June 2018 – Girl Meets Cancer

I’ve been living with my diagnosis for just over four months now, and I’m continually surprised at how my experience of the news has evolved. I recognize within myself the changing landscape of emotions day to day, minute by minute. Now that I’m not purely on survival mode, this diagnosis has settled into the fabric of my identity. It’s not who I am, but it’s certainly a large part of my human experience.

Being diagnosed with cancer didn’t just change my relationship with myself, it changed my relationships. The way I interact with my coworkers, family, and friends has shifted in ways both subtle and dramatic.

If you’ll allow me, I’d like to explain what I mean using the analogy of a house fire. I chose this because it’s ostensibly imaginable and involves a lot of help. (Well, okay, the other reason being I’ve been watching a lot of This Is Us recently. ) It’s not a perfect analogy, but it communicates my point well enough.

Catching Fire

fire

When a house catches fire, hopefully someone alerts the authorities early enough and firefighters show up. My uncle was a volunteer firefighter, and I have fond memories of hanging out with him in the firehouse when I was younger. Here’s what I know: firefighters are unfathomably brave. They walk into blistering heat knowing their hat might melt to their scalp and they may leave needing medical care of their own. Without firefighters, buildings would burn right to the ground and leave so many without a place to call home.

Eventually, when their job is done, the firefighters leave. After an appraisal, some guidance, and lots of complicated insurance steps I don’t understand, contractors and workers come in to help re-build the house. Anyone who has ever had remodeling or construction work completed can tell you: it takes a long time. Deadlines are set and then pushed back. Calendars are changed. Plywood frames seem to stand bare in the cold, unchanging and without progress. But construction workers are undeterred. They’re hardworking, show up day after day regardless of the working conditions, and stick it out so that someday, somebody can move back in.

There’s another group, too. It contains a wide range of people who aren’t as apparent at first. As the house is burning, there are some who aren’t quite sure what to do in an emergency, or they don’t think it right to intervene, since it appears everything is being taken care of. Maybe some people feel it’s best to stay out of the way and say some prayers that everyone gets out safely and or that rebuilding goes according to plan. Fires are pretty terrifying, so it’s understandable it strikes a chord of fear in some and they don’t want to get too close. Or maybe one of the pipes just burst in a neighboring home, and that person needs to get on it before their basement floods and their possessions are lost. And I’m fairly certain there are some people who are just staring at the moment, still shocked at the fire happening just down the block, on their very own street.

The Afterglow

Image courtesy of deviantart (psychonoir)

In case you haven’t caught on by now… I’m the house. And the homeowner. (I warned you this wasn’t a perfect analogy.)

When I was diagnosed, I was astonished at the number of people who rushed to help through their words, gestures, and thoughts. I received flowers, cards, text messages, and food. People offered me excursions to distract me from my circumstance, a place to stay in the city, their beautiful stories, their platelets: you name it, I received the offer. It was absolutely critical so soon after my diagnosis. If I didn’t have this outpouring of support during the first few days, I probably would have melted down completely. I’m so lucky to have these first-responders in my life.

In the weeks since, I’ve received less of the “emergency” response and moved into the builder experience. There’s not as many daily offers of help now that the smoke has died down, but a committed group shows up to check in and make sure things are on track. They’re the ones sending a text once a week, just to say hi. They’re the ones messaging me funny memes. Let it be known: these people are just as important the firefighters. They recognize that I’m not in a dire circumstance, but they can see that I’m currently down to the studs, and at times, in need of an extra pair of hands. I’m so lucky to have these foundation-layers in my life.

The third group is tough to describe at times because it’s less of a vocal and visible role. (I myself am not sure who’s entirely in it.) It could be that someone doesn’t feel it’s their place to reach out, or they’re more comfortable stepping back and sending some good thoughts my way. For many, there’s a good chance I haven’t heard that someone I’m otherwise close to is experiencing recent hardship or emotional trauma, and by all means, I WANT you to take care of yourself so you can be all that the world needs you to be. Just as I am lucky to have the firefighters and the contractors, I’m lucky to have the quiet support from people who want the best for me: I swear they are knitting and re-knitting the invisible wings I reach for and strap on my back on the hardest of days.

Truth Telling

What pains me most to admit is that there are people in my life who I expected to show up, and they haven’t. I don’t know why they aren’t able to be around (at least not yet). It’s embarrassing to admit because the number of these individuals pales in comparison to those in the other categories. But to omit this fact from an honest recording of my cancer experience would mean I’m not telling my full truth.

It doesn’t in any way detract from the volume of love, support, and good thoughts I’ve received from others. It’s just as though I expected someone to help me with a task, then something happened and they couldn’t make it, and I never got word. “Well, okay,” I think, and I try to make peace with it and not to take it personally. Because here’s the thing: despite them not being there when I expected them to arrive, I’m lucky to have them, too. Each of them had a role to play in my life in some way. I wouldn’t be who I am without their influence. Besides, who’s to say they won’t show up later?

I try to operate on the hypothesis that everyone is doing the best they can. It may sound spiritually enlightened… but it’s also just an easier way of getting through life without dramatizing too much. I believe deeply that it’s best to leave room for grace and generosity. I fully support giving people the benefit of the doubt. And regardless of whether or not they’re around now, no one is more worthy of that generosity then the incredible people who are part of my life.

A Housewarming: All Are Welcome

I’ll take any excuse I can to share a Fixer Upper dining room photo.

Here’s what I want you to know: very, very few people can be both a first responder and a foundation-layer, and that’s the way it is supposed to be. Your true, authentic response, whatever it may be, is perfect, valid, and absolutely necessary. There is no need to change who you are or how you respond.

Stop trying to be a builder if you’re a first responder: if you didn’t send me that text that first week after I was diagnosed, I may have not gotten through my first week of living with cancer.

Don’t guilt yourself because you weren’t a first responder and you’re here to build: your support now, in the quieter moments, is so, so needed.

And I promise you, it’s okay to sit this one out, my friend: you may need to be an observer in my experience so you can be the first responder or builder in someone else’s life. Go. I’ve got this. And they need you.

There are very few individuals who have the emotional bandwidth and stamina to show up day after day after day for my needs. I myself get exhausted with my own drama at times. I consider myself inordinately blessed to have more firefighter/builders than I can count on one hand, and I hold them close and try to tell them every day just how much I love them and appreciate them.

There’s a great passage in Elizabeth Gilbert’s book Eat, Pray, Love where Elizabeth describes the difference between her sister and herself through a short anecdote, which I’ll attempt to capture accurately here for you. When her family received the news that another family experienced a tragedy, Elizabeth’s first thought was “my goodness, that family needs such grace right now.” Her own sister responded,”that family needs casseroles,”

Whoever you are, no matter what you bring to the table (grace, casserole, or company), thank you for being part of my journey. I’m lucky to have you here.

700219991766ed45d89e9b559bb29246 — Fabulous rainbow image courtesy of pinterest.

I spent last night in the emergency room. On my list of things to do during the last week of school, this ranks far down towards the end, perhaps just above “give my kindergarteners espresso.”

First, some background. With my medication, I’m nearly always experiencing some form of nausea or loss of appetite. I’ll eat very little at a few meals, unable to choke down foods I previously loved; then I’ll be hungry a few meals later and try to eat as much as I can to take advantage of that window of opportunity. I have to eat even when I don’t feel like eating, which for anyone who has experienced it before, is a complicated issue. I’ve had people comment to me, “I’d love to have that problem!” or “It must be nice to feel like you can lose some weight.” These statements are really hard to hear. If I had my choice, I’d rather feel strong and healthy over sick and skinny, desmoid tumor or not. I suppose the “weight loss” impact might seem appealing, but without nutrition, my body doesn’t have the fuel it needs, which is exactly what happened this week.

At times my nausea is improved by eating (counterintuitive, I know) or at least subsides after a little food and a lot of rest. I spent Sunday laying low in my apartment: I did not feel great upon waking, but I managed to eat some oatmeal by the early afternoon, took a nap, finished a book, and felt better. On Monday, little appealed to me at lunch, but I made one of my go-to dinners: a falafel wrap with spinach, cucumber, tomato, and goddess dressing. I got to bed a bit early and decided I’d discuss the nausea with my oncologist the next day at my monthly appointment.

I never got to that appointment, because I was soon experiencing what I assumed as Stomach Virus Number Three of the past 30 days. I sent a text to my sister Jenna, who was scheduled to attend the appointment with me and is currently in nursing school. When it was clear that the virus was not letting up, she and my mom drove up to my apartment in the early hours of the morning. (I’ve said it before and I’ll say it again: my family is the greatest.) They took turns caring for me for the ten hours I was actively sick, looked after my super confused and anxious dog, and tried to catch some sleep ON THE FLOOR and on my couch. (Seriously, who does that? I can’t say enough how lucky I am.) When I was well enough to be in the car, they brought me to my parents’ house.

For two days, I had the ultimate recovery fake-out. I’d be fine during the day, eat a piece of toast and drink Gatorade, and send an email to my boss saying “should be good for tomorrow!”, only to end up sick that night. Finally, my oncologist’s office offered to get me a spot sometime the next day for an infusion of fluids and anti-nausea medication. They called in an oral anti-nausea medication and an anti-spasm prescription for my stomach cramping. But when I couldn’t even keep that down, my Mom went into “Mama Bear” mode and gently, yet insistently, offered to take me to the ER. We have an agreement: both of us always respect the other’s choices, but there will be times when we can straight up insist on having the final call. I knew I was in no place to make decisions about my care, so she googled which emergency room had the shortest wait, and off we went.

So, that’s how I ended up hooked up to an IV bag with fluids to hydrate me, anti-nausea to ease my belly, and morphine to take the edge off the pain. I finally felt some of the relief I deeply craved, and I remarked to my mom that it was the best choice I’d made in days.

Shortly before I was discharged, I would discover the full truth of that statement. One of the attending nurses on duty walked in and introduced herself. She had read about my medical history and said she had to meet me. Why? She herself had a desmoid tumor. I was floored and blinked twice to make sure this story wasn’t crafted by the morphine I’d been administered. As she worked on my discharge paperwork, she shared with me about her diagnosis, her surgery, and about her life five years later without a recurrence. Having only met one other Desmoid Tumor patient before (hi, Dakota!), this unscheduled and unorchestrated meeting was completely out of left field – and confirmed my belief that the ER was the best choice.

What’s next? Good question. I don’t really know. I’ve got another appointment with my doctor to discuss changing my medication. Since my white blood cell count was good on my latest labwork, it could be that these bouts are not actually stomach viruses, but a side effect of my medication. My oncologist advised me to stay off my medication until we can discuss it in more depth.

For now, I’m happy to be back on the couch with Fixer Upper reruns, water to drink, and slices of banana to snack on when I feel up to it. It’s been a wacky week, but as I’m continually reminded, living with this diagnosis means nothing that ever goes according to plan.

Month: June 2018

To Build (and Re-Build) a Home

An ER Visit and a Chance Meeting