Come See Me In The Good Light (2025)

This is wonderful. Yes, it is about recurrent cancer. Yes, someone dies. Add to all this, as if it is not enough, that it is ovarian cancer, which is notoriously deadly and something that I have had. I am wholeheartedly recommending this, because it is deep and thoughtful, it depicts a head on approach to what is happening and there is still joy and love and a lust for life. Andrea Gibson is a spoken word poet and their wife is fellow poet Megan Falley. In 1921 they are diagnosed with ovarian cancer, which has inevitably spread. That is often, if not almost always true by the time one has symptoms. Then she has the terrible misfortune of having a platinum resistant tumor and she recurs within 6 months. This is the point at which there really is very little hope, but she wants to live. She wants to try everything, and she does. The film is as intimate as it gets, following Gibson into doctor’s appointments, curling up with them and Falley in bed, and eating meals soundtracked by the laughter of close friends. This is not fly-on-the-wall observant, but rather seat-at-the-table active. Structured also through Gibson’s reading of their poems, spliced in when narratively relevant, we come to see just how much they are synonymous with their work. There is no separation of the art and artist, as Gibson’s life is unabashedly unfiltered in their prose. So yes, it does not end well, but it is a beautiful tale well told, and as they say themself, we all face this, it is only a matter of when, not if.

Growing Your Hair

My hair had always been the same. I grows a few inches below my shoulder when I leave it to it's own devices, which is what I had done almost all of my adult life. I cut it myself, just trimming off the ends and otherwise leaving it on its own. When I was on the verge of turning 50 I briefly though about getting a grown up hair cut, but my husband's two sisters gasped in horror and I felt like I was breaking up the band, and literally said "I'll cut it when I need chemotherapy."

And lo and behold, a decade on, I needed chemotherapy--a lot of it and for a very long time, so I was bald for two years. When that ended, I just wasn't ready to let it go back into the wild. For one thing, my cancer had a terrible prognosis and I was pretty sure I would soon be making treatment choices that would not include keeping my hair. I am so grateful to have been wrong about that, but then there were the truly trivial things. My hair was a different color (black instead of brown) and less curly--I felt completely cheated--don't people usually get curlier hair? Well, not me. So it wasn't until I was nine years out and my dad was dying that I decided to let it go once again. I am not completely back to baseline, and I am certainly loads more gray, but it overall feels like a good choice.

Never Forget

September 11th, 2001 We were like everyone else--maybe more aware because we were not at work--glued to the television, watching planes hit one then the other tower of the WTC in New York City. It was a shocking event and all Americans remember what they were doing that day--the similar day for me was Kennedy's assasination, but I remember it because cartoons were cancelled the day after he was shot and that was what my 4 year old self was struck by. In addition to what everyone was feeling, I was also watching my youngest son get his last dose of chemotherapy. He had been diagnosed with a malignant brain tumor 15 months before, and had undergone surgery, radiation, followed by a grueling year of chemotherapy. I was, and remain, grateful for the medical care he received as well as the research that went on before his diagnosis to give him the chance at living beyond 5 years old, but it was the hardest thing that I have ever done. The terrosit attacks on our country cut short any sort of celebration that was planned to mark the momentous day, but in some ways that turned out to be fitting. When treatment ended so too ended the prolonged periods of compromised immunity, bloow transfusions, deadly infections, and prolonged hours in the hospital, but it began what every family who has had a family member survive cancer--the waiting period. The time is fraught with anxiety, and almost nobody gets it. The general public thinks the hard part is over, and it is true that the physically grueling part is (hopefully) behind you--but the emotionally draining part continues. So today we celebrate the 23 year anniversary of a successful end of cancer treatment.

Emotional Words and Cancer

The challenge (well, one of the challenges) of having a very visible bout with cancer is that amidst all of this, I feel like I am being judged. I don;t mean that people are being unkind.  Quiet the contrary, other than having a boss who actively tried to remove me from office while I was in the ICU with a bout of sepsis, people were uniformly fabulous to me.  Strangers were kind to me.  I had a very rocky road for a while but at no time did I feel uncared for.  Being sick is lonely business but I did not have people close to me shy away from me (for the most part).
What I mean is that the words around illness in general and cancer in particular have to do with implying you have control over things that you really have almost no control over at all.  Cancer is neither a battle nor a journey.  It is life, on a different path than you might choose.  It may begin at Point A, but there really is no end to it, so long as you are alive to live it.  It is just different, that is all.

Managing Reality

For some reason, the anxiety I have felt about my cancer relapsing has been harder to manage now,  two years out from my diagnosis, than it was at the very beginning.  As a trained scientist, I know that this is irrational.  My chances of not responding to treatment were very real in the beginning, as was the chance of relapse.  My odds are still no where near great, but the fact is that they were most decidedly worse quite recently, and I coped better.  Which goes to show that rationality does not play much of a role when it comes to worry. 
I often think that saying the thing that you fear out loud helps, and that has been a little bit true.  Face the worst and you can take some steps forward.  But it is definitely not a cure either, and so I have solidarity with all those who suffer from nagging doubts that can take over.  It will help me to prepare for the worst, while I hope for the best.

Weaponless Warrior

I was interviewing a medulloblastoma survivor recently and while my goal was to figure out if he would be a good fit for our advocacy committee, he made me think.  One of his interests is in the language that we use to talk about illness in general and cancer specifically.  He is particularly bothered by the battle imagery that implies that you are in some way able to fight the cancer, and if you lose, that somehow you are a failed warrior.  Or if you are cancer free that somehow you have prevailed.  The reality is so much different than that.  We are using medicines and therapies and surgeries in order to eradicate something that is actually a part of us gone terribly wrong rather than some foreign invader.  If the cancer is eradicated, it is accomplished by the treatment and not something that we the survivor has done.  We show up.  That is about all that we can control.  Implying otherwise puts an undue burden on both those who survive and those who do not.  That is what I did.  I showed up, month after month, and I am hoping for the very best.