Category Archives: Uncategorized

Gratitude for those who choose to be in this space

I have always been a person who cares. Inequality, environmental issues, criminal justice reform.

If you were my roommate in college, you would have had to put up with the kitchen cupboard I turned into a bulletin board covered in newspaper articles. Now facebook is my podium.

One cause that was never on my radar was lung cancer. That is, until I was diagnosed back in 2005. Even then, it would take another three years and being restaged to IV, before I became involved in advocacy.

The majority of the other advocates/activists I know also have stage IV lung cancer. But there are a remarkable subset who were diagnosed (and remain) at an early stage. Ostensibly they could have walked away from this world. And how about the spouses, partners, parents, children, caregivers, friends, family, widows and widowers who don’t have lung cancer at all.

We–those of us with advanced disease–couldn’t do it without them.

To choose to advocate for lung cancer patients–even with all of the bias, stigma and an incredibly high mortality rate–that takes a lot of commitment, courage, and compassion.

So I just want to say thank you for this extraordinary expression of love.

Not only does it make us feel cared for, it underscores the fact that we are like one big family. And that is a formidable feeling.

How to extrovert (in a pandemic)

My endoscopy on Monday indicated a normal esophagus. My first thought was that maybe I was just a big flipping baby but my oncologist assured me it simply meant that the discomfort was indeed induced by drug. We decided to hold off one more week—bless this trial for having a four week window. I will return for my next infusion on Wednesday–almost seven weeks after the previous one.

Traveling to the endoscopy was not something I could do alone, as I was sedated. My friend Marc picked me up in the morning, wearing a mask (as did I). He has a small sports car so I rode in the back seat. Brian, also wearing a mask, drove me home. He had totally wiped down the passenger side. Bless my friends for being both so thoughtful and protective.

On Tuesday I went on another date–hiking at an Audubon center in Concord NH. Wednesday a curbside vet appointment for Kumo (little boy has periodontal disease)–he will require a cleaning and some extractions this coming Thursday.

I also managed a couple of zoom meetings, five visits to the studio, another walk with a friend and a picnic in NH. In all cases masks were worn and social distancing observed. Texts and phone calls with my kids, my friends, and a handful of my exes (who are now friends 😉 ). Zooming with Chris Draft (we have a project underway). A trip to the liquor and grocery store.

Dinner on a deck tonight with another friend and her fiancee. Another hiking/dinner al fresco date tomorrow.

Damned if I am not getting the hang of this. It is different but life as we currently know it.

Next week I will take part in a zoom meeting, appear on a virtual panel on precision medicine, and continue conversations with pharma.

There is a chance that my next infusion is going to hit me hard. I am glad I have had a break in which to build stamina–both emotionally and physically. At the moment, I feel GREAT. I think all the interactions with others have played a big role as well–this girl needs people. Big time.

xo

Enough is enough

Life is not fair. Despite hearing from childhood that ‘you can be whatever you want to be’ it’s not that simple. If you are born poor, you’re likely to stay poor. And if your parents were wealthy, chances are you were afforded opportunities and privileges denied to most. A solid head start.

But boy do we love overcomers. First, it feeds into this mythology. Which alleviates guilt (I have, and you do not, but you could if you only tried hard enough).

The loose use of the word hero during the pandemic has been part of this particular story line. Frontline workers. Rather than supplying them the actual support they need (PPE, higher wages, true recognition of the essential services they provide) they have been labeled heroes. Try to cash that one at the bank.

I can say this with confidence. From personal experience. Even though I was born white and into a middle class family, I already had several marks against me. First, I was a girl. Second, my family was deeply dysfunctional.

At the age of twenty four I got pregnant. I didn’t really know the father–we had been dating for six weeks. My family had long ago split into two equally unhealthy arms (what’s worse than two dysfunctional parents? Four). My mother and stepfather urged an abortion and then demanded marriage. I refused the first but tearfully caved on the latter.

Within a year my stepfather would fly his small aircraft into the face of a cliff on his 65th birthday. Suicide. Two weeks later I discovered I was pregnant for the second time and that my short marriage was over. My mother was now bankrupt so I asked my father and stepmother if I could move in with them for a short time. The answer was no.

By the time my daughter was two, it was obvious she was being sexually abused by her biological father. I was only twenty six, an unmarried mother of two, but I did my best to deal with the system and to protect my children. Ultimately I would fail, as the abuse continued.

First we were on food stamps, but then welfare. And you know what my gold star was? Everyone told me what a good mother I was. Truth is, I was in way over my head, totally overwhelmed, and could have used some fucking help.

It’s been a struggle in one way or another ever since. I am an overcomer. The way I handle adversity makes others feel better.

But just because I keep showing up for practice, it doesn’t mean I’m not aware that I got a pretty shitty role in this play.

So back to the present. The anger, the outrage, the demonstrations and the looting. There is a fixation on the latter. And yet no one should be surprised.

Sure, these may be ‘lawless’ individuals who are taking advantage of the chaos. But you know what? That term looter, like hero, is often applied loosely. Someone who breaks into a store and steals some shoes is, to my mind, no more of a looter than someone who is obscenely wealthy. The difference is one is protected by our laws whereas the other, if caught, will be prosecuted. The rich will stay rich and the poor will get poorer.

Although I would not go so far as to say I am an anarchist (I like some order), my ideology is radical. I hate racism, deplore our criminal justice system, and feel that capitalism is at the root of so much that is evil.

Life is not fair. Anger is justified. Nobody should be poor, but more importantly, absolutely no one deserves to be filthy rich. Having a billion dollars should be a crime.

And until we all acknowledge and own this inequity, the world is going to continue to explode. As human beings, we can do better. We can heal the hurts, stop trying to justify injustice, quit trashing our home–I’m not talking about looting, but rather the destruction of nature and the environment.

When someone tells me they are sorry that I have cancer, I invariably respond with ‘it’s ok.’ Which of course makes them feel better. Perhaps I should just thank them for acknowledging my bad luck.

My own response to inequity is to use what I have to address it. Would I love to be a philanthropist? Sure. But I have no talent for acquiring money. And if I did, I would be ashamed to live in luxury while others struggle in poverty.

That is what drives my activism. I have been given more time. And although I can’t share it, I can do what I can to make sure others are given a similar opportunity.

The world is hurting. Big time and in so many different ways. We can respond by hiding in our bunker and dimming the lights. Or we can acknowledge that we are all in this together—one big, giant, screwed up family. And if we want to end this cycle of abuse, well, it’s time we owned our problems. Stop turning a blind eye. Work together. Pass the plate. Do our best to make certain everyone is given an equal portion.

Grace versus gluttony.

This matters

Not long after my diagnosis fifteen years ago, I watched a documentary called The Boys of Baraka. At the time I was feeling sorry myself–a forty five year old never smoker with lung cancer.

That documentary humbled me. As bad as cancer was, I was all too aware of my extraordinary privilege. I had a whole medical team trying to save me and frankly, my chances of survival were likely greater than a young black boy from Baltimore.

Life is not fair. I have had cancer for one quarter of my life—a long, long time. However, if you have dark skin, you will face a special set of circumstances from the moment you are born until you die.

Whatever you want to call it—racism, inequality, injustice—this shit is real.

Sadly, when it comes to caring, humans practice a psychological nimbyism. If it’s not in their backyard, well, not their problem.

As someone with lung cancer, I am only too aware of this sort of bias. Because my cancer has historically been associated with smoking, there is a misguided perception that A. we brought this upon ourselves and B. that if you don’t smoke, lung cancer is preventable.

Well we all know that’s not true. If you have lungs, you can get lung cancer. Logically speaking, everyone should be concerned.

So back to racism. Again, it impacts everyone. And if you are not anti-racist, well, then you are pro. There is no gray area here.

People are people. It is absolutely unacceptable that some have to live in fear because they have more melanin in their skin. Black Lives Matter is such an unassuming statement (of course they matter!). And that is the point. No one should have to justify their existence.

I hate filling out the race section on forms. In part, because I believe race itself is a human construct but also because I feel categorizing people promulgates so much of what is problematic. However, even my viewpoint is borne of privilege–my race has defined my experience in a very different way than it has for my sister who is black.

The reason I dislike categories? They are divisive. What we need now is unity. All of us, as human beings, need to stand together. We need to care about each other and to truly believe that what is bad for one, is bad for all.

There will be no onlookers. We are all participants, either actively or through our complacency.

Care. Vote. Protest. Love.

Worn and worn again

When I was younger I hated losing anything. I feel this had something to do with my high level of anxiety—and a fear of the unknown. I actually preferred breaking an object to losing it—because the outcome was not an uncertainty.

Life has dealt me a hefty dose of apprehensive scenarios. I am almost comfortable with unknown outcomes.

However, when it comes to living, I have some definite preferences. Not lost, not broken, but rather worn. Ridden to the bone. Worn out—all the way out.

That is my goal.

Yes. I have made it to sixty—once unascertainable. With any luck (and some formidable science), I shall be here for a few more years. Five would be most excellent, ten splendid, twenty, well…one can dream. Age is not an issue, rather it is most decidedly the objective.

Gray hair, wrinkles, jowls…bring it. All of it. My body is a vehicle and I intend to run that odometer right into the ground.

xo

Crazy, crazy world

Tomorrow I shall drive to Dover NH for my second COVID-19 swab. Not because I am symptomatic but rather because I am now scheduled for an endoscopy on Monday and this is a requirement.

The endoscopy is indicated by the fact that my throat/esophagus is yet painful, almost five and 1/2 weeks out from my last infusion. Not the usual course of events. So the plan is to see if something else–perhaps a secondary infection–is responsible for my discomfort.

I am on board because part of being a participant in a phase I clinical trial is parsing out the safety profile/side effects of drug. Although I am the only person to (thus far) report mucositis effects of such sustained extant, it does not mean I am an anomaly. I might simply be the first.

This is the responsibility of being in a clinical trial that is often under appreciated. Phase I is not to test for efficacy but rather for safety. My primary responsibility is to not only take drug, but also to report back side effects.

It is empowering but also can cause one to doubt oneself. In phase I you are often the first (and sometimes only) person to report a particular side effect. However, I take this seriously. Like an astronaut, I am traveling to places uncharted and it is my obligation to note and record what I see and experience.

Duty noted.

Make some noise

When I was in junior high one of my teachers took me out into the hall, grabbed me by the shoulders and slammed me up against a locker. ‘I’m tired of your bitching, Olson.’ This was before the advent of cell phones–he would never get away with that now. As it was, this teacher was later promoted to principal.

I was small, shy and relatively quiet as a child. But I never hesitated to speak up if I felt something was unfair.

Undoubtedly this made life more difficult for me, but I simply could not save myself (or sometimes others) the ensuing trouble.

Being a child, girl, student, employee, tenant, single mother and wife have all made me more cognizant of social injustice. As has the double edged sword of clinical trial participation.

But I have no experience with what it is like to live with a darker complexion.

As a girl/woman, I have always had to be careful about where I went and particularly after dark. But people of color are being killed in broad daylight, by the very organization that is supposed to protect us. According to Wikipedia:

‘The police are a constituted body of persons empowered by a state to enforce the law, to ensure the safety, health and possessions of citizens, and to prevent crime and civil disorder. Their lawful powers include arrest and the legitimized use of force.

Those last five words have been blatantly abused. Driving while black (or walking, running, just being) are not a legitimate lead up to use of force.

I hate what is happening, again and again. I am angry–very, very angry. And imagine if I also had to be afraid? If my skin color made me or my children suspect?

There has to be an outlet for this anger. I would explain to my young children that although positive attention was first choice, negative attention (acting out) was still preferable to those who never said anything at all. This was in reference to classmates who would consistently get in trouble. ‘It is those who go unnoticed that I worry most about’ I would tell them.

We all need agency, and the confidence to stand up for ourselves. Of course, if doing so might get you killed, then that’s another issue.

This has to stop. But in order for that to happen there has to be solidarity. We must all demand that racial profiling end. And that those in power stop abusing it. And if they do, that they are prosecuted to the full extent of the law–the very law they supposedly represent.

The anxiety

It’s Tuesday. Although my mucositis is much improved I still have sores in my mouth and esophagus–almost five weeks after my last infusion.

I am scheduled for my fifth infusion on Thursday. However Dr. Lin called me this morning and it pushing it back another week–fortunately the trial allows for up to a four week delay.

Do I go for one more? Maybe even two? Wait until my next scan to decide?

Damn this is difficult.

My mood is so very improved and I suspect there is a direct relationship between positivity/motivation and feeling better. I am decidedly anxious that if I get another infusion, it will not only be my mouth that starts hurting again.

So I don’t know. My higher morale has also been correlative with a greater desire to survive. And the difficulty with clinical trials as they currently exist is that as a participant I am given very little latitude. Should I drop out there is no returning.

Chances are I’m going with infusion, simply because it places me in a position of greater options. But psychologically, this is a tough one.

I’m so very relieved that I have another week to think and hopefully heal.

OUT

I have been an out atheist since my late teens. Not a casual decision; hell, my first crush was on Jesus—that handsome man with long brown hair and a beard as depicted on the little print I received as a prize in Sunday School after memorizing the Lord’s Prayer.

No. I gave religion a lot of thought and ultimately simply could not suspend my disbelief.

Back then I was in the minority, or at least seemingly so. If others questioned their belief in God they kept it to themselves, something I never felt obligated to do.

Through the years there have been both multiple and in at least one case, ongoing campaigns to convert me. And….not gonna happen.

My atheism is not nothing–it is my own well thought out belief system. Although some would argue to the contrary, atheism is not synonymous with amorality. I have a strong moral compass, one that is dictated not by rules but rather by what is right. And being atheist certainly doesn’t mean I ‘hate’ God, something I was recently accused of. I also don’t believe in unicorns, but that doesn’t mean I hate unicorns.

Many if not most of my friends subscribe to one organized religion or another and I have always been respectful of their belief system. Unfortunately, the respect has not always gone both ways.

For the most part I have been extremely tolerant. I understand that when someone is trying to convert me they feel they are doing me a favor. But, you are not. I’m good here; happy atheist if you will.

A week ago a family member sent me a card. They acknowledged how hard I have fought to stay alive: ‘most people would have given up years ago.’ But that was followed with this piece of advice; ‘Perhaps God is waiting for you to choose eternal life with Him.’

I cried. And then I drank too much.

The next morning I made some decisions. No more Ms Nice Guy when I am being blatantly disrespected.

Fortunately, reverse psychology often works for me. Case in point, in junior high my band teacher told me I would never master my instrument (a flute) because I had a cupid’s bow on my upper lip. Well damned if this girl didn’t go on to sit in first chair in both band and orchestra. If you tell me I can’t, I likely will.

But if you try to get me to do something that is in conflict with my personal beliefs, well, don’t even. I am open minded but I am not malleable.

And if there is a God, well they (I simply can’t gender something like God) are going to have to wait. I am in no hurry to find out if I am right or wrong.

None whatsoever.

xo

Could this be….MOJO?

Still dealing with those darn mouth sores and the radiologist’s interpretation of my latest scan would seem to indicate stability (not the word used—rather ‘unchanged’). This is going to be a tough call–glad I have another week to heal and ponder whether I shall go for another infusion.

My date was fun and fine. Hard to say if there will be a second. Truth is, my cancer is easier for others to accept when I don’t look or act like I have cancer. The empirical evidence is that I have been ghosted (for those not privy to the parlance of online dating—when communication stops abruptly) on a rather frequent basis lately after talking and meeting both–and that did not happen previously. Bit of a hit to my ego but I am also a realist—I do get it.

However, (and this is important) I think I am falling in love with my own life again.

Yup. I now feel as if I walked through some deep and depressing valley for weeks on end. No fun, that, However, I also understood that the deprivation of human contact combined with extreme discomfort might allow for some personal growth. Sort of a back to the basics deep soul search.

I have been learning a lot about myself in isolation. Not all pretty but again, that is where I have the most potential for needed improvement. Facing my demons sort of thing. Depression, procrastination, a tendency to burrow in rather than reaching out. I am working on all of this. Slowly, but surely.

When I got up this morning I felt something akin to motivation. It’s been a long time. Rather than heading back to bed, I have been getting things done. Writing, paying bills, talking to a reporter. Not bad for one morning. This afternoon I am heading to my studio. On Sunday my friend Jim and my son Peter are going to assist me in clearing out a storage unit with the rest of my art stuff. By next week I hope to have a regular schedule established—writing in the morning, art in the afternoon. Oh yeah, and it’s time to start exercising again as well.

The pandemic has imposed limitations but I am figuring out a way to work within them. My next goal is to reestablish a relationship with my old friends Hope and Joy.

xo