Let Everything That Hath Breath

I noticed a window at church today that I haven’t noticed before.

stained glass window with the words "Let everything that hath breath praise the Lord"
If you can’t read the words, they say “Let everything that hath breath praise the Lord”

Inappropriate as it might seem if you read a little further, I had to bite back a chuckle. “Okay, Lord, here’s the deal even though I don’t think that’s quite how this works — you let me continue to have breath, I’ll continue to praise you,” I semi-seriously prayed.

See, the scans show that I have some small cancerous nodules in my lungs. Although small is good, multiple cancerous nodules in my lungs (both of them) is bad. Really bad. That cancer-related word that begins with “T” bad. Cure is no longer on the table and the focus now will be on quality and length of life. Not a focus you ever think you’ll face in your early thirties.

I’ve tried and failed to write this post multiple times. I’ve told a number of people directly. If you’re not one of them, don’t take it as anything personal. It just gets really hard to have that conversation over and over.

I’m scared and trying to have hope. I need prayers/hope/spells/vibes (however you name it, it’s the same thing to me). I’m “not in end of life stage, yet” according to Doctor Fader, so that’s good. So long as I’m alive, I believe that there is a chance for medical progress and the improbable miracle of a cure. Science is amazing and incredible discoveries are being made around the world every day.

I will say, in the line of incredible discoveries, I am frightened by the implications that the current immigration ban has for continued scientific development and medical research in the United States (a lot of doctors and researchers are affected by the ban), but England, Canada, and the rest of the world aren’t scientific slouches. By the way, I’m mostly horrified by the ban because it means that the administration is fear-mongering and acting in a fashion that makes America far less safe and will lead to more refugees dying because our country still hasn’t learned from our mistakes in WWII when we refused Jewish refugees because “America First!” I’m not yet 100% selfish.

Back to me, because I am somewhat selfish, I don’t have a real timeline yet. I pressed hard on whether I’d get to see my beloved two-year-old nephew graduate high school and was told that wasn’t likely at this time. As one person described it, any idea of a cure is as improbable as winning the lottery. However, I’m not giving up hope.

You might think that my hope for a cure is denial. I argue that it’s the only logical thought for a stubborn lady who grew up seeing 9th inning rallies bring a city screaming to its feet, and who is still Catholic enough to believe in miracles and the power of prayer. I know that somewhere out there in the world exists a cure for my sarcomas. It might be in clinical trials, it might not even have been discovered yet, but it’s not an impossibility. I refuse to accept death so easily. My faith tells me that despite how willfully ignorant humans can be, and how much the current administration in the United States is trying to fight science, collaboration, and access to medical care, there are good, brilliant people who will fight that and even more brilliant people who are constantly searching for ways to heal people.

I believe that my responsibility is two-fold. First, I need to fight the administration so as to make it possible for researchers to collaborate and make scientific breakthroughs, plus make it possible for me (and others, again I’m not 100% selfish) to continue to access and pay for the medical care I’ll need as I move forward. The second part, is that I need to do all I can to stay alive long enough for that cure to be found.

To that end, I’m working on building up my lung capacity and getting improving my physical health as much as I can before I start treatment. I’ve asked a friend who teaches singing to teach me breathing exercises to help me breathe as efficiently as possible. I’ve started weekly acupuncture aimed at supporting my immune system and lung function. I’m trying to eat healthier. And, perhaps the hardest of all, I’m asking for help — with the healthy eating, with forcing me to walk, with making sure Jarrod gets breaks to take care of himself, etc. If you’re able to help, please make sure my sister has your email address. She’s being a total badass rockstar and organizing things because I’m overwhelmed by that right now.

I meet with a new specialist on Monday who will know about clinical trials and possible treatment plans for me. Jarrod and my amazing brother-in-law will be with me. Likely, I’ll have some form of chemo followed by a break to recover, then chemo, then a break, etc, etc.

Hopefully I’ll still get to attend my cousin’s wedding in October. Hopefully Jarrod and I will be able to visit the Holy Lands before I feel too weak. Hopefully I can balance everything. I’m hoping to keep working as long as I can for a number of reasons. There’s the practical one of my health insurance benefits and I kind of need those, plus income is useful. However, I also like to be of use to the world. I do think that both my day job and my side job contribute to the good in the world.

People learning how to donate organs or request grants to become nurses leads to more lives being saved. People reading news stories about cats and dogs saving people is a source of hope and my way of lighting a candle in the darkness. That’s how I look at my day job and my freelance writing. I may not be on the front lines of animal welfare, but I do think I’m contributing to the good in the world.

I am scared. I’m incredibly afraid. I’m afraid of how painful chemo will be, how grueling the regimen might be, how tired I’ll get, whether I’ll be able to do all the things I want before I get too weak, whether I’ll be a burden to my friends and family in my desperate desire to stay alive. Most of all, I’m afraid of giving up. I’m afraid that I won’t be as strong as I want to be and that I’ll give up. I’m afraid that I won’t be able to force myself to go for walks and attempt to exercise and that’ll lead to my lungs giving out.

Doctor Fader said that the good news is that I’m young, I’m strong (I’m trying to believe her on that), and I have one of the best support systems she’s ever seen (which I know is absolutely 100% true). I need the people who love me to help me stay stubborn and strong, to have willpower for me when I don’t, and especially to simply be there for us and share this heavy burden.

I believe in a God who literally took on the form of a human being and walked among His people, curing the sick, and even raising the dead. I believe in the miraculous and the scientific. Plus, I’m from Cleveland. That means that I know that no matter what the odds say, it ain’t over ’til it’s over. I’m still alive and that means I have a fighting chance, regardless of what the odds say. I’ll just need a lot of help making sure I keep fighting for that chance.

Goodbye to a Good Hug

It’s NYE morning, my husband is making me waffles, and Toby is playing with his Christmas toys. Only 6 days left in the Christmas season.

Maybe next year we’ll return to hosting a party or going out to one. Instead, as much as I want to say good riddance to the dumpster fire of 2016, I’m also keenly aware that it’s saying goodbye to the last year where Dad laughed and talked with us. I want to say goodbye to the year where he died of a sudden heart attack, but that’s also saying goodbye to the year where he gave me his last hug.

I woke up early for that final hug. Opening Day had been pushed back due to weather so we’d gone out for a meal instead of to the game. I had no vacation days and Jarrod had traded enough on his boss’s kindness by that point so we weren’t staying for the new Opening Day.

Dad was fine with it and assured us there would be other Opening Days, he was just happy we had come. He was going to go to the office early to get some work done before he went to the game. Our tickets wouldn’t go to waste — he had friends.

I asked the night before how early was early. He told me and I said I’d get up to say goodbye. He said he’d understand if I slept through it, that was an early time for me.

I set my alarm and dragged myself out of bed and downstairs where he was in his suit, without the jacket, eating breakfast.

He seemed genuinely surprised and happy I’d gotten up to say goodbye. We hugged before he went to work and that was my last dad hug.

I didn’t know then that it was special. I just knew it was a chance to share a good hug before my dad and I went back to being 6+ hours apart from each other. I didn’t know he would die about a month later.

I don’t know how to close the book on 2016 because that means closing the book on that last hug, the last time Dad held my nephew/his grandson, the last time Dad told me he was proud of me for standing up for others Dad holding baby Mand what he considered bravery (what others considered stubbornness or an inability to just be quiet).

I know it’s just time and time rolls on, regardless of what we label the day or the year.

I still don’t know how to say goodbye to the horrible year with so many good last times.

So This Is Christmas

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

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

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

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

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

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

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

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

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

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

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

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

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.

How Can I Look Towards Christmas?

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

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

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

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

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

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

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

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

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

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

clementine

Sorry about that, got distracted for a minute.

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

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

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

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

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

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

I’m So Tired

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

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

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

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

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

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

I Think He’d Have Been Proud

bethany and her dad in front of a beach

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

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

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

bethany and her dad in front of a beach

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

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

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

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

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

gray cat behind a laptop

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

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

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

I hope it does some good.

Sometimes I Live In an Egyptian River

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

View of ruins across the Nile

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

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

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

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

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

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

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

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

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

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.