How Can I Look Towards Christmas?

November 29, 2016November 29, 2016 ~ Bethany ~ 1 Comment

TW: Christianity, Swearing

Starting Advent, looking toward Christmas, is hard for many people this year. It’s easy to feel like our world is broken. It would be easy to just say “Fuck this shit!” I don’t blame anyone who does. There have been moments that I’ve said that with full passion and conviction when I just can’t find the strength to keep hoping and working and trying.

Whether on the personal or the global level, it’s easy to see pain and wonder how that could possibly connect with singing “Joy to the World” or “Silent Night.” How can we watch Rudolph, listen to Christmas music, or put up lights when our hearts hurt?

XMas Lights on black background from Flickr via Wylio — LadyDragonflyCC, Flickr | CC-BY | via Wylio

For me the pain is layers of personal and societal. I hurt for missing my dad. I desperately miss him. I miss knowing that Christmas will come with his jokes about the real tree vs a fake tree, his enjoyment of my husband’s signature Christmas Eve margaritas, his voice singing Christmas songs as Christmas Eve mass, throwing wrapping paper at him as we open presents, the good natured ribbing as he and my mom try to remember which wrapped gifts are for which recipient, the Star Trek books he’d give me that I’d share with him after reading so that we could talk about the characters we still loved more than a decade after they went off the air, the looks of love shared between him and my mom as they exchange their Christmas presents — both clearly delighting in having found gifts that brought joy to their beloved. I can’t think for more than a minute or two before I start crying. It’s hard to focus on the joy of those memories, of the joy of Dad’s clear faith and belief, of the joy of my imperfect family sharing love and laughter and our traditions of burritos, oplatek, cheese plates, and Mannheim Steamroller.

I hurt for wanting to hope for my own health. I won’t know for six months and I know that worrying does no good, but it’s a struggle to not focus on that. It’s a worthy struggle to find my inner optimist and have faith that everything, no matter what the six month scan shows, will be alright in the end — even if it’s alright in a way I cannot possibly imagine.

I hurt for friends dealing with personal difficulties and stresses related to divorce, jobs, children, and more. They’re not my stories, but I hate that people I love are in pain.

I hurt for the world and for my country. I hurt for the individuals so ashamed of their vote that they act as cowards and stick their heads in the sand, refusing to take any action to help the people already being harmed and harassed because of the vote they chose to make in determined ignorance of the facts that were plain to see. I hurt for my friends who are any sort of not heteronormative straight white people. I fear that my friends who are witnessing harassment will be harassed or harmed themselves. I fear that friends who are public school teachers will witness the destruction of public schools in the United States by people who have no understanding of the need for public education. I see pain and hate in the world and it’s easy to question how that connects with Christmas stockings and trees covered in lights and ornaments.

But, those stocking and trees are just part of Christmas. Christmas is also about three magi bringing gifts fit for royalty to a poor family huddled in a stable outside an inn in a major city of an occupied country. Christmas is also about God asking for faith that things will turn out okay in a way no one really imagined.

Christmas is also about hope coming not in the form of one who was powerful, but in the form of a squalling baby born to a Jewish family seeking shelter and care while travelling against their will, living under the rule of a powerful occupying country. It would have been easy to look at the young pregnant woman and her husband, huddled in the straw, and say that their lives would be hopeless. It would have been easy for Mary or Joseph to give up their faith. Maybe for a few minutes between Mary’s saddle sores or Joseph’s blistered feet, as they were unable to find an actual room, as they prepared for Mary to give birth without any help in the straw, surrounded by animals, maybe they did find their faith dimming. If so, that’s okay. They still came together for the birth of a baby who would change the world and bring hope to the hopeless. They welcomed shepherds and foreign wise men. They found hope in a situation many of us would have called hopeless.

I’m not saying that makes everything okay, or means I’ll be able to jump both feet into Christmas this year, but it’s what I’ll keep coming back to. Christmas is about hope coming from what can seem like hopeless circumstances.

“So you also must be ready, because the Son of Man will come at an hour when you do not expect him.” — Matthew 24:44

Maybe that also means that hope can be found when we least expect it. That’s something my dad would have gotten behind. He always said that there was something good around the corner, just often enough to keep him believing. I’m going to choose to try to be hopeful, even when it’s hard.

–Inspired by #FuckThisShit/#RendTheHeavens Advent Devotional Calendar by @crazypastor and @tvrasche, though admittedly a few days late. The passage from November 27 is one that has been rattling in my head ever since I discovered this as a way into Advent that my tired heart not only could handle, but seems to have needed.

Almost There, Sort of

November 22, 2016November 22, 2016 ~ Bethany ~ 4 Comments

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.

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

November 13, 2016November 14, 2016 ~ Bethany ~ 2 Comments

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

October 12, 2016October 12, 2016 ~ Bethany ~ 8 Comments

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.”

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.

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

October 10, 2016October 10, 2016 ~ Bethany ~ 2 Comments

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.

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.

There’s So Much Light

September 14, 2016September 14, 2016 ~ Bethany ~ 3 Comments

A sunburst in a blue sky — The day I took this, everything felt glorious and full of possibility and hope.

It’s been a difficult week, the kind where a beautiful blue sky with a shining sun might not seem appropriate. The biggest reason at the moment actually isn’t my cancer or recovery (apparently my recovery is going well, I’m improving right on schedule), but my cat. He’s got multiple stones in his bladder causing him a lot of discomfort and pain. It should be fixable, but it’s stressful. No one likes seeing someone they love in pain.

Anyway, it’s been a super stressful week even though it’s only Wednesday. I could complain. Admittedly, I have complained to friends. I’ve also cried. I’ll probably cry again and complain again before the end of this week. I’m okay with that. Right now though, I’m not going to complain. Right now, I’m going to look at good things.

See, there’s a lot of darkness in the world. Whether it’s natural disasters, disasters caused by incompetence or worse, people being petty, sickness, death, and just the everyday problems of life, in my eyes it can all combine to make things seem dark and bleak.

However, there’s a lot of good in the world, too. Sometimes it’s a couple with their first child who still sent a really sweet note and a gift certificate to our preferred grocery store. Sometimes it’s people training their dogs to be therapy dogs, then actively going out so other people can benefit from their dogs. Sometimes it’s a friend who is scared of cats coming over so someone can get our cat’s carrier from the car (I’m not allowed currently). Sometimes it’s an aunt taking time away from a busy conference to visit her niece. Sometimes it’s family members driving from out of state for dinner. Sometimes it’s friends making daily visits to make sure my medical needs are addressed, while also providing hugs. Sometimes it’s as simple as friends listening and providing advice and love.

All that good (along with much more than I could ever write if I wrote the world’s longest blog post) combines to form a bright, shining sun that drives back the darkness of the world. I sincerely consider myself blessed and lucky to witness and experience as much goodness as I do. Yes, parts of my life suck and are difficult and full of darkness. But overall? Overall there is so much kindness that every dark sky is brightened.

Celebrating Despite Cancer

September 7, 2016September 9, 2016 ~ Bethany ~ 3 Comments

Monday was the first wedding anniversary for my husband and me. It was not what we expected a year ago, but it happened.

Last year we talked about how our first anniversary would be free of cancer. We discussed doing a photo shoot to show that we had survived. I clearly remember seeing my dad lean over to help convince my mom that, though we’d love to travel with them, it wasn’t something we wanted to do the weekend of our first anniversary. Despite that, we did expect to get a call from him on the day wishing us a happy anniversary and sharing how proud he was of the love we had for each other, and how pleased he was that I’d found someone who clearly loved and supported me through even (what we thought then were) the worst of times.

Of course, we didn’t get a call from him on our anniversary. I did dream about the night before, but that’s a weak substitute.

He and my mom were madly in love with each other for the entirety of their marriage. As an adult, I could clearly see how lucky and rare it was for me to have such a strong example of devotion and love in my life. Corny as it might sound, there were lessons from their example that influenced me and what I wanted my marriage to be. I knew a good marriage involved daily commitment to each other, love and support from both parties for both parties’ dreams and aspirations, love being shown in everything from doing the dishes to regular date nights, and that communication was key. I know it might sound odd, but facing my first anniversary was strange without one of the two people who most demonstrated to me what a good marriage could be.

However, it turned out to be good. I asked a group of friends for some prayers and vibes to help me with my grief and anger (yes, the return of cancer brings with it a lot of anger) so that even though I’m still in some physical pain (mostly controlled by meds, but still limiting me to walking not even a full block), I could find a way to laugh and still celebrate.

Well, we ended up celebrating by turning my doctor-prescribed walk into an anniversary selfie-shoot, complete with my wedding parasol (though, without any makeup because that just seemed exhausting). The process made us laugh and relax, which was priceless. Looking at the photos to share with friends and family on Facebook, made me reflect on the good of this year. Yes, it’s been an objectively pretty awful year. Between cancer pt 1, losing my dad, and cancer pt 2 — the huge amounts of grief and anger are totally understandable. However, they don’t eliminate the good. They can’t erase the reasons to smile. We have our love and we have the support of so many friends and family. We have our weird senses of humor that make us laugh.

Sometimes this means that the same hour includes crying and laughing (both of which, by the way, are painful AF for an abdomen that was vertically sliced open). It means that if you look closely at the photos, you can see that we’re exhausted and that I recently had tears in my eyes. It always means that we have each other.

And maybe that’s incredibly corny, but on the first anniversary of our wedding and every single other day, there is no one else I want at my side,, helping carrying my grief and anger baggage, as I face the cancerous road ahead.

I’m Alright, But Surgery Wasn’t Super Simple

September 2, 2016September 2, 2016 ~ Bethany ~ 15 Comments

I’m home from the hospital and officially into six weeks of expected recovery from surgery. You might have noticed that’s twice as long as the longest expected recovery that was projected before surgery. There’s a reason for that.

The short story is that surgery wasn’t quite as simple as they had hoped. There’s part of a tumor left behind. I’m again going to have a very rough autumn. Though, good news, unless the plan changes drastically, I won’t have any chemotherapy on my birthday this year! Woohoo!

Okay, maybe that’s not enough details for some friends. So here’s the longer story.

Pre-op medications and preparations meant that I spent the 24 hours before surgery feeling like the proverbial sick dog. At one point I curled up on the couch, as miserable and pouting as a small child with the flu, and Toby surprised me. He daintily jumped onto our cocktail table, then carefully stepped onto the couch and curled up right next to my head, then began to purr. Resting with my hand on his soft, gently moving fur and hearing his rhythmic, soothing purr was the relief I needed. Toby couldn’t take away my reactions to the preparations, but he calmed me down and made it easier for me to rest.

Our friend Quinn came over that evening and helped us pack while distracting me and letting me talk. I cried to her about how much I missed my dad and how scared I was to face cancer without him. Not only did Quinn help me make sure I was ready in a practical sense, but she also helped me deal with my emotions. Plus, because she was helping me, Jarrod was able to have a little bit of time on his own to prepare himself. I might be the one with cancer, but he’s the one taking a lot on his shoulders to do what he can to help me get well again — less than a year after we both did all the cancer stuff before.

The day of surgery, our friend Becca drove us to Baltimore while playing soothing classical music and providing great conversation. We’ve known her for years (she actually played a huge role in our unusual and awesome first date) and she’s one of our favorite people.

At Hopkins, Jarrod distracted me with videos while the phlebotomist tried to get enough blood to do the day-of-surgery type and screen. It took three draws! The first dried up before they had even filled a vial. The second they had to stop after getting three of the four vials because I passed out. The nurses decided to wait a bit before trying the third time. They wanted to let me get my color back. I was grateful that I had saved some of my 16 oz allotment of fluid for water to drink since I took a few gulps to get back my courage to go through another poke. The nurses were kind and talked with me about my nephew (Jarrod played videos of him during each poke to distract me — do not underestimate the fierce love an aunt can have and the reminder that she needs to be strong so she can be part of this amazing child’s life). One nurse asked about my wedding ring because she loved the simple style. We told her about Holly Blue and our handcrafted rings that were exactly what we wanted. Apparently the nurse and her fiance were having trouble finding wedding rings that they liked. I’m hoping that Holly might be right for them.

Thankfully the third stick, when it happened, was successful and I fought off the temptation to pass out. It was decided that instead of walking to the surgical center, that I’d be pushed by Jarrod in a wheelchair — just in case. I felt ridiculous, but it did seem practical compared to the possibility of passing out in the passageways of Hopkins. Our pastor, Amanda, was waiting for us when we came out of the blood draw area so she helped Jarrod push me over to the cancer center where I’d have my surgery.

After paperwork, me accidentally mistaking a random fuzzy keychain for a tribble stuffed animal, and only a bit of Facebook perusing, I was led back to the pre-op area. Back there the nurse taking my information saw how anxious I was while answering questions. I kept apologizing, then asking when Jarrod would be allowed back because he helped keep me calm. Almost a year after our wedding and it still felt strange to say “My husband helps me stay a little calmer” as though it were some old-fashioned script about a little woman who was dependent on her husband, rather than a fiercely independent woman with anxiety issues freaked out about cancer and wanting her calm husband to remind her that she could do this.

We met the various doctors who would be involved with the surgery. My favorite was a young resident who reminded me of one of my best friends. She was sweet and kind with just a touch of awkwardness as though she wasn’t sure whether to make conversation with us or talk strictly about medical things. After she left, I asked my husband if it was weird that I felt calmer because the resident reminded me of my favorite Canadian.

Pastor Amanda was allowed back to anoint me and say a few prayers before I was wheeled back. I was awake when they wheeled me to the operating room and it was strangely reminiscent of my hazy memories of being rushed back to an operating room last year when I had internal bleeding and needed a transfusion after surgery.

My next memories are in post-op. I don’t remember yelling at any nurses this time as I was coming out of the anesthetic. In the past, I haven’t always been the kindest when I’ve been waking up. This time I was amazed when I asked for ice chips (I felt parched) and the nurse actually offered me water! Normally my meanness in the past has stemmed from irrational anger about nurses not letting me soothe my thirst with water or ice.

I have a vague memory of my main surgeon telling me about the surgery and a feeling of confusion and rising panic when he got to one part. However, I was out of it from the meds and in pain so I didn’t really understand what the surgeon said other than that he’d come by tomorrow to explain again in detail. I also remember asking when Jarrod could be brought to me and feeling intense relief as soon as I saw him.

It took a long time to get my post-surgery pain under anything resembling “control” at all. I was crying a bit and even asked Jarrod to ask one of my Facebook groups to send prayers/vibes/thoughts that someone would increase my pain medication. Despite the water, the post-surgery nurse was not my favorite. When I pressed my medication button more often than the system would dispense medication, she seemed to get angry at me and said that she’d be blamed for not having given me clear instructions. I told Jarrod that I rather assumed they’d instead take the extra button hitting to mean (accurately) that my pain was not under control and I could not keep from hitting the button in hopes that just possibly it was time for another dose of medication. Thankfully, not long after Jarrod asked for our friends’ intercessions, the post-surgery pain specialist appeared, talked with me, and immediately began adjusting my doses. I wasn’t in comfort, but I wasn’t in agony.

Our friend Chris brought Jarrod dinner and spent some time with me so Jarrod could take a quick break to eat and freshen up without leaving me completely alone. Chris distracted me with jokes and conversation, even if I barely remember any of what was actually said.

It was only a few hours later that I was moved to my hospital room where I recognized the night nurse, Nurse Abby, as one of the fantastic nurses who had taken care of me last summer. Due to pain meds, I may have been a bit overly emotional when I told her how incredibly happy I was to see her because I knew she would take good care of me. I suppose there are worse things for a nurse than heavily medicated patients crying in relief at the sight of you and telling you that they’re already feeling less anxious simply because you’re present.

The next day I not only saw the view from my hospital room windows (pictured) but I also got to see some of the same residents who had been part of my team last year were also part of my team this year. The continuity encouraged me. The doctors explained what had happened the previous day.

Essentially, when they had maneuvered the laparoscopic equipment into position, they found that the tumor was a lot bigger than expected. Roughly, it was about the size of a clementine and wrapped around an important blood vessel. That meant that the approach needed to immediately change.

The surgeons had to maneuver the equipment out and then cut me open in a more traditional fashion. In fact, it’s so traditional that it’s on the exact same line as my scar from last year. Fun side benefit — I won’t have any additional major scars because of this!

The surgeons were calm and skilled so they were able to remove almost all of the tumor-engorged lymph node. Unfortunately, because it was wrapped around the blood vessel, it wasn’t safe to try to remove all of it. Given that the blood vessel is responsible for one of my legs having blood, I’m rather grateful that they didn’t risk it.

Because some of the cancerous tissue had to be left behind, the surgeons carefully marked the outlines of it with small pieces of metal. The pieces are so small that I shouldn’t set off most metal detectors. That was one of the questions I interrupted the doctors to ask when they explained the surgery to me.

That metal will allow the surgeons to clearly and easily measure the results of any treatments and even possibly target treatments directly at the tissue if that seems the best option. I think that the easy measurement is really cool so long as I don’t think about what it’s measuring!

After inserting the metal and doing a visual check to see if anything else looked to have cancerous growths, the surgeons closed me up and sent me to the post-op recovery area. Instead of being done in 45 to 60 minutes, the surgery took somewhere between 5 and 6 hours.

I stayed in the hospital until Sunday with my friend Karen visiting from New Jersey, plus my brother-in-law and friend Rachel visiting to cheer me up and distract me. Jarrod was again able to stay with me in my room so that even at night, I wasn’t completely alone.

Now I’m recovering at home and having the strange conversations again of “so, I have cancer.” There’s not yet a full treatment plan, but some form of radiation is likely. My oncologist wants to avoid chemo because I had it so recently. She’s already set up an appointment for me to talk with a gynecological radiation specialist so that my team can come up with a plan to help me beat this and get back to health. Nothing will happen until after the six-week recovery period to make sure that my body has a chance to heal from surgery. Right now, all I can do is focus on healing.

I’m nervous about what’s to come and what radiation will mean both in terms of side effects and the practical aspects of juggling treatment with the realities of life.Apparently, it’s likely that radiation will make me even more tired than chemo did based on the types of radiation that are likely and how I reacted to chemo. I’m not eager to feel like I’ve lost another autumn.

In happy news, I did receive reassurance that I’ll be able to attend my friend’s mid-October upstate New York wedding as well as (likely at the end of my recovery, before starting radiation) a full day at the Maryland Renaissance Faire (call me a nerd, but I was sad to miss that last year — it’s fun in and of itself, plus I get to see so many friends when I’m there). I was also assured that it’ll be safe for my cat and nephew to be around me. Apparently I’m unlikely to have the sort of radiation where I become mildly radioactive. For those taking bets, I actually asked about being around my nephew before I asked about anything else.

So that’s where things stand. It’s not great, but it could be a whole lot worse, and it’s not dire. I’m still easily and often tired (why it’s taken so long to write this post). We’re working on figuring out my pain med balance at home since sometimes there are waves of awful pain that take my breath while other times, the meds leave the pain as a dull ache that I can almost ignore if I try hard enough and have distraction at hand. I’m not allowed to lift my cat and I’m not supposed to drive, twist, or bend. On the upside, I have a lot of books to read and color, plus staying up the other night due to pain meant that I’ve watched a lot of television on Amazon Prime and Netflix.

I haven’t walked further than the tables in front of our condo building, but I did get outside for the first time yesterday (pictured). Today my sister came over and helped me down to sit in the beautiful unusually cool afternoon sun while I was feeling up to it.

Overall the situation sucks, but it could be worse, it has a lot of hope, and it doesn’t erase the reasons I have to smile and laugh, even if too much laughter is obscenely painful right now.

One Day To Go

August 23, 2016 ~ Bethany ~ 2 Comments

So after all the various scheduling and rescheduling, my surgery is now set for tomorrow, Wednesday, August 24, and 12:15 eastern time. Prayers, good thoughts, and good intentions are all welcome.

If candles are your thing, I’m a huge fan of lighting prayer candles — the symbolism has always called to me. I’m also a huge fan of the prayer for generosity and the rosary. What can I say? I was raised Catholic with a heavy Jesuit influence. I might be Episcopalianish, but I kept the aspects of Catholicism that spoke to me. I’ll be asking Mary, Mother of Jesus, and Mary Magdalene, best friend of Jesus, to intercede for me. I’ll ask my beloved dad, Michael Meissner, to be with me and to sit with my husband while he waits for me to come out of surgery. I’ll pray that my Confirmation saint, Saint Cecilia, intercede for me, and that Lazarus, Mary, and Martha of the town of Bethany add their prayers to mine that my surgeons’ hands are steady and that the surgery is successful.

Today is 24 hours of a clear liquid diet (yes, alcohol counts as a clear liquid diet, however, I’m not allowed to have any within 24 hours of surgery). I get a bit of a hangry temper when I don’t eat enough, so I’m a bit pre-emptively worried about losing my temper. Hopefully vegetarian broth and vegetarian gelatin keep me full. I guess I can think of it as a holy fast rather than the pain and annoyance of surgery starting a day before I’m even at the hospital.

Thankfully, before today there have been wonderful meals and drinks with my loving husband and friends (see our date-night feast from The Classics).I didn’t get a picture Sunday night, but friends gathered with us at our favorite Mexican restaurant and it lifted my spirits. My friends are like earthly saints in their compassion and kindness. I can do anything with that much love at my side.

Double negative

There is nothing that cannot happen today

August 19, 2016August 20, 2016 ~ Bethany ~ 2 Comments

I have always been an optimist. My baseball team was down in the ninth? Well, we could rally! Didn’t land that job? A better one was surely around the corner. People were unjust? Other people would stand up and fight for justice. The future would always be better.

Lately though, after the past two years, I’ve struggled to keep that optimism. In the past, seeing something like the school planner below would merely elicit a bit of an eye raise at the double negative and whether it was appropriately used for great effect here.

Today — my “mental health” self care day urged on me by my oncologist — today, that was not my reaction when I saw this book at a Barnes and Noble.

Today I looked at that and thought, “Yup, a healthy loved one could suddenly die. You could get a call that your six month scan wasn’t nearly as clear and great as they had said and you need to take more time off work and get another scan. You could learn at a friend’s ordination that your cancer, the kind that’s really rare in young women your age, is back. You could be ignored by a surgical scheduler. You could learn that your dad’s vintage spy novels were accidentally given away. You could get a text that your grandpa is in the hospital needing surgery. You could get two different dates for surgery, requiring moving people and switching plans. You could, after setting everything up and handing off your projects at your day job, get a confusing call that, due to some gorram meeting, your surgery is now (maybe) moved back two days. They’re still not sure.”

What else might happen today? Remember there’s nothing that cannot happen today.

A person could give up today. She could stop trying to find and walk the correct path. She could just give in and give up.

Except, one thing cannot happen today.

I cannot give up today. I might have to sit on the floor of a friend’s shop and cry. And by might, I mean I did. But somehow I’ll go home. I’ll call my doctors yet again. I’ll try to swing at the next damn curve ball. And I will not give up.

Giving up is something that cannot happen today.

I Really Wish It Were Jedi Returning

August 16, 2016August 16, 2016 ~ Bethany ~ 12 Comments

I’ve tried to think of a clever or eloquent way of writing this, but I can’t find one. Bald facts: they think my cancer might be back. There’s a spot, it’s small, less than 2cm square, but growing.

I’m having surgery on Monday back at Hopkins. If they can, they’ll remove it. If they can’t remove it, they’ll place markers around it to help direct radiation. After surgery I’ll talk with experts in sarcomas, clinical trials, and radiation therapy and the tumor board at Hopkins will come up with a plan. They really want to avoid chemotherapy. Recovery from surgery will be between 1.5 and 3 weeks, roughly. I’ll be in the hospital between 1 and 3 or so nights, depending on what they find and can do during surgery.

I’m exhausted, angry, and sad. My office is helping me figure out short term disability again, which is good because I was finally up to 16.1 hours of PTO. I’ll have to go negative for a few days, before short term disability will kick in because I can’t go negative enough days to cover even the short end of recovery without taking unpaid leave.

Last year I had my wedding to look forward to and my strong, amazing dad who always knew the right words to cheer me up, even if it was just leaving me a voicemail telling me that he was glad I’d suggested he watch Supergirl because he was really enjoying it and thought I would, too, once I could stream it.

In good news, my husband, cat (pictured), sister, still-living family, and the few friends I’ve already told have been rock stars. I know from last year that my community and friends are amazing. I know where to get biscuits near Johns Hopkins so I can send Jarrod for them when I’m angry and crabby at the hospital (I wish I could remember where my dad got me a milkshake during chemo). I’m luckier than the folks in Silver Spring who recently lost their homes and belongings to the explosion last week (learn how to donate). And, thanks to my dad, I have boxes and boxes of Star Trek books to read during recovery and any treatment that might be needed afterward. Dad liked both Star Wars and Star Trek, but it was Star Trek novels that he devoured and we shared back and forth.

Let’s see what happens.

Save

It’s Been Rough

August 16, 2016August 16, 2016 ~ Bethany ~ 3 Comments

This was originally going to be a “professional” blog with posts showcasing my skills and the professional stuff about which I am a total geek. Then I got sick.

The sickness turned out to be uterine cancer. I went through surgeries and chemotherapy. I blogged about it at a protected blog because someone was stalking and harassing my husband and me at the time. Eventually, all seemed to be getting better. My hair started to grow back. I started to find my footing again.

Then my beloved, amazing, strong, wonderful dad, Michael Meissner, died from a sudden and unexpected heart attack. My world fell apart again.

I started to cope with my grief and make plans for a delayed honeymoon (my husband and I got married between cycles 1 and 2 of chemo in 2015). I saw Hamilton (amazing!). I thought I’d regain my footing yet again. I decided I would live as much as I could and try to not give into fear.

It’s scary to be open about one’s personal life. There are fears that it’ll make me seem “unprofessional” or “unreliable” to reveal the physical and emotional bullets that have hurtled through my life in the past two years.

If we wanted writers who were 100% free of physical and emotional bulletholes, who had no scars that sometimes pulled and hurt, we’d have robots do our writing. We wouldn’t work with and embrace human beings. Hiding humanity behind a veneer of “professionalism” doesn’t do anyone any good. So I’m combining them. I’m a professional who is damn good at her job and, screw ego, really skilled. I’m also a human being, doing the best that she can and believing that honesty helps everyone.

Screw the stories of cancer patients being kickass warrior women who run Ironman marathons. That’s not what you’ll find in me. I think I have strength and I think I have courage, but it’s the normal kind that does sometimes just curl up with an old stuffed panda and a good novel to escape from reality and feed my creativity.

GIFs Are the New Infographics

October 24, 2014November 4, 2014 ~ Bethany ~ Leave a comment

By now you know you need infographics in your campaigns. You’re comfortable with infographics, so let’s move to the next level!

To really humanize your organization and connect with your audience, you need to do more. You need to include GIFS. GIFS are the new infographics that every cool campaign needs to capture audience attention.

What’s so great about GIFs?

1. They grab attention. Your campaign can’t take off if no one sees it. Also, bonus, once you have their attention, they might be amused enough to share your work.

2. GIFs can make even a serious topic a little more fun. No one wants to receive a lecture. People do want to be entertained. Many serious topics can be made more palatable with a dash of humor.

3. GIFs humanize your organization. Whether you want donations, signatures, or customers you need to connect with people. People like to connect with human beings. That means they’ll be more likely to connect to your brand if it’s obvious that there are human beings who participate in pop culture on the other end. If you’re human, people can feel a real emotional connection with you.

How do I find GIFs?

There are a number of ways to find and make GIFs. You can ask us for help, or you can do some searches. Google image search with the Advanced Settings set to include only animations is a favorite. This works best if you have a particular show in mind. Tumblr is also a fantastic place to find GIFs. Some would even say it’s their natural habitat.

How do I make GIFs?

If you have Photoshop, you can use that for really great gifs. If you don’t though (and we know many organizations that don’t, it’s okay), you can still make GIFs. There are many free gif makers out there. One that works pretty well and won’t be NSFW is imgflip. Just go to the tool, upload the video or link to it from YouTube (you can also upload photos to make a GIF, but a lot of people find that too complicated), and then follow the steps. Make sure to choose a text color that stands out on the image so it’s easy for people to read without having to read lips.

What are the legal issues?

Generally GIFs are considered “fair use” that don’t compete with or draw money from a show. However, don’t do a GIF of the World Cup. As the Washington Post notes, that’ll get FIFA’s attention. As always, talk with your legal department if you have concerns.

I’d love to know some of your favorite uses of GIFs!

I Was Sold To, Without Any Active Selling

September 23, 2014 ~ Bethany ~ 1 Comment

I’ve probably been hearing about coworking since 2011 or so. I have a great setup at home and hate commuting (seriously, the least favorite part of my day when I’m in an office — the Metro is so crowded in the morning, I used to shift my hours just to avoid those crowds). I didn’t really consider myself to be a likely candidate for coworking because of that and a love of yoga pants. I have a fantastic desk in front of my floor-to-ceiling window. I have all the coffee and tea I could want, along with wine for as soon as I finish my work on a long day. Plus I have my cat for when I need a break.

Then a new group, Creative Colony, started up in my neighborhood. They were literally blocks from my home. I first noticed them via Twitter before their space had even opened. I noticed that they were tweeting about my favorite local market (Fenton Street Market) and other cool activities so I started following them. I liked the tone of their Twitter. Because they stressed that happy hours did not require being a member, I went to one and met some fantastic people.

When I started up a Twitter account for my local nonprofit thrift shop, Creative Colony began following and retweeting us. They also helped promote our events. Then they began hosting free Monday morning pre-work lectures that I enjoyed and I saw how people easily buckled down to work after the talks. I started to think about giving their discount day pass a try. It was $10. If I hated it, I could easily drink enough coffee and tea, or print enough, to make the money worthwhile. I was hooked after that first day. I somehow finished more work that one day than in two normal days. My boyfriend actually had to text me in the evening to ask when I was coming home because I got into such a good work groove.

Then they did a free coworking week with no pressure to purchase, other than an extra discount if you bought a membership that week.

I’m sure you can guess, I ended up buying a membership. Although what I’m getting for the membership fee is awesome, that wasn’t what brought me in the door, built up my loyalty, and even pushed me over the edge. That was done through social media and community involvement. By focusing not on selling, but on providing value and building up our community, they got me in the door. By then focusing even further on connecting people within the community and providing value for free, they earned my loyalty. Without getting me in the door and earning my loyalty, I liekly wouldn’t have considered a membership, let alone taken the plunge on one.

I got a lite membership (5 days a week) so even if I end up in a full-time, on-site gig somewhere I could still use the space on the weekends or let my boyfriend use the space for his branding work. I’m also still interacting with them on Twitter, thanking them for supporting my volunteer gig, and encouraging friends to go to their Monday morning workshops.

If you want to learn more about selling by focusing on giving away value for free, I highly suggest Mark Schaefer’s book Social Media Explained . I snagged a free copy at an awesome Vocus event where he spoke in the spring, but it’s easily worth the roughly $8.50. Reading it always reminds me of why I love social media and modern marketing. I’m not sure I’d have enjoyed marketing and advertising in the Man Men era of sell, sell, sell, but I love it now when brands see great results by focusing on giving away value and actually helping people, rather than only selling to them. That’s a marketing world where I want to be.

My Three Favorite Ways to Create Visuals for Free

Tan teddy bear in hipster glasses staring at a laptop.

August 31, 2014 ~ Bethany ~ Leave a comment

When I left a corporate position where someone else paid for great, fancy software I found that I needed to find some new tools. I no longer had access to tons of stock photos and Photoshop to help me make badass images. Thankfully, some sleuthing, googling, and (always my favorite) asking of friends led me to a happy place where maybe I can’t do everything that I used to, but I can do a heck of a lot.

Hubspot

I have to admit that I’m a bit of a fangirl for Hubspot. They provide various services to paying clients, but as someone marketing on the cheap I absolutely adore all the resources they provide for free to everyone. They provide advice through whitepapers and webinars, as well as a ton of tools. There are free stock photos, templates, and more. Go poke around and you’ll almost certainly find something useful. (Yes, that photo to the side is definitely a free Hubspot Stock Photo — who doesn’t love a bear on a headset, even if it’s not the most applicable?)

PicMonkey

There is a paid version of PicMonkey, but to be honest, there’s so much in the free tool that I’ve never felt the need to buy the full version. PicMonkey is incredibly intuitive with various filters, edits, and even cute overlays and frames for your images. I used the collage tool to make the Facebook banner below right before Easter to showcase a nonprofit thrift shop’s character and variety of merchandise.

Trying to put this together elsewhere would have involved a lot of futzing with sizes and placements, but with PicMonkey it was less than 15 minutes — and most of that time was spent choosing which photos would work best for our goals!

Photoshop Express

Finally, sometimes you just want the free version of Photoshop. Photoshop Express makes me gleeful until I have a proper “real” version of Photoshop again. I love the browser version for its simplicity and ease of use. Just look at that interface with those perfectly useful buttons. How can it make you not want to sigh with gratitude?

This isn’t an exhaustive list (Inforgraphics mean I turn to other tools), but they are my solid standbys, my true favorites. What are yours?

Bethany Meissner

Living with Cancer in the Internet Age