When you know your life is fucking special

It’s a Friday night, and you are about to prepare your dinner, compliments of Hello Fresh and one of your oncologists. Next week’s box has been paid for by a scientist who helped discover the first molecule you were in clinical trial for. He has followed your story ever since, and along the way, you have become friends. He, like your oncologist, has a vested interest in keeping you alive. He has said that he shall be paying for Hello Fresh until two weeks after your second vaccine. This is personal.

You are sipping a rum cocktail concocted with a mixer sent in a gift package from a close friend in the Virgin Islands.

Yesterday, another dear friend (who you met online dating, of all places) brought you a pound of photos and a beautiful silk Cambodian scarf. Said friend is a (cough, cough) famous photographer and you could never afford to purchase one of his prints. This is a beyond amazing gift.

After dinner, you will be having a film fest. Another online dating find (Annie, dear Annie) is an experimental filmmaker and a formidable human being. In the last year she has become one of the most important people in your life. The two of you are going to write and produce an opera together. But tonight you’re going to watch the movies on her website first.

While preparing dinner you’re texting with two of your kids. One of them wants to borrow your dog and the other just qualified for a loan to buy his first house.

Dinner is delicious, as is your companion, a copy of Moby Dick. You text kid number three to ask if she’s ever read it and her response is ‘many times.’ Who knew. She is a wonder, then and now.

My little white dog sleeps at my feet. He, BTW, like so much in my life, was a gift–from the universe. Rescued, by my friend Brian and I. Returned to his family only to run away again. Fortunately, I had left my number with them and a phone call was placed to me asking if I wanted him. He is, after a bit of rehabilitation (not a bit, a lot) the best dog in the world.

So life is good. Fuck cancer. And all those other challenges? You can kiss my ass. This girl had a 57% response. To some, that may not sound like enough. But to me? It is everything.



On being not just an atheist but a parent of atheists

Today, the inauguration, was an incredibly moving day. However, as these things always are, there were portions that were uncomfortable for me, an atheist.

Even more so when one of my children texted me: ‘Irritates me that God is part of government. What happened to separation of church and state?’

This is the same child who was called to the principal’s office in junior high for refusing to say the pledge of allegiance (ok, his sister had the identical experience). When queried as to why, he responded that he could not recite something he did not believe in–that being the the segment ‘one nation under God.’ When I too was called to school, I defended my son’s right to hold fast to his own belief system, with the one caveat being that out of respect, he should stand. But that he should never have to repeat something that he did not feel to be true.

My own early experience with the Pledge of Allegiance was confusing. I would have been a kindergartner, in the early sixties. The first time we recited the pledge at school I loudly said Amen at the end, certain this was a prayer. I still recall the uncomfortable laughter of my classmates.

So why do we not have actual separation of church and state? That is a very good question. We are not, in fact, a Christian nation. The Pledge of Allegiance was written in 1892 by a socialist minister named Francis Bellamy and it contain no reference to religion. ‘One nation under God’ was added to the pledge by president Eisenhower in 1954, out of paranoia per communism and the association with atheism.

However, according to a report from the Pew Research Center, in 2019 26% of the US population identified as atheist, agnostic, or having belief in ‘nothing in particular’. And then are all those Americans of faiths other than Christianity.

So yeah. If you ask me, I would like to see all functions of state devoid of references to God. I tolerate these references because I am tolerant. Extraordinarily so. Please never forget nor disrespect that fact. Just as I do not disrespect you.

But my children? They may not be so understanding.


Shout out

A nice article in WebMD about lung cancer blogs. Mine is highlighted, along with those of my friends Janet Freeman Daly and Lisa Goldman. Also mentioned are the mutation specific groups on Facebook.

Janet relates that at one time she kept a list of all the lung cancer blogs, but now there are too many to do so and this is a good thing. I concur. Back when I started my blog (2009) there wasn’t a whole lot out there. It is wonderful to see so many people sharing their experiences.

Although the title of the article refers to the best blogs, I feel the take away is that the best blog is actually the one that clicks for you.

I started mine because the only other blogs I could find at that time were heavily faith inspired and I wanted the world to know that an irreverent atheist had a fighting chance at survival as well. It was also not lost on me that I had access to some cutting edge care, and that if I could share what I had learned, perhaps it could help others as well.

What I never counted on was how much writing a blog would do for me, the author. Or how it would assist me in building community.

Write on!


Utmost vigilance

I feel as if I have taken reasonable precautions since the news of this pandemic first broke. Masked, hands sanitized, avoiding most indoor spaces. Initially, I continued to meet friends for a meal as long as we could dine outside. I would also go hiking or for a walk at the beach, or ride in the car with someone with the windows rolled down.

The riskiest outings I took were likely to thrift stores, but only those that were rigid about mask wearing and six feet of space between customers. Interestingly, those venues have been far less crowded than the grocery store, another place I continued to frequent.

However, I am hunkering down. The newest strain of the COVID-19 virus, first identified in the UK, is much more contagious. My health care providers urged caution, and one of them even gave me a gift certificate to Hello Fresh, one of the meal services that drops recipes and ingredients at your door.

Of concern to me is the fact that I have gotten sick not once but twice in the past few weeks. First the flu and now either strep throat (waiting on a culture) or a virus. Both times I was also tested for COVID and was, fortunately, negative. However, if I can be walking around with a mask and constantly sanitizing my hands and still get sick, I suddenly feel a whole lot more vulnerable.

My studio is a safe space and there is no way to avoid going to the hospital, but aside from that, until that vaccine is ready (my team said it could yet be months), then I am going to be extra, extra careful. And I think you probably should be as well.


Alive and well…again

That ugly image of the open wound is my thumb. It is but one of the nine cuts that currently reside on my fingers. No amount of topical steroids, bag balm or liquid skin will make them go away.

I am also dealing with pustular acne. At the moment, maybe nine little spots. I am given to understand that it can get a lot worse.

One is supposed to leave this sort of thing alone. However, I dare you to simply walk around with a pus-filled little (thank god for little) lesion on your face. No, my ego is sound but not that sound. Anything with the word pus in it must go.

Fortunately the topical antibiotic seems to help. Help is nice but I’m shooting for eradication.

I share this with you (TMI, I know) because, once again, I feel it is important to stress, illustrate, underscore the hoops that those of us with cancer will jump through just to stay alive.

Yeah, I am thrilled about that 57% response. Beats no response or progression all to hell. However, side effects that include spontaneously splitting finger tips and acne of the pustular variety are their own special form of devil’s stew.

So ye who are naturally resplendent in health, rejoice. And regard, with both compassion and respect, your fellows who endeavor to become healthy through unnatural means.

Yours, in both gratitude and frustration.



The numbers are in

What you are looking at are my before and after scans. Evidently I was mistaken about any previous scans after starting the trial–this is my first one. Out the door goes the fever theory (maybe–I kinda like the image of the cancer being incinerated). At any rate, as I am on my back while in the scanner, that is my left upper lobe on the right side of each individual image, and my right on the left. And the scan on the left is the most recent one.

This represents, according to RECIST, a 57% response. If you look closely, there was a whole wad of schmutz on the bottom of my left lobe which has just about disappeared. And the greatest area of consolidation, on the upper right of that lobe, is much less diffuse; some adjacent tumor smaller. There was also some activity beginning on the bottom of my right lobe which is no longer discernible. Without question there’s more unimpeded volume/room for air to circulate–ie: breathe.

Just call me a happy camper. Next on the agenda? I want to boost that response to 70%. And then I plan on sustaining it.


Self survival

How did I do it. Emerge intact.

2020 was a beast. 2019 the hellish hors’doeuvre.

Two awful landlords, two impossible moves. Three clinical trials. One full year of infusion and all its attendant side effects with a few unexpected ones thrown in just for fun. A global pandemic. Business partners who (ahem) took financial liberties.

Becoming increasingly breathless, dealing with alopecia as well as mucositis and skin issues, I somehow continued to online date. That was, in retrospect, insanity.

That I have emerged, not only alive, but on the road to some sort of recovery, self esteem alive and well, boy howdy. Implausible. Unlikely as fuck. But, for the record, true. This, I can vouch for.


That dog, those boots, these lungs

Kumo and I just returned from our second walk today, during which I was taking my customary long strides and deep, deep breaths.

Two weeks ago this was not possible. My fitness had declined to the point that it was, frankly, becoming more difficult to move around.

My lungs have been through a hell of a lot. Not once, not twice—again and again over a period of sixteen plus years. And yet, given the opportunity, they are still capable of a good deal of bounce back. This is something I do not take for granted.

Three weeks ago I would have said that it was unlikely I’d be here for next Christmas. Now I am back to measuring time in years versus months.

Isn’t medical research a remarkable thing.



No longer overdrawn

Success confirmed

Although I don’t have actual RECIST measurements back from the trial radiologist, I do have the assessment of my two oncologists. A “Wow, they do look great!” and a “‘Flipping amazing’ just about sums it up.” And then there was my friend Dr. Jack West’s comments from twitter, which I don’t imagine he would object to my sharing:

Yesterday was all about personal celebration, but today I thought about the greater impact. When I entered this trial, I was advised that the best response had been stability. Although that wasn’t going to be good enough, it was what I was going for. Today I confirmed with Dr. Lin that my scans likely represent between a 50% and 70% response. Which is a heck of a departure from stability. I also confirmed that up until yesterday, stability was still the best overall response.

Today I imagined researchers, other cancer patients, and even pharma execs doing the happy dance. This is so much more than a personal victory–a response of this magnitude represents capital H Hope.

So yeah, this a BFD. And I couldn’t be more pleased.