Did You Ever Think Life Was Gonna Be This Way?

I have a confession to make: I've been trying to write a memoir about my life with cancer.  My second confession is that said memoir isn't very good. As a writer, a reader, a parent, a friend, a daughter, a patient - my failures thus far are frustrating and annoying me to no end. I had such big plans! An ambitious scope and agenda! An excellent, fancy title and all sorts of intellectual discussion about that title and why it matters. But I had an epiphany yesterday, as I sat down to write  yet again and wound up confounded: I need to stop trying so hard. I envisioned this project as a Project, a Statement, a Masterpiece.  And these expectations have lead to some cringe-worthy and overblown results. Ugh. The good news is that writers get to keep writing, and none other than Stephen King himself has given me permission! He told me, "you can, you should, and if you're brave enough to start, you will .  Writing is magic, as much the water of life as any other creati...

Somewhere, right now, someone is getting life changing news. Is it good news - “The biopsy was benign.” “The treatment worked!” “You’re NED.” - and they are exhaling all the way down to their toes? or bad - “Your scans show growth.” “You have cancer.” “We weren’t able to get all of it.” - and the inhale is sharp and tight, and they can’t get enough air? Each of these possibilities are becoming reality right now, somewhere. Tred lightly today; someone is having their heart broken. Someone is lighter than air. Someone is bleeding themselves into yet another test tube, and drumming their fingers while they wait for the bloodwork to come back. Someone is losing her hair. Someone is accepting exuberant hugs from their children and crying huge, heated tears. Someone is taking a tentative step into the next chapter of their life right now. Tred softly.  Speak quietly, in reverence for the pain. Tred softly; let the energy of the great world thrum through the feet of those who need to be g...

Supplemental oxygen. Like the rest of the technological advances and innovations that help keep me alive, I have mixed feelings about it. My lungs have had a difficult time with various treatments, I have several lung mets, and we live at 5,000 feet, which all adds up to slowly deteriorating oxygen capabilities for yours truly. I’ve found myself using it more and more often, and while I’m grateful for the relatively easy fix, there’s also the practical reality that oxygen means being hooked up to tubing and cannulas sticking up your nose. This is especially irritating when you have a cold - which is ironic, because of course it’s when you need a little extra help more than ever! Woe be the oxygen dependent who fails to carry Kleenex in her pocket, is all I’m saying.  When I’m out and about, I have little O2 concentrators I can take with me. The larger one is called O2D2 and he’s been in the family for a couple of years. The littlest one is Double-O, because she’s super sly and eas...

PSA: Yep, this entry is about faith and belief and God and all of it. If you're not interested, feel free to sit this one out. If you have a faith practice and disagree with my views, I'm completely comfortable with that. I'm not comfortable, however, with debating the merits of one faith over another or the debasement of any religious tradition. Please keep this in mind before posting. Thank you and Blessed Be. Over the years of my struggle with cancer, I've often pointed out and repeated to myself that I have angels. I do. Angels who have been in the guise of family and friends, offering us everything from dinners to dogsitting, sending comfort and love and little treats to me and my children. Angels who have prayed for me without ceasing, from all the corners of the Earth, and among all major religions. I've had several former students fold my name into the Wailing Wall. Christian prayer groups keep me on their lists. A friend of my dad's prayed (and contin...

So. I haven't been on here for a month. That was not by design. Here's the thing: I've reduced myself into the shadows. Over the course of the last month, now that I stop to think about it, I've stopped posting on social media, stopped writing, stopped driving unless absolutely necessary, stopped buying groceries, stopped going outside (again, unless necessary), stopped writing - my blogs, my fiction, my daily journals, stopped going to yoga. Stopped walking to the coffeeshop.  Haven't even texted much. I don't even sit at my desk anymore, or read about world affairs. And this week? Ugh. This week, I didn't get out of bed until my mom came over and bought me lunch on Tuesday. And on Monday, I flat out refused to walk to get lunch with my husband. I went to bed last night at 7pm.  Why? It's a good question. The answer is fear and anxiety. Cancer is scary and anxiety inducing, right? Right. But I've suffered from anxiety issues almost my entire life. ...

The last few weeks have been a bit hectic for me. We decided to end my trial participation due to tumor growth (about a cm on each of my 2 largest tumors, which are in my lungs) and to start a new course of chemo. As I waited for the insurance approval to pour a new kind of poison into my body, I felt a little sorry for myself. I felt, in fact, like the guy in Flowers for Algernon. You know that book? The main character, a mentally disabled man named Charlie, is chosen for surgery to increase his intelligence, but the effects eventually wear off and his cognitive abilities revert to their original state. The worst part is that he knows it's going to happen. I'm no Charlie, but standing at the side of the proverbial pool after 8 months of swimming along chemo-free (no chemo brain, no toxic fug, no being able to smell chemicals on my skin, etc.), I was exquisitely aware of what I was walking away from - and back into. It gave me the shivers. And then I started my new chemo, and ...

How's that for a good title?! That's right. I'm alive and (mostly) well. This is the quick version because I've been writing another blog post that has gotten pretty deep and needs editing and revising before I can publish it. I hope to share that this week, before all of the current events I reference get lost in the void. So, here's the latest. Last Monday, I awoke at un ungodly hour and shuffled over to the hospital for scans: one CT (no contrast, because I'm allergic to CT contrast dye, which was fun to find out) for the lungs, and MRIs for the abdomen and pelvis. Within hours, I met with my oncologist and we looked at the CT scans (MRIs take longer and there was something wrong with some technology somewhere on campus, which made the wait even longer), and quickly discovered that the clinical trial in which I had been taking part for the last 6 months was no longer working - scans showed that my existing tumors, which are in my lungs, had grown. Without t...

We saw Natalie Merchant in concert (Natalie Merchant: Three Decades of Music) last night. I've been a fan since I stumbled upon her first album with 10,000 Maniacs, In My Tribe , in a music shop in Indiana all the way back in 1988. So I've been around for her entire music career - and she's been around for most of my life.  It was so satisfying to see her last night, for a number of reasons. I haven't listened to her in a while, and so just getting a full blast of so many of her greatest songs was like a lullaby to my heart. And to see her dancing just like she did back when I last saw her in concert, in 1992 or 1993, shored me up a little. Some things remain, even as the world turns and you change from a 13 year old discovering music on her own to me, 42 and criticizing myself as I look in the mirror even as I continue to marvel over all that my body has endured over the decades (especially the last decade - two pregnancies, two years of nursing, and then four yea...

I'm sitting in my study, alone (and awake) in the house for the first time since the end of May. The real "junebugs" are children, clamoring for crafts, experiments, trips to the pool, dessert. Don't get me wrong -  I love the way their hair smells after a day spent in the sun, and I love riding bikes around our neighborhood and taking walks to the coffeeshop. I love hanging out watching "Friends" with my daughter, and reading books at night with my son.  But it doesn't make for much alone time. And the solitude I have goes by so quickly that I haven't really gotten much done. After binging on apocalyptic sounding media reports for days and weeks on end, I finally convinced myself to set them aside for the weekend. To let my soul fill up with sun, and hope, and possibility. And it was a wonderful respite. I read a book about bees and another  book about a hermit , and I watched the entire first season of A Handmaid's Tale! All restful things. A...

Now that I've versed you a bit on the big picture, it's time to share clinical trial life in the form of the little picture: that is, moi. Immunotherapies work differently than chemotherapies. The latter just doses you with toxic chemicals that have been shown to do a reasonably good job at killing cancer cells without killing so many healthy cells that it, well, kills you. The former helps your immune system to do its job better. For instance, the durvalumab that I take is a PD-L1 inhibitor. My understanding (and anyone who is qualified to correct me or add additional info, please do!) is that this drug stops the body ("inhibits" it, get it?) from making the kind of protein (PD-L1) that some cancer cells smear all over themselves in order to hide in plain sight. So if my cancer cells were producing a lot of PD-L1 - well, they aren't anymore. And instead, as I mentioned in the last post, the cancer cell is naked and being pointed out and laughed at. The seco...

With the first few months of my clinical trial behind me and the initial scans showing positive news, I'm now in a position to offer meaningful information and perspectives about the trial in which I'm taking part. I also think it might be useful to explain a little bit about the clinical trial process, because a number of loved ones have admitted that they're somewhat confused about what exactly taking part in a trial means. So, let's dive right in!  In order for a prescription medication to be approved for use in the United States, it must undergo rigorous testing and be approved by the US Food and Drug Administration (FDA).  There have been debates recently about whether the FDA's approval process for prescription drugs is too arduous and time-consuming - but personally, I support the extensive data collection and testing process. When you're offered a drug that could be the difference between life and death, you sorta want to know that said drug has bee...

Let's see...last we chatted, I'd been wide eyed and sleepless, waiting for scan results (and bloodwork, too). Wednesday night was scan night - chest, abdomen, pelvis - and we met with my oncologist on Thursday morning. As usual, he sent in a surrogate first. Usually it was his fellow, but today it was the hematology/oncology fellow. He entered, said hello, we pretended we knew each other, and he sat down at the computer. "So," he said as he accessed my files, "The scans were unremarkable but for these blood clots we're seeing in the portal vein system...let's take a look." Nick and I looked at each other. "Sorry - what?" I said. "Blood clots?" And he opened up one of my scans. "Yes...here we go. Let's take a look."  At this point, I had to interrupt him. "So, wait," I said. "What did you mean by unremarkable scans? There's no new areas of concern? Has there been growth in my lung lesions?" Fin...

The first thing you need to know is that I'm claustrophobic. It's a fun phobia to have, because it manifests itself in all kinds of weird ways. It's not just that I hate small, enclosed spaces - it's that I can't breathe when I am in them, and thus the fear turns into a panic attack, and a panic attack spirals into a full on respiratory emergency these days, what with my compromised lungs and all. So, you know, I do my best to not jump into coffins or elevators or airplanes and whatever. But sometimes, the small, enclosed spaces come to you, and you have no choice. That would be the MRI machine. I tried to smuggle my phone in to take pictures, but they're really, really strict about what's allowed in the MRI room, because the MRI is basically a GIGANTIC magnet, and so anything with metal or anything affected by magnets aren't allowed in the room. Hell, I'm not even allowed into the super high powered MRI because I have a copper IUD (sorry if tha...

Ever since I learned the term, I've hated it: "cancerversary." I mean, who the hell wants to celebrate cancer? Who wants that rubbing up against celebratory anniversaries of love and growth? Not me.  The bottom line is this: words matter.  If you pay close attention to my discussions and conversations around my disease, you might notice that I don't use the word "cancer" very often, and I don't use the word "tumor" (*shudder*), either. It's part and parcel of my own ongoing efforts to assert power over my life, my health, my body.  Personally, I also am not a big fan of the "warrior" mentality.  Don't get me wrong: there are days when nothing else will do, and fighting through a feeling, a complication, a recovery, a piece of disagreeable news is the only way for me to get from one end to the other. But I've never been a fan of war, and I find the concept of going to war against - let's face it - myself very hard ...