2018 July 17: Crying in the MRI and My Friend Jen

Honestly, I've been trying to write a post for what feels like forever about my friend Jen, who died of complications from metastatic colorectal cancer on 2 July. But every time I start, I can't seem to get it all together, so that one is going to have to wait a while, I guess. My grief and survivor guilt and sadness and anger and passion and hate for a disease I know so intimately - it all needs to percolate a little. But I'm not worried. Jen wouldn't have minded waiting to hear all of what I need to say.*

As a matter of fact, I was thinking of her - and of this blog post - last night, while I was inside the MRI machine. If you've never had the pleasure of being inside such a machine, it looks like this: 

Well, that's a fancy one that I found on the Interwebs. But you get the picture. They put you on the little stretcher there and zip you inside the little roundybout area. They give you earplugs and headphones (sometimes, they pump in music of your choice, which will be an important point in a moment) and then, if you're getting your abdomen and liver imaged like I am every 8-9 weeks, they tell you to hold your breath a bunch of times (so they can get good pictures) and push what I can only imagine are a bunch of buttons like the ones on the deck of the Death Star, and for each picture there's a lovely variety of SQUEALING AND KNOCKING AND REALLY LOUD SLAMMING OF GARBAGE CAN LIDS. Sometimes, it sounds like people are chunking concrete rocks at you! Other times, the whole thing vibrates and whirs like that 3-D journey ride at Disneyland! And don't forget to hold your breath the whole time, even if you're f*cking freaked out by the random SUPERLOUD sounds you hear! And even if you have lung problems that make it pretty difficult to hold your breath for more than, say, 15 seconds. Otherwise, oooooh! We're gonna have to do that series again.  

From the inside,  I usually can't see anything. This is not because it's dark but rather because I keep my eyes tightly closed, since I'm really claustrophobic and closing my eyes helps me keep from the aforementioned freaking out. So does a couple of Xanax, but both together are better.  And when the panic gets the better of me, as it does several times a scan, I will open my eyes and sometimes, my head is at the end of the tunnel and I can see out a little, or at least see the edge of the machine. And if not, I usually can at least tip my head back and see that there is a light at the end of the MRI tunnel. 

Anyway, last night I was in the machine, getting old car parts thrown at me and listening to the Indigo Girls station on Pandora, and I was thinking about Jen, and also about how much I hate being inside a damn MRI machine. But then I thought about Jen again, and how it's really unfair that she can't even be here to hate being inside the MRI machine anymore. So I started to cry, thinking about her, and that made me open my eyes. I was, as luck would have it, at the end of the tunnel. Inside the tunnel, for no reason I can clearly ascertain, there's a blue line that runs down the middle of it. It's exactly the same blue as painter's tape. You know that stuff? When my kids were little, I used it all the time. Not to tape up my house and paint, because I'm not insane or a girl who goes looking for trouble Trouble, but to make indoor hopscotch boards on the wooden floors and also to make little roads and stuff for matchbox cars to run around on (these went on the floors as well as the walls). Of course, I did not think this up myself but read about it on Babble or some other parenting site, because Pinterest, which surely has all sorts of painter's tape masterpieces and highway systems for you to geek out and/or lament over depending on how you're feeling about your parenting skills that day, did not yet exist. But I'm starting to digress. I mean, I did this same thing in the tunnel last night, and it made me think of my kids and how amazing it is that I've been able to parent them for the last 5 + years despite this stupid disease and that I was going to remind them tomorrow (so, today) that I used to make them indoor hopscotch boards and highways. And these thoughts converged with my Jen thoughts and how she wasn't around anymore and I just missed her. And so I cried a little more and suddenly it popped into my brain that I felt like a damn cannoli. You know, these little delicious Italian morsels: 

Mmmm. I totally felt like one, especially since I was swathed in this enormous white hospital gown that was flowing over me from end to end. And then I started laughing and I thought, OMG! Jen went to Italy in May! I'm pretty sure she stuck this idea in my head. And then I was all happy/sad...and THEN, a new song started on my headphones, and guess what?! It was one of my favorite songs of all time, and it's not an Indigo Girls song at all, and it was a perfect little ghost-music paean to the friendship that Jen and I shared. It was the song "Trouble Me" by Natalie Merchant:  

Trouble me, disturb me

with all your cares and your worries

Trouble me, on the days when you feel spent

Why let your shoulders bend 

underneath this burden when

my back is sturdy and strong...

And that song really summed up my friendship with Jen. We had a lot in common besides cancer: parenting and books and politics and senses of humor and so on. She was funny, and kind, and thoughtful, and whip smart. We would have been friends anyway, we decided, even if cancer hadn't brought us together. But at the point in our lives when we did meet, we were both around 5 years into our stage IV cancer diagnoses. And so we talked about the things that none of our non-cancer friends could quite understand, like how much harder it was to thread the needle of parenting when you have metastatic cancer. I mean, our kids - they're badass WARRIORS and they don't even realize it. Because we're not the only ones who have been living the existence of cancer, you know? We're not the only ones who have been forced to knuckle under to the realities of cancer, and cancer treatments,  and cancer uncertainties, and cancer-related sickness, and the anxieties and scariness of life with cancer - BIG cancer. We're not the only ones who have been frogmarched to the end of a long and ugly plank with the alligators circling below. We've had to bring our kids along, whether they liked it or not, whether they realized it or not (my littlest was barely four when our trip to the Upside Down began), even though there was no way they could have known when the whole wretched mess began how difficult the trip would become, how utterly life-changing. 

All we wanted, we agreed as moms, was for our kids to live as normally as possible. As unencumbered as we, working with our friends and our families and those angels in our midst, were able to make it for them. In what came to be the last weeks of Jen's life, whenever we checked in, I'd ask about her daughter. How is P? I would say. And she would come back, inevitably, with the same answer, every time, and it was along the lines of the idea that her daughter's life was continuing on, as uninterrupted as possible. As normal as normal could be, under the circumstances. Her dad was with her daughter. She was out with friends. She was at an event. She was hanging with family. This was what kept Jen, I think, from really hitting a level of utter despair, even as her life became increasingly tenuous and her pain became increasingly awful. Her daughter was going to be okay; her life was continuing to blossom. This didn't mean that she was keeping the truth from her kid, and that was something we talked about, too. Her daughter didn't always want to know details, and neither does mine. And that's okay. How much do they need to know, really? How much can they bear to hear about that they don't already live? But we talked about separating out the "want to know" stuff from the "need to know" stuff, and how to go about making those determinations, and how to communicate them. It's hard. No one gives you a manual about how to talk about your condition, and certainly not about how to tell your kids about what you're going through. And then those kids, they keep growing and changing, and their needs and capabilities change, too, from month to month and year to year, even as your health status changes, which it does, and small crises become big ones before your very eyes, and things that seem huge wind up not being so important after a week or a month or a year. How do you try to keep your child's world spinning on its axis even as your own axis whips about wildly itself? There aren't any easy answers. Or any thorough answers, even, at all.

Yeah. We talked about that kind of stuff a lot (when we weren't trying to make each other laugh, or helping each other through various awful or annoying or painful or dumb moments). We talked about being moms. About keeping life normal under what, for most of the world (thank goodness), is very abnormal circumstances indeed. That was the last gift she could give P - as much normalcy as possible, for as long as possible. And that was a Herculean task. Have no doubts about it, my dear readers. It was an aching, all-encompassing, completely driven by deep and abiding WHOLE BODY loving effort that continued, I have zero doubt, up until the day she died (we last chatted three days before she passed). She loved her daughter like I love my children: wholly, completely, adoringly, fiercely. She lived for her.  She kept being a mama until the very last minute, and I'm certain that wasn't the end of her efforts. Knowing Jen, I know she set in motion relationships and kindnesses and networks that would continue to give her daughter support and love and humor and mothering in spades. 

So all those thoughts shifted through me in the MRI last night, and I sang along with Natalie and thanked the Universe and my angels that Jen had been sent my way, and hoped she was maybe even watching over me now. And then I had the beautiful opportunity to climb out of my cannoli case and make my way home, and I checked in with a dear friend who was helping me mom the next day, and I went to bed and tried to sleep but it wasn't all that successful an endeavor, because I had scan review coming up in a few hours, and a migraine blooming on the right side of my skull, and then I had some decidedly weird dreams when I did fall asleep.

And when I woke up, at the gentle touch of my loving husband and let him stick me with a needle full of medicine like he does every morning even though he absolutely hates needles, I got dressed. And I kissed my baby boy good morning and kissed my baby girl a bit, too, and caressed their young faces and smiled into their bright (although sleepy) eyes, and Nick and I drove to the hospital. I thought of Jen then, and I thought of her as I looked at my scans with my doctor and learned that things were stable and that we were moving to a maintenance mode with my infusions for the time being, and I thought of her as I slipped into the private room they gave me in infusion because that migraine had showed up big time. And I think of her now as I marvel at the fact that my disease is pretty stable right now, and although that's awesome for me, I wish like hell that I could share my news with Jen, or that she would be able to call or text me some day, weeks from now, and tell me similar news. But she never will be able to now. 

I miss her. I love life. Sometimes the paradox of cancer living is really hard to share.

Jen and me in March

____________________

* Now that you're at the end of this post, you know why I have an asterisk here. I ended up writing about Jen after all. But I didn't want to change the beginning because I still have more to tell you about her, and how much richer she made my life.