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Monday, December 17, 2012

My Cancer is No Tragedy...

and neither is yours.

However, the mass murder of children, in whatever form, is.

I encourage you to lift them and their families up to whatever form of God you believe in.

Thursday, December 13, 2012

Advent, Cancer & Hope

I work at a private Jesuit university and I love it. Every year, the university holds the nine-month-long "Spiritual Exercises in Everyday Life" which was created by St. Ignatius Loyola himself. Participants meet weekly with a group and then alone with a spiritual adviser.  In 2011, I decided to give it a try as a way to assuage the anxieties that come from having late stage cancer. I needed comfort and I was hoping to find it. My experience went well and this year, they asked me to speak at an Advent service for people who are in the program this year, and share my reflections of my experience with The Exercises. What follows is the transcript from that talk. Advent is about hope. In Cancer World there is also a lot of hope, some of it downright desperate. My wish for all of us with cancer is that we are able to, by whatever means we choose, find our own hope. This is how I find it:

Before I started the Exercises, I had been pretty estranged from God, as well as most of my family. I had come to believe that the only thing or person that I could truly count on was me. So when I started the Exercises, it was more of a utilitarian venture than a spiritual one. About a year prior to my Exercise experience, I received a diagnosis of stage IV lung cancer. As for many people, my diagnosis was a shock. I was very young for this type of cancer, only 44 at diagnosis when the average age was 70. Also, I had done everything right, eaten well, exercises regularly, did not smoke, drank only socially - there was absolutely no cancer in my family background - but there I was. I had cancer.
            And so to deal with the shock of it all, I did what I usually did and read. I read books about death. I read books about cancer. I read books about death from cancer. And in those books I learned that when people get a serious diagnosis, they overwhelmingly turn toward spiritual things for comfort. And so that sort of gave me the permission I needed to seek God - for comfort purposes - and so I committed to the Exercises.
My first clue that the process was not going to necessarily provide comfort in the way I assumed came from the Prayer of the First Principle and Foundation, “Lord God, let nothing ever distract me from Your love...neither health nor sickness, wealth nor poverty, honor nor dishonor, long life nor short life.” I remember thinking, “Really?”. Because frankly, it mattered to me very much whether I had a long life or a short one and knowing that I was likely going to have a short one was indeed a distraction from God’s love. Or at least my perception of His love. This started coming up in my meetings with my spiritual advisor, Father Bob.

Excerpt from my Exercises Journal:  10/19/11 - I met w/Father Bob yesterday and part of the discussion was on how I’ve been doing with the exercises. I told him that before I started, I was doing pretty well as far as my dealing, psychologically, with the cancer. Since I’ve started however, I’ve felt a little knocked off my pins. After some thought, he suggested an explanation that I had only touched on. Here I am moving closer to the Entity who gave me the cancer and it’s causing some trouble. As soon as he said it, I knew it was spot on...Today’s readings were basically about opening yourself to God, but how do you open yourself to God when He’s given you a deadly disease which will ultimately cause you suffering and early death? How do you trust that?

            So after some further reflection, for me the Exercises became instruction on learning to trust God enough to not be distracted from His love.

             It was around this time that the readings focused on Romans 9:20-21:

“But who indeed are you, a human being, to talk back to God? Will what is made say to its maker, “Why have you created me so?” Or does not the potter have a right over the clay, to make out of the same lump one vessel for a noble purpose and another for an ignoble one?”

For whatever reason, this passage stuck with me and I thought about it a lot.  I began to think that God had added cancer to my vessel and that was a challenge - but it did not mean that I was less of a vessel, nor were God’s expectations of this vessel lowered. Recently, I had been living alternatively as an ‘angry vessel’ or a ‘pity vessel’ but this would not do. I was not a God-trusting-vessel. God had made me for a purpose and I needed to live up to that purpose.
As we know, the Exercises serve as a way for us to get to know God more thoroughly and intimately. It is through this intimacy that we gain and grow trust and love.  Ignatius teaches us that to find union with God we should use those things that help us lovingly serve, and to let go of those things that don’t. If I wanted to trust and be intimate with God, I was going to need to be the type of vessel that finds ways to lovingly serve, regardless of my cancer. Anger, fear and self pity weren’t helping me to lovingly serve and so, as much as possible, I asked God to help me let them go.

            In their place, I filled my pot with relationships and volunteering. I worked on my relationships with my estranged family members that culminated in a celebratory family reunion this past summer. I started regularly volunteering at several places in my neighborhood. I became involved in some of my parish ministries which led to me make more friends and find more spiritual support and more avenues of service. At work, I worked on the Ignatian Day of Service planning committee and helped organize a new outreach program in my department. Although it has not been simple, and it has not always left me feeling comforted, I feel like I am living on purpose and with purpose, and living well.

            This is all a work in progress, of course. I still have times when the angry, fearful and self-pitying cancer vessel shows up.

            But I am truly glad for my experience with the Exercises. It has  helped me to reconcile - with God, with others and with myself. And it has strengthened me. More valuable than physical healing, I believe that I experienced a spiritual renewal. Cancer happened to me, it happened in me, but it also happened for me, and for those around me, I think. Regardless of my prognosis and the progression of my disease, my hope is that I will continue to be the good vessel, filled with, carrying around and pouring out God’s love and service.

Thursday, November 29, 2012

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.

Monday, November 26, 2012

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.

Wednesday, October 24, 2012

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.

Friday, October 12, 2012

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.


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.

Sunday, September 30, 2012

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....

Thursday, August 16, 2012

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.

Saturday, August 11, 2012

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.

Sunday, July 8, 2012

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

Monday, May 21, 2012

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.

Saturday, April 21, 2012

As Kingfishers Catch Fire

As kingfishers catch fire, dragonflies draw flame;
As tumbled over rim and in roundy wells
Stones ring; like each tucked string tells, each hung bell's
Bow swung finds tongue to fling out broad its name;
Each mortal thing does one thing and the same:
Deals out that being indoors each one dwells;
Selves -- goes itself; myself it speaks and spells,
Crying What I do is me: for that I came

I say more: the just man justices
Keeps grace: that keeps all his goings graces;
Acts in God's eye what in God's eye he is --
Christ -- for Christ plays in ten thousand places,
Lovely in limbs and lovely in eyes not his
To the Father through the features of men's faces.

~1918, Gerard Manley Hopkins

Wednesday, April 4, 2012

18 Months and Thriving!

Today is my 18-month Cancerversary and I am in a celebratory mood!

This is strange for me.

Being a budding scholar of death studies does not lend itself to much in the way of celebration...or happiness..or anything bright and shiny.

And recently, I have been feeling a LOT of survivor's guilt.

I'm starting a research project and the topic is, of course, death...and cancer...people who die of cancer...and I realize that a lot of people had a lot less time between diagnosis and death than I have, even at 18 months.

and so I was struggling with it - a sort of "why me?" only not the "I have cancer, why me?", but the "I'm not dead yet, why me?"

But that's not very useful, is it?

And I doubt very much that the people who have died of cancer after a short period of time would celebrate me being down in the dumps because I'm not dead yet.

They'd probably think that it was really stupid.

Which it is.

So, for all of those folks out there who have died of cancer, I live life for you! I celebrate life for you! I kick cancer's nasty rat ass for you!

As long as I possibly can.

Count on it.

Thursday, March 29, 2012

Cancer at 2:00 am: Discussions with God

In our weekly meetings, Father Bob and I discuss various things. Cancer is inevitably a regular topic. A couple of weeks ago, he asked me if I talked to God about my cancer. I stuttered and sputtered for a moment and said, "No. I really don't feel the need." He looked amused and said that perhaps it's something that I should try. Grimacing, I told him that I would, but with misgivings.So, for one week, I tried to talk to God about cancer.

It did not go well.

All I did was get angry. And not necessarily about MY cancer, but about cancer in general. We can guess the hows and whys of why more and more people at younger and younger ages are getting cancer, but when it comes down to it, (if you believe in God) you have to accept that God either gave you cancer or allowed you to get cancer - presumably for ultimate good, but it's hard to see that when you read more and more stories of younger and younger people dying of cancers that used to be seen only in the elderly.

***Qualifier - this is not to say that lives of young people are of more value than those of the elderly, but old bodies have had a lifetime of being barraged with oxidants, so it makes more sense, medically, that they would get more cancers.***

The more I thought about it, the more angry and depressed I became. I would go over and over what cancer meant for the many people who, not only have it, but who love and care for those who have it, and finally thought that this comes down to questions about God's role in "natural evil" (although nowadays, I'm not sure that you can consider many cancer "natural evils" because of environmental factors). This has been argued for millennia and I'm certainly not going to be the one to figure it out.

So I stopped talking to God about cancer.

In general, anyway. I know that when I think of my cancer and my cancer treatment and how well it's gone, especially in comparison to others, many of whom are younger, I am nothing but deeply and profoundly grateful.

My discussions with God now lean toward requests for direction. Okay, I'm still here. I have this time. What do You want me to do with it? Please show me what You want me to do with it and also, let me know that with some certainty that what I think that You're showing me, is really what You want me to do.

I'd like to think that what He wants is something big and profound. But my guess is that it will be a 15 second seemingly innocuous conversation with a complete stranger.

I wonder if I'll ever know.

Wednesday, March 21, 2012


Definition: Grace 1) refinement of movement; 2) courteous goodwill

I have a few blogs that I follow, most of them cancer-related. Some of them not. Last year, I stumbled onto one while looking for instructions on making home-made Christmas decorations that turned out to be, in part, a cancer blog. The person writing is a young woman in her early 20s who was diagnosed with stage III esophageal cancer - a person infused with so much grace while dealing with a serious illness I have never seen before, nor since.

I have never been a graceful person. As a child, I regularly ran into, fell off of, or stumbled over things that other kids seemed to negotiate with ease. I swore off of high heels in my 20s because they were just too dangerous, i.e. embarrassing, for me to risk tottering around on.

Emotionally, I am not a graceful person either. Although able to keep my emotions in check the vast majority of the time, when they do erupt it is a dastardly, ugly thing to see. I cry, flail, cuss and generally am as UN-graceful as a person can be.

Even so, I long (no really - LONG) to have the strength, fortitude, faith, whatever it is - to walk through this perilous life with the spiritual grace possessed by this young woman.

Yet I continue to totter, as if on high heels, through this life and this disease, stumbling and flailing, running into, falling off of, and stumbling over the things that others negotiate with ease.

Some things never change.

Sunday, March 18, 2012

Not Suffering Fools Lightly and Other Bits of Carelessness

I once had a friend tell me that I did not suffer fools lightly. I think that this is increasingly true. I have no tolerance for nonsense anymore and I seem to be able to zip my lip, bite my tongue, or turn my cheek less and less.

What this means is that if something bothers me, I say it out loud, ask why it's happening and maybe even suggest corrective behavior. Now to be clear, I'm not talking about things like when you receive the wrong food at a restaurant or someone accidently bumping into you or human sorts of things. I'm talking about nasty comments, selfish acts and generally rude behavior. I try to be reasonable and not aggressive, but this sort of simple openness does not suit our current social contracts very well - although I like to fantasize that I sometimes say things that others just think.

Example #1: I went to my sister's 50th birthday party last December. It was a simple affair with just family. Her brother-in-law was there and he made a couple of what I thought were fairly inappropriate, off-color remarks to/about my sister. I believe they were meant to be cleaver. I think he was being a major douche bag. Although I wanted to confront him at the time, I didn't say anything. The next time I met with my sister and her husband, however, I asked about him and the comments. I wanted to understand why no one was calling him out. Why do we tolerate bad behavior? To be polite? Is the definition of polite "to tolerate douche baggery"? I don't think so.

Example #2: the other day, I was riding the 'eL' home. I had just had my chemo so I felt a little barfy and had a bit of a headache. I had my eyes closed to make the ride go faster and suddenly smelled a cigarette. Now for those of you who don't know, smoking on the 'eL' is not allowed and it hardly ever happens, in my experience. I opened my eyes and looked around. I spotted a young white man smoking a cigarette, flicking the ashes into the palm of his hand, and then eating the ashes. I kept trying to catch his eye so that he could see my displeasure. Nothing. People were staring at him and covering their mouths & noses with scarves and cupped hands. About five minutes passed when he decided to get up and walk up and down the isle, spreading his cigarette smoke more evenly around the car. Something inside me snapped. I thought, "Really? Really? I have lung cancer, I'm on my way home from chemo and I and everyone else here have to tolerate this bonehead smoking INSIDE the 'eL' car?!?" I heard myself say rather loudly,

"Boy! Why don't you just sit down?!"

He looked at me at which point I could see that he was definitely 'not right'. "Just a little edgy...a little edgy," he said. "Oh crap," I thought. You never know when you run into someone who's 'not right' on the 'eL' what kind of 'not right' they are. Some can be pretty aggressive and kind of scary. But I thought, "In for a dime, in for a dollar," gulped, and said,

"Then put out the cigarette!" I shouted.

He stopped walking, dropped the cigarette and vigorously stomped it out. He continued to walk back and forth, but as it was the cigarette that was the biggest problem, I was satisfied. I was also surprised. If I would have known that all it took was a commanding voice and direction, I would have hollered at him from the get go.

There was a day, and not so long ago, when there was no way that I would have either talked to my sister and brother-in-law about a bonehead relative or carelessly confronted a person of questionable mental status in the confines of an 'eL' car.

Many of the fears that I once had are completely gone. I haven't decided if my new-found forthrightness is a good thing or not. I have to say, it feels pretty good.

I feel like I'm living honestly for maybe the first time in my life.

Friday, March 16, 2012

Podcasts & Vacations

I decided to take a break from my snarky self so me & hubby dropped the dog with grandma in Indiana and flew to Florida to see my parents. The weather was perfect and I think we all enjoyed each other's company very much. We just returned and I'm still feeling relaxed and content. A far cry from the fury of the last couple of weeks.

While I was gone, the podcast that I recorded with my oncologist went 'live'. If you're interested, you can find it by clicking here:

The site itself is a collection of information and podcasts about many different types of cancer. My podcast has some interesting information about lung cancer subgroups (people whose lung cancer is propelled by genetic disturbances) and targeted therapy. You also get to hear me talk a little bit. I'm not sure how interesting THAT is, but I have been told that I sound smart, so there you go.

At my last doctor's appointment, I spoke with my onc about the podcast and about some of the research that I'm planning on planning (no problem with procrastination here) and she gave me an article out of the Journal of Oncology and told me about an oncology conference that will be coming to Chicago in June and wondered if perhaps I might be interested if any topics surfaced that were up my research alley. I enthusiastically said yes and she said she would watch for the itinerary as the date approached and let me know.

This is exciting to me. Not only does it open doors for academic networks and interdisciplinary interaction, but my relationship with my oncologist is turning in a direction that I really like. Now, I supposed I understand that it's important to maintain certain boundaries, but it's nice to be able to talk to her about cancer-related topics that aren't necessarily tied to me and my treatment. I think that when you are trusting someone with your treatment and your life, you want to be something more than just another patient. You want to see them as a person and you want them to see you as a person - with thoughts and ideas and contributions to make - to matter to one another (to quote an earlier post).

It is completely and utterly cool.


Thursday, March 8, 2012


A little dexamethasone, a little Father Bob and life has lost most of its angry red tinge.


Wednesday, March 7, 2012

Angry Day

I want my fucking life back.

You know, the one with the future.

Thursday, February 2, 2012


That's what I've been doing. Grasping. Flailing. Clinging. Raising and waving my hand in the air. Signing up for way too much. Taking responsibility for things that are not mine or certainly not entirely mine. For the last couple of months I've been desperately attempting to fill every space possible with ME so that when I'm gone, there will be a gigantic hole and someone will notice the lack - the loss - the fact that I'm not there. I guess it comes down to that fear of annihilation. Poof! Gone! Like I never existed.

It's all ego, I know. It's the idea of having not have mattered that gnaws at me. That I have been so busy solving my own problems, some of which I brought on myself I might add, that I made no impact. No significant contributions. No matter.

So I volunteer for everything that comes up. If I see something not being taken care of or, in my opinion, mishandled, I take it on. Look at what I can do! I matter, damn it! I matter! Won't someone notice me now so that you'll notice when I'm gone?!

It comes from having cancer that's stable or in remission, I think. Life goes on as normal when it really, really isn't.

And then the guilt from being so pathetically unthankful that your cancer is stable and that you're not suffering your slippery way on the downhill slope.

Like I've said before, one of the biggest challenges of cancer is the head game. Lose it and you're doomed to die a thousand deaths before they actually plant you.