So This Is Christmas

“Uh, Bethany,” you may be thinking, “you’re posting this on Boxing Day, not Christmas Day.” Well, it’s still the Christmas season, so it’s still Christmas.

We tend to gloss over it, but Christmas is actually more than one day. That old song, “The 12 Days of Christmas” is a reference most of us who celebrate even secular Christmas know. Those of us who celebrate religious Christmas likely have the “season of Christmas” referenced in our liturgical calendar.

I’ve always been a fan of the season rather than just the day of Christmas, and this year it’s particularly helpful. All month I could feel myself getting more and more stressed and angry as we approached Christmas. It felt so wrong to have a Christmas without Dad. I know that most Christmas-celebrating people eventually experience one without their dad. Ever since I was diagnosed and told to not look at 5 year survival rates (my tumor make up was weird, I’m a really weird age for my type of cancer, etc), in the back of my head I’d just assumed that Dad would outlive me and I’d never have a Christmas without him.

And now, I’m one day into my first Christmas season without my dad.

Wooden cat ornament, wooden carved creche, ornament with a picture of a grey cat.

My mom is in town for the holiday and her birthday which is really good. We went to a Blue Christmas service at my parish which helped. It didn’t take away the pain and grief, but it helped to be with others who were sharing in worship and grieving their own losses. In the service, we named our feelings and their bittersweet nature, and hung ornaments that symbolized our losses. Being in community and taking the time to acknowledge our grief helped. I suspect I’ll go again next year, since I expect next year will also be difficult. Though, I do hope it’s a little bit less difficult at least.

I’ve felt sharp spurts of anger every time I see or hear anything like “It’s the most wonderful time of the year!” or “it’s the season for joy!” For me, it’s not. It’s a hard time of year and I haven’t felt especially joyful. The worst are signs like “Be Joyful!” because the angry, spiteful part of me looks at that and says “Nope. Not going to happen.”

Wishes for joy or peace, those don’t bother me and seem kinder. Yes, let’s wish for joy together. Let’s hope that we have peace in the world and in our hearts. It’s not that I don’t want to be joyful, more that I can’t stand a command performance of joy.

So was there joy yesterday? Yes, there were moments of joy. I also felt ill which might have been rich Christmas Eve food combined with All the Feels (my emotions often express themselves physically to me). There was definitely sadness, but there was joy. Seeing my nephew’s face light up when he saw the Corduroy bear peeking out of a gift bag from his parents and hearing him yell in his toddler accent “CORDUROY! CORDUROY!!!” — that was a moment of joy. Snuggling with him while we read Corduroy and My Name Is Bob was lovely. Talking with friends was joyful. Exchanging gifts with my family and seeing that we’d picked well was joyful, if bittersweet at times.

Today we’re meeting for lunch and going to ZooLights in the evening. It’s still bittersweet and hard. I’ve already sobbed once this morning (not fun when you already have a massive sinus headache). However, this is Christmas.

There’s a lot I’m still reflecting on from #FuckThisShit and #RendTheHeavens, but a big one is that the first Christmas was messy and a mix of pain and joy. Mary gave birth in a smelly, dirty stable. It was cold and she had strangers coming in while she was probably still dealing with afterbirth. Christmas isn’t just the singing choirs of angels, it’s the family being turned away at every inn. It’s dealing with fear and holding things in one’s heart. It leads to wise strangers warning that family that their infant’s life is in danger so that they must flee to a strange land.

Christmas is messy and a mix of emotions. I think that’s okay.

Almost There, Sort of

Tomorrow, Wednesday, November 23 is my last radiation session!

I went back and forth over what punctuation to use, an exclamation mark or a period. See, it’s the end of radiation for now, but we won’t know for about six months if it actually worked. If it didn’t, well, I’m not sure what comes next.

Also, the end of radiation isn’t the end of cancer treatment. It’s awesome that it’s the end of driving to and from Baltimore every weekday. It’s awesome that my side effects shouldn’t get significantly worse after tomorrow. But, it’s not the end.

I still have a follow up with my main oncologist in mid December. She may or may not request a CT scan at that point in time to see if there is any immediate effect. She will likely have me start my immunotherapy drugs at that point. When those were first described to me, it was one of those science fiction, “we live in the future” sort of moments. Essentially the chemicals in the immunotherapy drugs target certain receptors on the type of cancer cells I have. Once the chemicals have targeted those receptors, they bond to them and essentially make it impossible for the cancer cells to reproduce. So, it’s sort of like dropping an infertility bomb so that any cancer cells in my body are unable to reproduce and form tumors that would kill me.

Of course, they’re still kind of new and cancer treatment is never a 100% sure thing. And they have side effects. There’s a good chance they’ll cause serious pain in my small joints. You know, like the small joints I’m using in my fingers to type this post and do my work.

There’s a plan for that though! See, there are three versions of this drug. We’ll call them Alpha, Beta, and Gamma. A lot of people have the joint pain as a reaction to one of the drugs, but there’s no way to predict which drug will cause the side effect for which patients. The plan is that I’ll start on Alpha (or whichever one is currently cheapest and therefore preferred by my insurance company). I’ll take Alpha for two weeks. Hopefully Alpha won’t cause side effects and I’ll stay on Alpha for six months. However, if Alpha causes “unbearable” side effects that I “cannot tolerate” for two weeks, then I’ll switch to Beta. If Beta causes unbearable problems, I’ll try Gamma. I was assured back in the summer that most patients are compatible (meaning no unbearable side effects) with at least one of the three drugs. So, worst case scenario, I’ll have a month of excruciating small joint pain that will make it nearly impossible for me to type.

However, there’s even more fun! Our for profit health insurance system which I’m sure is celebrating the hell out of the electoral college results, means that a lot of insurance companies will try to fight a patient moving from Alpha to Beta or Gamma because the immediate cost to the insurance company matters more than patients’ quality of life and ability to contribute to society. My oncologist warned me about this. Thankfully, my oncologist and the rest of the Johns Hopkins staff have been completely kickass with my insurance company in the past. So, while it might mean a delay in treatment, I’m confident that my team will prevail in any fight against my insurance company. You do not mess with my oncologist.

In six months, I’ll get a CT scan and have a follow up with my radiation oncologist. That’s because radiation works slowly. There’s a good chance that if they did a CT scan a week from now, it wouldn’t show any change from before I started radiation. That’s…unsettling to put it mildly. With chemo I waited less than a month before my first clean scan.

Of course, one clean scan doesn’t really mean anything. I mean I had a clean one-month scan. Then at six months I had a tumor that turned out to be the size of a clementine. Oh my darling, oh my darling, oh my darling clemtumor.

clementine

Sorry about that, got distracted for a minute.

There’s also that. While I’ve been focused on making it to the end of radiation I haven’t been focused on the holidays and what they’ll be like without my dad. Kind of shitty, as my sister said, and not much we can do about that. But even starting to think about the holidays is like poking a barely stable dam holding back a flood of pain.

So, I finish radiation tomorrow. Then I get to start slowly recovering. Apparently I might not get back to normal energy for six months, I wanted to scream when I was told that. I also barely held it together when, after I asked about reintroducing dairy products to my diet, I was told “well, those aren’t very good for you.” I think my voice was almost steady when, instead of cursing, I said “You don’t understand, queso dip and milkshakes are my comfort food. They’re how I cope with life.” I closed my mouth and didn’t include “which is full of pain and struggle because I’m in the darkest timeline and my dad isn’t here to help me understand or fix things” after “life.” I did think it pretty hard though. The nurse then suggested adding them back slowly.

When I finish radiation, I start recovery and I start having less of a reason to not think about the holidays. Hence not knowing if I should use a period or an exclamation mark on my opening sentence.

Why did I choose the exclamation mark? Because it is something to celebrate. And even in the darkest timeline, it’s important to celebrate the good and joyful events, whether big or small. I won’t know if the radiation worked for six more months. I won’t be immediately back to normal. But that’s the future. I can’t control the future. What I can do is celebrate in the moments and work hard when needed. I can find a way to balance fighting bigotry and finding moments of joy.

Speaking of fighting bigotry (which we all should agree on, btw). Have you called your senators and reps to ask them to denounce Stephen Bannon and Jeff Sessions because bigots and racists should not be in the administration? No matter who you voted for, if you consider yourself my friend I expect that you consider yourself opposed to racism and therefore it is your duty to speak out against bigots and take action. Those links above will help you find the phone numbers. If you need a script, here’s one my friend Annie used:
“Hi, my name is [name] and I’m a constituent in [city]. I’m calling to ask the Representative/Senator to oppose the appointment of Stephen Bannon to Chief Strategist, due to his ties to white supremacist groups. Our country deserves better than to fill our White House staff with people who espouse hate. [I’d also like to ask the Senator to push hard to get President Obama’s Supreme Court nominee confirmed before the new administration takes over.] Will you please pass that along?”

It’s short, simple, and something that we all should agree on regardless of our party affiliations. Look, if the exhausted cancer girl who gets anxious on phone calls can find the spoons to stand up for people, so can you. I’ll also be making calls about the ACA and more since, I kind of like living. I also like my best friend living. I like a lot of people living and being able to access medical care. Living — it’s not just for the rich!

I’m So Tired

Writing is tough when I’m tired. This happened during chemo, too — I got so tired that I didn’t keep up with my writing. Radiation fatigue has been tough. Plus having treatments five days a week eats up about three hours of every day. Roughly 10:30-1:30 if you’re really curious, though it can shift a bit depending on traffic and wait times. I usually nap for about an hour a day, at least once, and while it seems like that would leave a lot of time for writing, I’m just slower at everything. Plus, sometimes I just want to ignore the cancer for a bit and read or watch tv (I’ve binge watched all of Supergirl and Flash, and am now into season 3 of Arrow when I hadn’t watched any of the CW comic book shows before this bout of cancer).

gray cat sleeping on a desk
I’m so tired, I get jealous of my cat’s ability to sleep

At night, I don’t always sleep well. Nightmares aren’t uncommon. I’m not surprised by them. Nightmares during my second bout of cancer in the same number of years and at the end of the same year in which I lost my dad? Not shocking. To some extent, they’re the inevitable result of emotional exhaustion. I don’t mean that in any sort of unhealthy way. As my psychiatrist has said, that sort of exhaustion is only to be expected after the past two years. If you expand it, it makes even more sense. Even though it hasn’t always been as dire as cancer and death, I think it’s been more than five years since my husband and I had a serious multi-month stretch of normalcy (i.e. no family deaths, serious health problems, or major career issues for either of us).

Since Tuesday the nightmares have been about bullies, friends being harmed because of the color of their skin or the gender of the one they love, and our society being overrun by white supremacists. How do I cope with the nightmares and exhaustion? Sometimes, it’s by taking a break, bribing my cat with treats, and watching a feminist kids’ show about how friendship can conquer any problem, no matter how serious. Other times, it’s actively not turning away from the problems and stresses.

By trying to do better in my daily life. By looking forward to when I can actively do more, but figuring out what I can do now. By reaching out to friends. By making sure that my social media and my pocketbook are aligned with my ethical values.

For my latest nightmares, I’m trying to cope by watching one of the last videos of my dad, talking about immigration and strength in diversity. It’s a little under 4 minutes long, but it’s worth watching, even if you never met my dad.

I Think He’d Have Been Proud

bethany and her dad in front of a beach

Last year on my birthday my dad wrote the following in his birthday email to me:

“Mom and I are very proud of you, and very impressed with how well you and Jarrod have integrated yourself into [your] community….It is said that a person’s wealth can be measured by how many friends they have; if so, you and Jarrod have riches galore.

You also have inherited your Mom’s talent (and perhaps some of mine) with the written word….You have had a lot to write about over the last year; not all of is has involved fun times; but your spirit remains indomitable. And I love that about you.”

bethany and her dad in front of a beach

It’s one of the best compliments my dad ever gave me (up there with “you have a good heart”) and something I try to live into. In that spirit, I think that Dad would have been proud that yesterday, A Practical Wedding (APW) published an essay I wrote about the past year. Last year when I posted a comment on an APW happy hour that I was trying to figure out what to do because I might lose all my hair right before my wedding, people were kind. Not only did other commenters provide advice and tips and well wishes, but Maddie (who works at APW) sent links to posts dealing with cancer and weddings and then did even more.

See, APW does a partnership with Pantene Beautiful Lengths where they encourage women to donate hair or money to Pantene Beautiful Lengths so that women undergoing chemo can receive wonderful free wigs. A lot of women grow their hair out for the weddings then get drastic cuts after the wedding. Through this partnership, those cuts can help women. They can help women like me.

Maddie got me in touch with Pantene Beautiful Lengths and I soon had a beautiful wig in a cute style that was pretty much my exact hair color. It was insanely kind. When Maddie emailed me last week to ask if I could share an update because she was prepping a post about the partnership, I think she got a bit more than she bargained for. I was preparing to head to Cleveland for a baseball game and was in a rush so I typed up a quick summary email and attached an essay I’d been playing with in case she could use it to pull any quotes for her post.

She asked if they could edit the essay for length and post it, which felt like a huge compliment. Dad had often complimented my writing and said that it was a meaningful gift for me to share.

Ernest Hemingway said that writing is easy, “All you do is sit down at a typewriter and bleed.” Well, I tend to use a laptop (sometimes an actual paper notebook) but I try to be honest. I guess if I were following Hemingway’s quote, I’d say that I bleed, but then try to organize and clean up the blood so it makes some sense. I also usually have to pet Toby and convince him it’s okay for me to type.

gray cat behind a laptop

I don’t know if my writing will help anyone other than myself. It could just be a selfish act that helps me make sense of the world. But maybe it’s something that can help others in the APW community, the way that I was helped.

If one reader donates hair or money to Pantene Beautiful Lengths because of my essay, or one reader is moved to find and give kindness, then I think I’ll have done something good.

Regardless, in a month where I’m missing my dad like crazy (October was also his birthday month), it feels right that an essay sharing how love and kindness kept me going despite the worst year of my life is published on APW. APW has a wide readership so I hope it inspires another reader to be kind and indomitable, no matter what life brings.

I hope it does some good.

Sometimes I Live In an Egyptian River

Apologies for how long it’s been since my last post. I kept meaning to write a post, but then not being able to find the words. Things were too unclear, so it was easier to just pretend they weren’t happening. Denial can be simpler than getting a grip on reality.

View of ruins across the Nile

One of my college professors, Dr. John Fairfield, introduced me to the idea that unclear writing is indicative of unclear thinking (Want to see his writing? It’s on Amazon). He also introduced me to the idea that the best way to understand something is to force yourself to write about it. As you write you’ll find where you need to learn, research, and think. Writing forces you to take what’s been thrown at you and turn it into something you can handle and hold with confidence.

The advice was given for understanding history, but it applies to more than that. The class was Writing in the Public, after all, and I wrote some great papers there. I’m still proud of my paper laying out how the common understanding of Horatio Alger stories as supporting the idea of pulling oneself up by one’s bootstraps is a misinterpretation of the stories — someday I’ll figure out a way to return to that and do something with it, but I digress.

Digressing is easy to do when I don’t want to face reality. Digressing is a form of denial. If I can think about Horatio Alger, I can avoid thinking about reality. Reality right now is that tomorrow I get three little tattoos on my abdomen to ensure that the radiation is always aimed at the correct spot. The day after, Wednesday, I start radiation.

It’s only six weeks, but it’s five days a week for each of those weeks. This first week is weird because I only get two days of radiation before escaping to visit a dear friend and attend the wedding of two other amazing friends. I’m still unsure if this means that three extra days will be added at the end of the six weeks.

I’ve been warned that I’ll be tired, that I’ll have to avoid spice and dairy (other than yogurt). I’ve been told that my skin will be sensitive and might hurt. I’ve been told that all of the side effects will be cumulative. By this time next week I’ll start noticing the fatigue, by a week after I’ll start noticing digestive issues and need to change my diet. The recommended diet is high protein, low fiber, no dairy other than yogurt, avoid seeds, plant skins, and legumes, reduce my sugar, and drink lots and lots of water.

I’m to eat yogurt every morning. My friend Holly picked up multiple bottles of a kind I actually like that’s only available at the farmers market. I forgot to ask about alcohol, but I’m guessing I’m supposed to reduce that since it’s similar to sugar. As someone who adores cheese and dairy, normally eats legumes to get protein, and likes to eat whole apples, this doesn’t sound like a delicious six weeks. Given how food oriented I am, this has been contributing to my crabbiness.

I also won’t know what time my radiation appointments will be until tomorrow. Given that we’re trying to ask friends for rides so my husband doesn’t have to take too much time off work or I have to choose between driving while fatigued or taking an Uber/Lyft for an hour drive each way, that’s really frustrating. It feels like just another reminder of how little control I have over any of this.

I couldn’t wrap my head around it enough to write. I suspect the writing in this post is still unclear because my thoughts are still unclear. The future is incredibly murky, and I suspect anyone would feel some fear about that. I’m afraid that we won’t know how to ask for the help that we’ll so very much need. I’m afraid of the side effects. I’m afraid of the fatigue, doing what I care about for the next two months, and how long it might take to feel close to normal afterward.

Being afraid or in denial won’t keep the future away. It’ll still come. Hopefully it’ll come with kindness and hidden reservoirs of strength. Hope is not unclear. How that hope might manifest is unknown and thus unclear, but the hope itself that exists alongside those fears, that helps me function despite those fears, and that even sometimes quietly calms those fears — that is not unclear.