Depression Awareness, Identity Theft Prevention and Awareness, and Young Children’s Safe Toys & Gifts Awareness Month. 

I've just ordered rubber wrist bands for all of them.

Winter's Bone

Although a good movie and incredible book (that I highly recommend) about life in the poverty-stricken Ozarks (where I spent the last part of my childhood), this post is about bone metastases that sometimes accompanies lung cancer. In particular, the discomfort and real pain that comes about or increases during the winter.

I have a lot of bone metastases.

My cranium, my spine and multiple spots in my sacrum, pelvis & upper femurs all light up like the seasonally-appropriate Christmas tree whenever I have PETs, CTs and MRIs. Although I am lucky enough to have had some success with surgery, radiation and Zometa stopping the tumor growth and actually growing new bone, come winter time, I feel like Old Man Winter incarnate.

The discomfort can range from achy to heavy fatigue to the occasional sharp, stabbing pain originating in the back and running through nerves to remote areas of the arms and legs. On the upside (not to be too masochistic), the pain does remind me that I’m still here. I’m still alive (take THAT cancer - HA!).

Some time ago, my oncologist told me that to have such extensive bone metastases (as opposed to extensive primary tumors or extensive metastases I more vital organs) is a little unusual. My orthopedic oncologist told me that this sort of cancer ‘expression’ is a double-edged sword – you get to live longer, but you also end up with increasing amounts of pain and debilitation. What do you say to that?

The way I see it is this – many people who have other diseases or disorders live a life wherein they hurt a lot and/or can’t get around very well but still maintain a good life (friends, family, hobbies, etc.).  I can deal with eventually having to use a walker or wheelchair.  I can deal with daily pain (so far anyway) especially if I can maintain a clear mind with which I can think up any number of distractions from the pain.

Also ready access to any number of popular pain medications – yeah, drugs help, too.

Here’s hoping we all survive Winter’s Bone.

P.S. At the very least, rent the movie.

P.S.S. A shout out to Deborah the Poet for inspiring this post.

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.