Hope Isn’t Easy

The usual TW of discussion of my religious beliefs as well as some profanity. Also this is a really long post. No apologies for that, consider yourself warned.

“Clusterfuck” That’s the word for today’s reading in the #FuckThisShit devotional calendar. I saw that, and before I even opened my Bible, I found myself laughing and shaking my head. Because yes, that is the word for how my life and how this world, this country feels right now. It feels like everything is in a giant clusterfuck.

On the corresponding, not so NSFW, #RendTheHeavens calendar it was “Roll(Out)” which just made me think of Transformers. My husband had great memories of the show while I had never even seen a single episode of the show. So, early in our dating, I bought the DVDs and we watched the original show together.

Thinking about Transformers reminds me of optimism. The Autobots were always able to save the day with (other than in the movie) no deaths (because, well, kids’ show). It also reminds me how simple life was back in that studio apartment where we watched the episodes together. We didn’t think about life-changing illnesses or sudden heart attacks.

It’s not like life was 100% perfect. We dealt with job loss and the search for a parish home. But, there wasn’t anything big that challenged my optimism. I remember while I was between jobs, after receiving another “we really liked you, but that one other final candidate had just a bit more experience” email, I decided to call my dad.

I was frustrated and worried I was letting him down. However, Dad assured me that I wasn’t letting him down. Actually, he was proud of me. He liked that I was reaching for my dream of making a difference. He was also certain things would work out. He was right, of course. Within a few months of that call I was working for my dream organization with one of the best bosses I have ever had.

For most of my life I have proudly identified as an optimist. Until mid May 2016, any time I felt that optimism wavering, I could (and generally did) call Dad. I wasn’t naive and I didn’t think things would always be perfect, but I never had much trouble finding hope. When I did struggle, Dad would have the words to help me.  I had my crabby moods and frustrations, but also hope and faith that things would work out — that hard work would pay off, that I could change the world because the world was always getting better even if it needed a push, that I could get through anything.

Part of why I was proud to be an optimist, was because it was something I shared with Dad.

Then I lost my dad to a sudden, unexpected heart attack. Then I learned my cancer was back. Then the tumor turned out to be much bigger than expected. Then my beloved cat got so sick he needed surgery followed by an emergency blood transfusion and a stay at an intensive care facility. Oh, then there was my radiation treatments. Plus shitty things happening in my friends’ lives.

Plus there was everything going on in our country and in the world. The massacre at Pulse; anti-immigrant and anti-refugee talk; bombings causing people to need to flee their homes; a candidate for president treating sexual harassment and assault as no big deal and people I’d previously respected claiming “that’s just locker room talk” (no, it isn’t); overt racism; people saying crap like “blue lives matter” while acting offended by the idea that black lives matter; somehow the most overtly racist, in-bed-with-a-foreign-power, neo-Nazi-enabling, anti-feminist, completely unethical fraudster of a candidate won the Electoral College (with Russia’s help); the whole of the GOP rolling over, including saying that it doesn’t matter if the president elect tweets falsehoods; acts of vandalism and violence from the fraudster’s supporters; the continuing destruction of Aleppo; the daily desecration of this country’s Constitution; and so much more.
image of a deep well with a branch across the topMy optimism isn’t so easy to find in the clusterfuck that life seems to currently be. At times it feels like my faith and hope that things can improve, let alone that they will improve is barely present. My hope seems like a cheap and dying flashlight at the bottom of a deep, dark well. I worry that maybe I’m not an optimist anymore, and that sucks.

At a time when I most need to have my dad with me, the aspect of him I most identified with feels like it might be gone. I’m not as generous as my dad was. I’m certainly not as calm and logical. There’s a lot about him that I don’t share, or at least don’t share now, and am not sure I’ll share again. That’s scares me.

But I do share his faith. Dad always said he suspected God was either laughing or crying (or both) at the divisions we humans make. So to Dad, the fact that his parish was Roman Catholic and mine is Episcopalian really doesn’t matter. It’s the same faith at heart.

While talking with my husband last evening, he suggested that my faith and wanting to be an optimist, are optimistic in nature. The fact that I haven’t given into total despair, that I’m not certain things will always be the darkest timeline — that’s hope and hope is a form of optimism.

And I do have hope. It’s dim, but it’s there. I hope that things will get better. I still think it’s worthwhile to fight for equality regardless of gender, race, creed, or sexual orientation; to speak out for animals; to care and not retreat into my own bubble. I think it’s worthwhile partially because I couldn’t live with myself if I ignored injustice. However, I also think it’s worthwhile because I think the fights can be won. It won’t be easy and we’ll suffer defeats. We won’t immediately stop the violence and mistreatment. But we can and will prevail, so long as we don’t stay in despair.

So what’s today’s verse? Revelations 22: 18-19

I warn everyone who hears the prophetic words in this book: if anyone adds to them, God will add to him the plagues described in this book, and if anyone takes away from the words in this prophetic book, God will take away his share in the tree of life and in the holy city described in this book.”

I don’t have an easy interpretation. It’s the type of verse that makes me hesitate and even worry a little. Is it adding to the words to write about them? To understand them only in English? Is it taking away from the words that it’s been a long, long time since I tried to read the entirety of the Book of Revelations? I don’t know and that leaves me with some fear.

Underneath that fear? There’s hope that this someone comes back to the core faith that God so loves this world, and that somehow there are better days ahead. Somehow I have hope that the world can be healed.

In the words of a Jesuit from Xavier: “Hope is not answers or solutions, it’s faith that something is waiting for us, that there are possibilities. Hope isn’t easy.”

Nothing worthwhile ever was easy.

What Sort of Person

TW: Swearing, Christianity, Progressive Politics

After reading the Medium piece by Jessica Vazquez Torres on today’s #FuckThisShit/#RendTheHeavens, I was torn. I had two competing, though complementary, responses to the daily prompt. One was simply a response directly to the prompt. That’s what’s in this post. The other was a response to the prompt in light of what JVT’s piece brought up for me. Because I couldn’t decide which to write, but knew they were separate enough to not belong in one essay, I’m writing two essays to one day’s prompt. Given that I’m not writing daily, I’m okay with that. Today’s daily prompt was “(DIS)COMFORT: 2 Peter 3: 11-13:

Since everything is to be dissolved in this way, what sort of person ought [you] to be, conducting yourselves in holiness and devotion, waiting for and hastening the coming of the day of God, because of which the heavens will be dissolved in flames and the elements melted by fire. But according to his promise we await new heavens and a new earth in which righteousness dwells.

Instead of using Google to pull up the passage, I felt pulled to get up from the couch and grab my old New American Bible I received 17 years ago (August 27, 1999 to be percise). I received it in my freshman year theology class at my Catholic high school. I forget the official name of the fall semester class, but I remember the teacher telling my class that we should question our faith and question what we believe, because unquestioned faith was untested faith, and testing would make our faith stronger. She actively encouraged our questions, and discouraged feeling any guilt about questioning our faith. That encouragement has stayed with me, even if I no longer can tell you details about the lives of all the prophets we discussed in that class.

I’ve changed a lot in those 17 years. A lot of that is because of times when I’ve pushed myself to embrace discomfort. Two of my favorite people in college were (and still are) nothing like me on the surface. I remember one, Casey, commenting my senior (her junior) year that she was sometimes amazed that we were friends. She and I had different personal views on dating, religion, sex, post-college goals, political activism, and reproductive justice. She wore dark eye makeup under a huge hat with long hair and often gestured with a cigarette. She didn’t gesture with the cigarette if we were indoors, I had a cold, or there wasn’t a stiff breeze taking the smoke away from me. See, I was an asthmatic who hated cigarettes. My general style was somewhat preppy with the occaisonal peasant top or loose skirt while her style was dark bohemian. We were not at all the sort of people you’d think either of us would be comfortable around, but we made each other better people. Or at least, I know she made me a better person precisely because of what about her could be discomforting to my 21 year old self.

More recently, there’s a theatre that my husband and I love, Forum Theatre. They’ve won awards and they have intense, amazing shows. I rarely watch sad television or depressing documentaries. I don’t like books that are devoid of hope. I don’t enjoy absurdist or abstract films. I get that all sounds anti-intellectual, but it’s who I am.

The shows at Forum looked like they would discomfort me and challenge me. I was intrigued but it took effort for me to embrace the likelihood of discomfort and challenge, and realize that I needed that in order to grow and be a better person. Again, I’m so glad that I embraced that discomfort.

two programs for Forum shows
Programs from Forum Theatre

Forum shows do always discomfort me, at least a bit. They challenge me and make me ask questions and look at societal issues in a different way. Some of them I saw multiple times because I want to catch new nuances and see what new ideas they bring up. They’ve pushed me out of my comfort zone and into the experiences of other people, people who initially can seem so different from me and whose actions can otherwise seem so inexplicable. Thinking about Pluto, which deals with a shooting at a community college, still makes me uncomfortable because it showed me how to identify with someone I’d more comfortably consider a monster.

So what does all that have to do with 2 Peter 3: 11-13? Because it’s part of the sort of person I want to be, the sort of person I think I’m called to be. I don’t think that any of us are called to be totally comfortable all the time. I think that we grow by pushing ourselves outside of our comfort zone. Whether it’s friendships or theatre, or something else, we cannot live in comfortable, homogenous bubbles if we want to really know the world that God created and that I believe, as a Christian, I have a responsibility to help change into an “earth in which righeousness dwells.”

Discomfort is not always easy. I have anxiety for which I take medication. It would probably be easier to only do things that are comfortable, but that’s not what I’m called to do. Sometimes it takes deep breathing or medication, but I’m not going to let fear of discomfort keep me from being the sort of person I think I’m meant to be. I’m going to do my best to embrace discomfort so that I can become the Christian I think I’m supposed to be.

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.

There’s So Much Light

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

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.

Three images of Bethany and Jarrod laughing and being cute

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

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.

View from Johns Hopkins Hospital room of modern buildings and a setting sunThe 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.

a view of Silver Spring in the eveningI 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

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.

photo of food at The Classics 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

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.

There is nothing that cannot happen today

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

gray cat looking at the calendar

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 gray cat looking at the calendarfriends 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.

 

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It’s Been Rough

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.