Were You Serious About Wanting To Help?

People often say “let me know if there’s anything I can do!” Here’s something all of you can do — fight the AHCA.

What is known about it is that it would lead to 23 million Americans losing their health insurance, there would not be federal protections for people with pre-existing conditions, and there would be no federal prohibitions against insurance companies reinstating annual and lifetime benefit limits. Oh, and the super rich would get a huge tax break.

I ran out my super high deductible within less than 30 days of being on my current insurance. How fast do you think I’d hit annual and lifetime benefit limits? How quickly do you think my husband, Jarrod, would become a young, bankrupt widower?

If you live in a state, call your senators and ask them to vote NO on the AHCA. Call them daily. Even if you think that it would be awesome for me to die so that wealthy people can be wealthier, you should at least oppose the secret, closed-door, super rushed process that’s happening. It’s the opposite of democracy to put together a bill in secret, allow no time for negotiations, have zero public hearings, and rush a vote. Even GOP members are starting to say that’s problematic. So you have no gorram excuse not to call.

Second, whether you live in a state or elsewhere, tell all of your friends in states to call their senators and ask them to vote NO on the AHCA.

This is a moral issue. This is a matter of life and death for millions of people, likely many of you! This is not limited to those not on employer plans. This affects everyone in the US. This deeply and personally affects me and my chances of seeing my nephew start kindergarten. Please make those calls and then ask your friends to do the same.

Not sure who to call?

The United States Senate website has a useful feature in the upper left of the screen where you can look up your senators by state, and it’ll provide not only their DC phone number, but also usually their individual websites which should list their state offices. Call as many of your senators’ offices as you can to make sure that they know you oppose the AHCA. Have problems? Comment below and I’ll look up their numbers for you.

Many of you are in Ohio and Portman is a key vote and has been said to be on the fence, so your call is especially important. His numbers to call are:
Cincinnati: 513-684-3265
Cleveland: 216-522-7095
Columbus: 614-469-6774
Toledo: 419-259-3895
DC: 202-224-3353

Ohio’s other senator is Sherrod Brown, whose numbers are:
Cleveland: 216-522-7272
Cincinnati: 513-684-1021
Columbus: 614-469-2083
Lorain: 440-242-4100
DC: 202-224-2315

Many of you also live in Indiana. Your senators are Todd Young and Joe Donnelly. Todd Young’s contact numbers are:
Indianapolis: 317-226-6700
New Albany: 812-542-4820
DC: 202-224-5623

Donnelly’s numbers are:
Evansville: 812-425-5813
Fort Wayne: 260-420-4955
Hammond: 219-852-0089
Indianapolis: 317-226-5555
Jeffersonville: 812-284-2027
South Bend: 574-288-2780
DC: 202-224-4814

Not sure what to say?

Start with your name and that you’re a constituent. Then say that you are opposed to the AHCA and want your senator to vote NO if it comes up for a vote. Mention that your friend/cousin/daughter-in-law/other needs prohibitions against annual and lifetime limits on what insurance companies will pay for care, as well as protections for people with pre-existing conditions. Otherwise, rather than giving back to her community with her husband, she’ll soon leave behind a bankrupt young widower consumed with grief. Or, if you don’t care about that, simply state that you’re opposed to any vote on a bill affecting so many people without time for public comment and multiple public hearings. Say thank you, and that’s usually it.

If you want a more general script, check out 5calls.org.

Want to learn more?

The Skimm put together a fantastic guide that has timelines, key players, and more to help people understand the current state of healthcare in the US, how we got here, and what’s happening in politics about all this. I highly recommend taking some time to read it.

Please call and please ask your friends to do the same. I know that it can be scary to do so, but isn’t the death of someone about whom you care even scarier?

And, because this is such a serious post, here’s a photo of me meeting one of my idols this past weekend with my husband and two of my best friends. Her name is Felicia Day and she’s amazing, and also tweets her opposition to the AHCA. She was also incredibly kind when I teared up talking about my dad and just seems like one of those rare people with a ton of talent, but also a ton of goodness.

4 people including me standing with Felicia Day in the middle

*Note, this blog post is similar to some of my FB posts over the past few weeks. This issue is deathly important to me so I wanted to combine some of the information and share here with additional details in hopes of convincing as many people as possible to call and fight the AHCA.

Partially Frustrated

Today has been intense. I’m writing this from my chemo daybed at Hopkins and “intense” is simply the best word for it.

A building behind green trees under a blue sky with bright sunlight through clouds
The view from my chemo daybed

I slept poorly again (though better/more than the past several nights at least). While getting ready this morning I struggled with emotions about our country, as well as my own ability to create change, plus my frustration that this is my life now.

We did get to Hopkins on time and were able to see the amazing phlebotomy nurse who somehow accesses my port painlessly. Afterward, while (we thought) my Olaratumab was being prepped, we used the two hours to get a good lunch.

We decided to Lyft to Atwaters and stroll back. I felt absurd taking a car less than a mile, but lunch was delicious and the walk back afterward was exhausting at just over half a mile. I won’t always let myself indulge like I did today, but it made a huge difference in lifting my spirits.

That turned out to be a good thing. After returning and checking in early for my chemo, one of my nurses, Kim, came out to see us. My platelets and white blood cells were low and they likely couldn’t give me my treatment today. I held it together while she made it clear she understood how hard this was and that my oncologist’s PA would be coming up soon to talk with me.

After Kim left I started crying. Not sobbing in the waiting room, thankfully, but sniffling and unable to stop little tear drops dripping onto the mask Kim handed me to keep me safe from other people’s germs. Honestly, all that kept me from embarrassing myself and bawling was reminding myself of the panda masks a friend just sent that made me smile despite my frustration.

I’ve been trying so freaking hard so the possible delay and quarantine on top of being exhausted was too much for me to be stoic, let alone optimistic. This regimen was supposed to be easier. Since Friday I’ve been pushing myself as hard as I can and walking a ton every day, but it still wasn’t enough. My best wasn’t enough.

People talk about not wasting time, but every delay or quarantine feels like I’m missing out on life. I’m not greedy. I don’t want wealth (though, I’ll be honest, being able to afford Lyft and delivery makes cancer easier). When you boil it down, I want what any sane person wants: to spend time with the people and pets I love; to help animals and people; to feel like my choices have some effect on my own life  (even if I know a lot is out of my hands); to live up to my potential and use my privilege for good; and to find moments of joy, silliness, laughter, and delicious food along the way.

Delays and quarantines feel like they deny those to me. I know that literally nothing I do can influence how quickly my blood recovers from chemo. I can support my body and do my best, but ultimately last week involved poison coursing through my veins. That has an effect.

Thankfully, because today’s treatment is just the antibody drug, not the traditional chemo drug, my oncologist decided it was safe for me to receive treatment today. I still need to go for more bloodwork on Monday to see if my levels have improved. I got permission to still see my family thus weekend, but had to promise lots of handwashing and that no one felt ill (plus that I’ll mask up before hugging my nephew). I’m not supposed to go to church and may have to skip a luncheon I’d been excited to attend.

So, it’s not full quarantine but partial, so I guess I’m partially frustrated, but trying to look on the bright side because that’s what I do.

I have an awesome care team that took the time to talk with me, my husband has been a rockstar, my family is willing to shift tomorrow’s dinner so I can still participate, I’ve got some great books to read, and I have incredible friends. Plus, the best part, within a few hours of writing this I’ll be home with my beloved cat 😉

That will have to be enough for now.

Sometimes It’s Good Not to Grow

So, the good news is that I’m not in quarantine anymore, there are no new sarcomas, and my sarcomas are not growing.

The bad news is that the sarcomas haven’t shrunk since the previous scan and there’s no way to induce further shrinkage, so the best we can do now is aim for stable with a good quality of life.

That was not what I was expecting to hear from my oncologist. Also “quality of life” is an oddly terrifying phrase to hear because it somehow drives home the “terminal” aspect of “terminal disease.” Needless to say, there was not any bouncing with glee at the good news this time around. Instead there was serious discussion and decisions regarding my options.

I guess that’s another piece of good news — I have options. Here’s what we chose.

We’re going to be changing my chemo regimen to one that has a better clinical record of maintaining sarcoma stability. That means that I’ll be doing outpatient chemo instead of inpatient, which should at least make our schedule more predictable and be less of a hassle. I’ll get two drugs for 12 weeks, then switch to just one of those drugs after that.

The two drugs will be one that I have been getting and a new one that was just approved by the FDA in December 2016. The new drug is an antibody drug and has very few side effects. The one that I have been getting is the less toxic of the two drugs I had been receiving in my inpatient chemo, but it is the one that causes what I call “burning hand syndrome” where the palms of my hands feel for a day or two like they’re horrifically sunburned and for which the only relief is literally gently placing my hands on an ice pack. I’m lucky that this has only happened to my hands (so far) since for many patients it affects both the palms of their hands and the soles of their feet.

Suffice to say that the scan results are scary and not what I expected or wanted to hear at all. It’s been confirmed that I’ll be starting the new regimen on May 26. So yay for the next step?

As Jarrod says, we’re focusing on stability so that I stay alive long enough for the next amazing scientific breakthrough that actually cures me. Just because it seems impossible now doesn’t mean it won’t be possible next year. Also, I should be able to do a lot of living and I’m doing my best to do that (even if it does still, for now, include being more tired than a healthy person). I want to figure out what normal can look like. It will include us taking at least two weeks for a very delayed honeymoon. Right now we’re looking at January 2018 for that.

I should provide a general warning though that, depending on the day, my humor has taken a bit of a dark turn. It’s not stuff I’m likely to write (since I do edit these posts), but it might come our verbally. Today when I was happy and having a great time, I had to clarify that I meant something as “humorous, not depressing!” Until the words were out of my mouth I hadn’t realized that something that made me giggle inwardly might actually come off as depressing to others. I may be unaware that something comes off as morbid or dark, so please do feel free to say something. So long as you’re not judgmental about it (because, let’s face it, I have the gorram right to be morbid and dark in my humor if that’s what gets me through this), I’d much rather know if something I said came off as depressing rather than funny. I genuinely don’t want to depress people and I will say if I just need to be depressing and down in the dumps. What I ask of my friends and family is that you tell me if a joke doesn’t land or a comment sounds really depressing. Deal?

In the meantime, I’ll keep the “cautious optimism” that my oncologist has, and hold onto my faith that, as my favorite mystic wrote, “all will be well” even though I may have times of fear. I don’t believe that faith means that we have no fear, but that we keep trying to trust even when we’re angry and afraid. Between my faith, my friends, and my family (including my cat) I do believe that Jarrod and I will get through this.

There are still lots of reasons to smile (like getting to play with a friends’ awesome dog).

Bethany petting a beagle mix while sitting on the ground outside

Stepping Through Grief

Monday will be one year from when my dad passed away. Ironically my mom had been visiting my sister and me to attend a walk benefiting the gynecologic cancer research and resources at Hopkins. It was meant to be a celebration of survival for our family in some ways. Instead we lost my dad whose love and kindness had gotten all of us through so much.

If you never got the chance to meet my dad, here’s a video that my brother-in-law found of my dad speaking at a cultural garden dedication:

It’s very stereotypically him in a lot of ways: his humor, compassion for others, obvious love for my mom, and ability to use his own background to speak to the need for caring about others. I know I’m biased as his daughter, but my dad was really wonderful.

While my siblings and I were in Cleveland trying to process and cope in the immediate aftermath of losing our dad, we started dealing with some of the practicalities. One of those, that I’d never really thought of before then, was dealing with magazine subscriptions. One magazine that my dad had been subscribing to for as long as I could remember was Analog: Science Fiction and Fact.

It had science fiction novellas and short stories, sometimes serials that would be published over months, as well as thought-provoking editorials and articles about cool new real things in science. When I was a kid I started paging through my dad’s copies and reading some of the easier stories. Eventually I read all the stories, and after that all the stories plus the factual articles. My dad and I would discuss the stories and articles, even when most adults probably would have assumed I was too young to understand them.

When I went to college my dad would bring his copies to Cincinnati for me to read. Then I’d catch up on the issues and we’d discuss them over the phone or when we were next in the same town. The same thing happened when I moved out to near DC. One month my husband’s high school friend had a story published in Analog. When I told my dad, he was so excited that we knew someone who had been published in Analog and whose story he had enjoyed. I always thought that some day I’d polish one of my short stories enough to submit it and have it published, and I’d surprise my dad. I guess I waited too long.

When my husband moved my dad’s car into the garage in May of last year, he found the normal items my dad always kept in the car, along with the most recent Analog. It looked like my dad had read it and was going to either set aside or mail it to me so I could read it next. Jarrod brought the Analog in and I remember weeping because I’d never get to discuss it with my dad.

Jarrod also was good enough to ask my mom if we could transfer my dad’s Analog subscription to me instead of cancelling it. Jarrod wanted me to have that subscription that had gone back decades and given so many great memories to my relationship with my dad. I’m really glad that he did because there is something about knowing that it’s unbroken.

Both the copy from the car and the copies that started arriving at our home were bittersweet. In one sense they were a continuation of something my dad and I loved and a reminder of something we shared. Trying to open them though, was too hard. I’d start to pick one up and be struck again by the fact that we’d never talk about the stories again.

I asked Jarrod once if it bothered him, that these were coming to our home and I wasn’t reading them, just putting them on the shelf for the future. He assured me that it was okay and he knew there would come a time when I’d be happy they were there and I’d start reading them again. He didn’t mind waiting for that, whenever that might be.

That time turned out to be a few weeks ago, almost a year from when my dad and I last talked. I looked at the newest Analog that had come in the mail and I picked it up. I started reading the editorial. Nor surprisingly I teared up a bit and had to stop a few times. I tried to read the first story, but couldn’t. I let myself cry a bit.

Even with having to stop, even with the crying, it felt like progress of a sort, a small step if you will. One of my brother’s favorite sayings that I also love is an admonition to take the next right step and trust in God. Essentially, I’ve always taken it to mean that we don’t have to try to do everything all at once. It’s enough to take the next right step, whether figurative or sometimes even literal, and trust that things will work themselves out. In the case of grief, it’s not trying to not feel pain all at once, but maybe just letting ourselves take whatever the next step is, and there are a lot of them. The steps that have been healing have included putting Dad’s values into play and speaking out against racism and anti-Muslim prejudice, as well as returning to the restaurant where we ate together as a family on his last trip to Silver Spring. One really big step for me was this one, starting to again read the science fiction and fact magazine we both loved.

I haven’t finished the issue yet, but I’ve read a few more stories in it and I’ve stopped crying after each story. I think that’s progress. Admittedly, tears have been falling down my face as I’ve typed this blog post, but I’m okay with that. I don’t remember Dad ever telling me to hide my emotions. I mostly remember him handing me a clean handkerchief when I was crying.

I count myself incredibly blessed to have had a great relationship with my dad where we could seriously discuss and share in a love of science fiction and general nerdery. My dad introduced me to so many worlds, I kind of hate that I’d only just started to introduce back.

He became a huge fan of Cherie Priest’s Clockwork Century series after I lent him my copy of Boneshaker. Because of how much I loved Doctor Who, and after sitting in on a few Christmas specials that Jarrod and I watched while visiting, Dad caught up on new Who and was looking forward to the next season. We’d discuss the different Doctors and what tied them together. When I told him how much I was looking forward to Supergirl hitting Netflix because everything I heard made it sound awesome, he started watching it. One of my most precious possessions is a voicemail from him on a day where my chemo was making me feel awful and he wanted to cheer me up. In the relatively long voicemail he talks about how he’s really liking Supergirl and that she reminds him of me because of her optimism and hope.

Cancer, even stage IV metastatic sarcomas with super toxic chemo and awful side effects, is nowhere near as hard and as awful as losing my dad. I miss him so much and I still sometimes yell at God about that. Monday I plan to watch Star Trek or Supergirl during the day and in the evening get together with my sister for (mild) Mexican and Cleveland baseball watching.

In the meantime, I’ll read some more science fiction and keep the faith that someday I’ll see him again. I believe that he’s in heaven and, ultimately, I’d like to think he’s proud of how I’m handling the curveballs.

We Made It To Easter

You know what is really hard to do when you have joint pain? Type a blog post. The good news is that this round I did not experience horrific jaw pain. The bad news is that instead of 1 day of joint pain that was managed with 5mg of oxy, I had 3+ days that required 10 and 15 mg of oxy to manage. Still, I will take that over the jaw pain.

I also found out that my white blood cells were super low (like 0.08 when normal white blood cell counts are around 4.50-11). This unfortunately meant that I was advised to skip Easter services. Normally, Jarrod and I try to go to the full Tridium — Holy Thursday, Good Friday, Easter Vigil, and Easter Day (though we skipped Easter Day last year because I wasn’t fully recovered from first chemo). It hurt pretty deep to have to skip something I’d been looking forward to and constantly rechecking with each schedule change to make sure I’d still feel up to attending.

Thankfully our parish came through for us. One of our friends tested out skyping us with his phone set up between two hymn books in the choir loft on Friday, then repeated it on Sunday morning. It was lovely. I cried because it meant so much to me. Then, our friend and pastor, Amanda, came over on Easter after service to bring us Communion. The blood made my poor tongue burn (chemo kills digestive cells, including taste buds, so essentially my tongue is really raw a lot of the time as baby taste buds try to regrow) but it was so fulfilling to have Eucharist on one of the holidays I consider most important.

It hasn’t been an easy round by far, and there’s much more to write soon about kindness and gratitude, plus the perspective gained from being treated on a leukemia ward, but that’ll come another day. For now, I’m improving greatly and I’m not in pain, but I’m still dealing with a lot of chemo fatigue so I get tired and exhausted pretty easily. Walking 2 full laps of our condo building hallway left me shaking and leaning on the wall the other evening, even with multiple pauses to catch my breath.

Also, on a crabby note, having allergies on top of chemo side effects just feels rude, like the universe rubbing salt in my wound. Thankfully those are getting a bit under control. Being exhausted and fatigued, but unable to sleep for coughing (or, my husband’s favorite — me being so exhausted I literally sleep while hacking away like some old school consumption patient), is just not cool of the universe.

However, we’re in Easter. My husband made me a delicious Easter dinner complete with a from-scratch Swiss cake roll. He made me a display of rabbits to call back to a childhood tradition my sister and I shared. I got to see lots of photos of my nephew at my childhood ballpark. And, I got to take part in the Easter worship because the people of my parish are kind and considerate, and went out of their way to include us when it would have been so easy for them to simply say they were busy and unable to help.

I think, even more than stuffed bunnies on a Pope JP-II-blessed Jubilee cloth, that’s the real spirit of Easter.

display of stuffed bunnies

It’s Working

You’d think that, after receiving good news, a person would shout it from the proverbial rooftops. Sometimes though, good news is so unexpected, confusing, and overwhelming, that a person needs to sit with it for a bit before sharing widely. That was the case with the good news I got on Friday.

Here’s the super short summary: I’m in the luckiest third and the chemo is working. A number of my sarcomas are shrinking, the others are stable, and there are no new sarcomas. This is really good news and I’m thrilled with it.

Gold Hooray on a black and gold celebratory background
The thought that keeps repeating in my head

It’s news that is worthy of celebration. Jarrod and I spent the weekend feeling like a weight had been lifted from our shoulders and we could finally breathe. As awful as the side effects have been (and believe me, they’ve been horrible), we can put up with them more easily if we know that the chemo is working.

What does this mean for the future?

Well, we’re not looking too far ahead with too many specifics right now. In the immediacy, it means we continue with chemo with the drugs I’ve been getting. Because my platlets are dangerously low, I’m repeating my bloodwork this Thursday, then (assuming the numbers are better and that a bed is available) starting my third round of chemo on Friday. For the foreseeable future, chemo will start on Fridays. My cycles will still be three week cycles. So there should be chemo, then a week or so of feeling like crap, then a week of feeling better and better.

I’ll do two more rounds of chemo, both with transfusions at the end to help me recover, then have another scan. According to my oncologist, they’ll expect to see continued successful response to the therapy. Essentially, when the first scan shows a good response, the next scan usually does, too. Assuming that holds true for me and I’m still “tolerating” the side effects, I’ll have a final two rounds of this type of chemo after that. One of the drugs that I receive has a hard limit on how much a patient can receive due to how toxic it is. I can’t receive it more than six times in a row. It’s possible in the future I could receive it again, maybe, but it wouldn’t be safe for me to have a seventh cycle of chemo with the same drugs I’m receiving now.

That means that after six rounds, we’ll look at the scan and evaluate our options. Maybe the sarcomas will have shrunk enough that it’ll be safe to attempt radiation. Maybe we’ll have a miracle and they’ll have shrunk to oblivion! Maybe we’ll decide to let my body recover and just monitor what remains to see if they stay stable (this happens). We really won’t know what the options definitely are until we see what’s on the scan.

Admittedly, there’s a chance I might not make it six rounds. There’s a chance that the toxicity might prove too much for me and we’ll have to change course after the scan to try a different drug. We are lowering one of my drugs by 10%. The goal is that it’ll moderate the worst of my side effects without affecting the shrinking. I’ll try to write later this week about the side effects of the past week, but suffice to say they were really awful and I could not have borne them without my husband, mom, sister, brother-in-law, and friends. To be honest, I’m not sure I could face the possibility of them again but for knowing that the chemo is working.

“I can handle getting hit by a truck if I know it’s working,” was an actual sentence I uttered while discussing my willingness to go through misery with my oncologist. And that’s true, I think. Having the support of my friends and family also makes it a lot easier.

As I noted, we’re far from out of the woods and I’m going to continue needing prayers, hope, encouragement, and help. For right now though? I’m well-aware of how incredibly lucky I am. I’m grateful, happy, and smiling. I’m not afraid of those woods. Well, not too afraid, at least.

creepy woods in fog
How I picture the metaphorical woods ahead of me

I’m tired, but I’ll be grinning when I go for my theraputic walk this afternoon. My chemo is working. I’m already beating the odds and that just strengthens my belief that miracles are possible. I’ve got more to offer this world, and I believe I’ll get the chance to make good on that offer.

So, About That Chemo

Since round 2 chemo got delayed until March 9 (instead of starting today, March 8), I figured that this evening would be a good time to finish that promised post about how chemo went. TL:DR inpatient chemo is so much rougher than outpatient chemo was.

I did report to Hopkins in the evening on Wednesday, February 15. We were lucky and our friend, Patrick, met us there while we were settling in to make sure that we got a delicious dinner from Atwater’s (best cheddar biscuits ever). He also then told dog stories to help distract me (Jarrod was also showing me videos of my nephew, but I needed a lot of distraction) while the nurses tried to access my port for the first time. Apparently the first time accessing the port is always difficult, and because my surgery was so recent, there was still a ton of surgical glue on top of where they needed to insert the needles. It was not a painless procedure, and Patrick has my and Jarrod’s eternal gratitude for helping us out and keeping me from screaming. I’ve been assured that the next time it won’t be nearly as difficult and painful to access, thankfully.

The first night was easily the night that we got the least sleep. This will be normal for my inpatient chemo. There are blood tests to be done while my chemo is mixing. Then there a lot of pre-chemo meds (things that protect some of my organs or avoid dangerous side effects) that they have to get through first, before they can even get the actual chemo drip started. In addition, there’s also a huge amount of various hydrating mixtures that they send down the tubes. Every single change that first night requires me being awake, even if I could sleep through having the bags changed. Our nurse was lovely and wrote down the approximate times she’d be coming in to change my bags so I’d at least know what was going on and have a sense of when it was best to nap. Jarrod was a total trooper, too, and helped me not freak out at it all. I think the longest interval of sleep we had was almost 4 hours long. Thankfully, I was able to get more sleep the other nights.  The cumulative effect of all those medical fluids started to be seen by the morning, even though I didn’t actually get my first “chemotherapy” med until around 4 a.m. All told, between around 6 p.m. Wednesday and 7 a.m. Thursday, I had been given so many fluids that I had gained 1.26 kg!

Thursday wasn’t too bad. I was mostly pretty tired, but not nauseated or anything. I was glad that we had packed face and body wipes though. Because my central line was in the entire time I was in the hospital, I couldn’t take a real shower due to fears of getting it wet (getting a central line wet is apparently a Very Bad Thing). Between being able to change clothes though (yay for button downs!) and use the wipes along with rosewater spray from my friend Amina meant I felt somewhat human at least. Jarrod also decorated the hospital room with some pictures and things we had brought. My favorite was a handlettered print our friend Christy made with a quote from my final birthday email from my dad: “Your spirit remains indomitable.” Looking at that helped me feel more indomitable and less scared. Seeing friends definitely helped. One made a handlettered sign that we added to the wall of awesome to keep up my spirits. Do not underestimate what it means to have someone make you laugh when you’re struggling.

signs and pictures decorating a hospital wall
The wall of awesome opposite my bed

Friday wasn’t too bad, although as the day went on I got more tired and developed less and less of an appetite. I also had a near accident with the IV stand. See, it has wheels to make it easy to move it around. However, the restroom has a slanted floor with a drain in it. That slant combined with wheels that don’t have locks led to me lunging for the IV at one point in fear that it would roll too far and pull on the tubes attached to my chest!

Saturday was when the nausea started to really hit. It was just about 7 a.m. (I happened to glance at my phone). Jarrod and I were talking and I suddenly almost doubled over with nausea. Despite the medical team’s best efforts, the nausea didn’t abate at all until that evening. Our friend Annie visited on Saturday and essentially read funny internet essays to me while I dozed in and out of consciousness feeling miserable. I felt a little better in the evening and was able to take Communion when Jarrod’s old teaching parish pastor visited. He has a parish in Towson, just outside Baltimore, and was one of the pastors who helped celebrate our wedding, so it was good to see him, and felt very healing to take Eucharist. I also got to Facetime with my Grandpa while my two-year-old nephew visited him in Indiana which was a total blast and completely lifted my spirits.

It was good that it did because I soon felt nauseus again and sleepy. Despite going to bed early, I still felt exhausted and super nauseated on Sunday. Even when we went home, I felt gross. That continued through Monday when all I could stand to eat was raisin bread. Tuesday I got very brave and added peanut butter banana smoothies that Jarrod makes and are super soothing to my stomach, as well as high in the protein needed post-chemo. I still wasn’t feeling great, but was getting progressively better until Thursday evening when (as expected from my neulasta shot) my joints and bones started to ache so I had to start taking my oxycodene again. That continued through Friday, but at least the oxy kept the pain pretty manageable. My only other awful side effect was increasingly bad heartburn that finally lead to a recreation of an exorcism and Jarrod calling the on-call line to ask for advice. They were able to suggest an OTC that we hadn’t tried. Jarrod ran to the pharmacy two blocks away, picked it up, and by the next morning (after an uncomfortable night spent literally sleeping sitting upright) I felt better for the first time in days.

Saturday evening I felt good enough that I planned to go to church the following morning but that went out the window completely when I woke up at 4 a.m. on Sunday with excruciating pain throughout my entire jawbone. I took meds, grabbed an ice pack, and managed to fall back asleep again for a bit but woke up again in horrible pain around 7 — well before my oxy should have worn off. Jarrod called the on-call line where they seemed stumped, but suggested doubling my oxy and calling back on Monday if I was still in pain. Well, doubling the pain meds didn’t do a darn thing and I had a miserable day. The pain finally abated a tiny bit in the late afternoon — enough for me to see my nephew which was wonderful. It did mean that all I could eat that day was smoothies and a milkshake. I added soup on Monday when the pain had gone down a bit and I could fit a spoon in my mouth without crying. Tuesday we got really brave and added super soft mac and cheese. I didn’t really eat solid food until Thursday. I’m hoping that side effect does not make an appearance this round!

Friday of that week (so this past Friday) we spent the day at Hopkins talking with lots of doctors, nurses, and even a pharmacist. We made plans to adjust things and add a new medication for this round that should help the nausea. No one there really had a good explanation for the jawbone pain other than “it’s not dental” and “maybe the neulasta?” My accupuncturist said that it might be related to the nausea and heartburn I’d experienced since, if I understood her right, if the digestive system is unsettled enough that can lead to intense heat which can be experienced as pain along a meridian that affects the jawbone. So, hopefully now that we have a better plan for my nausea and heartburn, those will be under control, and I won’t have the excruciating jawbone pain.

That said, I’m still really nervous about tomorrow (and not just because the bed still isn’t a 100% guarantee) and the coming days. I’ll keep saying my prayers, remembering how much my family and friends believe in me, watching MLP: Friendship is Magic when I’m miserable, and reading good books when I can focus. I think that’s essentially taking the next right step and trusting in God. If not, I’ll pretend that it is.

Ash Wednesday

I can’t believe it’s been two weeks since my last update. They weren’t kidding when they said that these chemo meds would be much more toxic than the ones I was on in 2015 — the extreme levelling up of the side effects alone is proof of that. I’ll write more soon about the actual chemo and side effects (I’ve even started drafting that post!), but it is Ash Wednesday so I’ll go for the timely post and some of my thoughts on that.

jar of ashes for service
photo credit: Flickr user Lawrence OP

First, I encourage you to read “For Sisters With Nothing Left To Give Up For Lent” by Candice Benbow. Although I’m not the target demographic, Ms. Benbow’s words moved me and made me think that maybe finding ways to embrace the resurrection during Lent wouldn’t be a sacrilege, but an active good that God might be encouraging me toward.

You know how I mentioned side effects? Yeah, they’ve been seriously awful and draining. Those side effects have included literally days of nausea and seasickness so bad all I could do was close my eyes, as well as more than 24 hours of excruciating pain throughout my entire jawbone so bad that, even with my dose of oxycodene doubled to 10mg, an ice pack around my face, and literal numbing gel rubbed on my gums, I was still rating the pain higher than I’ve rated post-surgical abdominal pain (oh, and 3 days later, I still can’t eat anything that requires actual chewing), plus others like insomnia, hellacious heartburn leading to exorcist imitations, and the expected bone pain that was mostly managed by the oxycodene.

You know the end result of all those side effects? I’m fucking tired. Note, I am not looking for advice or solutions or answers for those symptoms. My doctors understand and encourage complementary medicine. We are discussing ways to cope or avoid issues. Every cancer and every chemo is different. What might help Susie, could kill Bethany. I’m sharing because I think it’s important to share and because it relates to my thoughts on Ash Wednesday and Lent.

In addition to those side effects, there have been times I would have given damn near anything to call my dad. It is not okay that he’s not here for me to call and talk to when I’m miserable. I do not understand why God would allow my dad to die less than a year before my mom has to watch her youngest go through this. She shouldn’t be alone. Yes, she’s strong, but I know that Dad and she got each other through the last time I had chemo. I know life’s not fair, but right now it seems horribly unfair and awful to go through this without Dad.

Plus on top of all of the personal stuff, there’s the horror show that is the United States right now where, just as a cherry on the shit sundae, a literal Hitler Nazi program was announced by our president and people actually applauded (VOICES is a lot like a program that tracked and publicized crimes attributed to Jewish people in an effort to whip up anti-semiticism so no one would mind when the govt started killing them, in summary). That infurirates me. Every single damn day horrible things are happening and the only people who seem to be speaking up about it are those of us who tried to prevent this dumpster fire in the first place.

Then, because of all that, people are feeling emboldened to be violent, racist, horrible assholes. Bomb threats are being called into JCCs all across this country. A friend is seeing her student, who describes himself as “a young brown man,” has experienced more harassment and hassling from police and others in their town since November than in his entire life before then. He’s not the only one, but he’s the one who said something to my friend. It’s heartbreaking and wrong.

I think I’d be significantly less frustrated if people who I know voted differently were also sharing on Facebook about the Nigerian man who was detained and asked to answer computer science questions because a CBP official thought he didn’t look like a software engineer or how wrong it is that CBP was checking identifications of passengers disembarking from a domestic flight, or the insanity of associating HBCUs with “school choice.” But they’re not, and that adds to this impression that the world is burning around me because not all of those who people who voted that way are bad people. Many of those ones who I know are good, decent people who were angy or felt like they had missed out. They’re people who I don’t think I’m wrong to expect that they be outraged over Muslim bans or human rights abuses.

So, physically, emotionally, and spiritually I just feel spent. It’s the start of Lent. I’m writing this before I even get my ashes (we’re going to an evening service), and the thought of trying to give something up for Lent? The thought of spending 40 days thinking on the idea that we are dust and to dust we’ll return? I’m really well aware of my mortality and the ashes seem like one can taste them in the air.

However, focusing on the life part? That intrigues me and I find myself waking up a little for that. Maybe I need to focus on the first part — that we come from ashes. So yes, things are ash and awful right now, but good can rise up out of those ashes. Despite the personal and political awfulness that is going on, I have to believe that we can follow Christ into resurrection and new life.

In the Stations of the Cross there are good people like Veronica, the woman who Tradition says wiped Jesus’s face to soothe him. In the midst of Jesus’s suffering, there was kindness. Ultimately, there was new life. In the midst of my personal suffering, there is a bounty of kindness. Perhaps my job is to share that kindness with the world.

 

Trying To Listen To Monty Python

I woke up this morning and realized that I could either be a total grump and annoyed, or I could try to listen to Monty Python and look on the bright side. I’m sure any of you who know me can guess what my brain insisted on attempting. It hasn’t been a total success, but I’ve at least had laughter and joy today rather than just crabbiness, so I’ll call it a win for now.

The reason for the grumpiness is uncertainty. I’m an impatient person who is really bad with uncertainty. I like itineraries and knowing exactly where to be and when, as well as what exactly to expect. I can handle having zero plans, but I am awful at “well, it should be A, but we won’t really know so you’ll just have to wait for the Go/No Go” (yes, we saw Hidden Figures yesterday. It was amazing. If you haven’t seen it, you should go see it as soon as you possibly can, like today).

I’m supposed to start inpatient chemo today. However, Monday, at 4am before my surgery, we saw an email from my oncologist in response to our Sunday email asking for details about Wednesday. It said that we should get a call Tuesday night about Wednesday bed availability and then we’d get a call some time Wednesday confirming availability and telling us to go in. Also, they couldn’t guarantee availability in advance of Wednesday, so I might get pushed back a day. That was frustrating and weird and I tried not to panic about it before my port surgery.

Last night at 8 we got a call from a nurse telling us that three patients didn’t check out, but it was still likely we’d get an available bed on Wednesday, but just to wait for the call. We pushed for a time and were told that the nurse on Wednesday would review discharges around 1pm and call us sometime after 2pm. I’m writing this at about quarter to 3pm. I asked for a number to call if we hadn’t heard anything by 3pm because I am really bad at waiting, especially for something like this.

I’d like to just get to Hopkins, get settled into my room, and start the darn chemo so that I know that if the sarcomas are going to be reduced in size or paused, that will happen as soon as possible. However, I’m trying to not be grumpy. Toby at least was really happy that I wasn’t leaving immediately this morning.

gray cat asleep on a suitcase

I tried to see this morning as reprieve rather than a test of my patience. I shouldn’t have sushi once I’m immunocompromised so we did lunch at Sushi Jin — our favorite sushi place with some nontraditional rolls that we in our American fusion sort of way love (my favorite is one they call a lobster lasagna with cooked lobster in a sweet sauce topped with scallions on top of an avocado roll — it’s decadent and nontraditional, but I love it).

Of course, I’m still me, so even as determined as I am to see it as a reprieve, I’m still frustrated and annoyed at having to wait to even find out if I’m definitely heading to Hopkins. It doesn’t help that I’m still sore from Monday’s port surgery. It was a success, but it looks like I got hit with a baseball and raising my right arm to shoulder height causes me to whimper in pain.

Honestly, what’s helping the most is seeing the incredible response to Third Space Wellness and Jonna‘s Community Wellness Fund to collect funds to cover acupuncture, massage, yoga, and other self care for Jarrod and me over the course of my treatment. My doctors have strongly urged it for our health because cancer treatment is awful and hard both for the patient and her partner/caretaker. I honestly am not sure if I would handle taking care of Jarrod with as much grace as he’s handled taking care of me.

Even more than the money that’s been raised, I’ve been genuinely moved by what people have written. I’ll probably explore it more thoroughly in another post. However, the short summary is that reading what people have written has made me start to consider (and maybe even believe) that I might be what it is that I’ve been trying to be. Apologies if that doesn’t make sense, I’ll explore it more thoroughly in another post. I’ll also write one about why I’m seriously thinking of sending a thank you letter to the team behind The Flash (actors, writers, etc) because one character’s storyline this season is not only hitting close to home for me, but helping me to process and cope.

Edit: Less than 30 minutes after posting this, we learned that a bed will open up for me this evening a little after 5. So, I will definitely be starting my inpatient chemo at Hopkins this evening! It feels so weird to cheer for pumping my veins full of toxins, but the sooner we start, the sooner we have a chance at making me healthy.

We Have a Plan

This week things have gone from zero to sixty, and I have no idea how it’s already Thursday night. The good thing is that the reason it’s gone from zero to sixty is that we have a plan! And backup plans! There’s solid reason to hope that I could win the happy health lottery and end up eventually okay. I might be able to fight this dragon.

green glowing sea dragon in blue glowing water
This dragon, like those in Wrede’s books, needs no fighting. He’s just awesome lights in Wheaton.

So, let’s go back to Monday.

Monday, my brother-in-law drove Jarrod and me to Hopkins, talked with us over lunch at Atwater’s, and kept us on track through our appointment with my new sarcoma-specialist oncologist. It was a really, really long afternoon, but the appointment went well and all three of us walked out with a great feeling about the doctor.

Dr. Meyer really talked with us and took us through step by step. Funny piece of information I never knew — in most cases, by the time that someone is diagnosed with cancer for the first time, they’ve already “had cancer” for 5-10 years. I let out a crazy loud eep when I heard that statistic. It’s because cancer starts out as one single cell that mutates and it can take a long time for that to build up into a full-fledged tumor. I had not realized it could take that long.

Another crazy statistic? The average lifespan for a patient with stage IV metatastic sarcomas that have spread to the lungs who refuses treatment is usually 6-12 months. I’m getting treated, so I should do better than that. It does explain why my oncologist wants to move forward so quickly. Travel will now be after treatment, but he seems confident I’ll eventually be able to travel again. On Monday, Dr. Meyer presented a plan, and what we do if that first plan doesn’t work. The initial plan is two chemotherapy drugs. The results for this protocol fall pretty neatly into thirds.

  • One third of people see no effect on their sarcomas.
  • One third see the growth of their sarcomas slow or pause.
  • One third see their sarcomas shrink.

I’m sure you can guess which third I’m hoping to be in, although to be honest, even pausing sounds good. Shrinking is really good. If my tumors shrink enough, the doctors can try localized radiation which we know works on my cancer — the spot that received radiation in the fall is completely gone now! Right now my tumors are too spread out in my lungs for them to try radiation — such a wide field at the levels needed would likely destroy my lung tissue.

If I’m in the third that sees no effect, there are two other plans. But for now, I’m focused on Plan A. I’m cautiously hopeful, if still a little anxious and overwhelmed. Since Monday, I’ve had blood tests and an echocardiogram to make sure I’m healthy enough for the chemo drugs. This coming Monday I’ll have fully sedated outpatient surgery to install a double port in my chest through which I’ll receive my chemo. Then Wednesday I go back to Hopkins and start inpatient chemotherapy.

I’ll spend 4 nights and 5 days in a private room at Hopkins receiving chemo. I won’t be allowed to leave my floor but I should otherwise be mobile. They have good wifi and I will be allowed to receive visitors. At the end I’ll be pretty nauseated, but I’ll go home, pet Toby, get a shot the next day to spur the creation of white blood cells, then spend two weeks recovering. In the second week I’m home (so third week of my cycle, which starts on Wednesdays) I’ll get accupuncture at Third Space Wellness to also help my immune system recover. Third Space is doing something very cool with our friend Jonna to help Jarrod and me, by the way. That’ll be public soon.

We then repeat the whole three-week process (without surgery this time). In week 6 I get a scan so we can see if it’s working. If it is, awesome. We repeat and I get scanned in another 6-9 weeks. If not, we course correct and try the next plan. If all goes well, in 5 months I could be on the road to recovery.

In the meantime, I’ll hope. As my brother once reminded me, all we have to do is take the next right step and trust in God. I’m going to try my best to do that. It’ll be easier because of our friends and family. I am still in complete amazement over everyone’s kindness as we struggle with this heavy burden.

My incredible sister is coordinating a ton. I am in awe of her organizing prowess. You can sign up to visit or help at the Betharmy Recruitment Form that Jarrod put together. Help in Silver Spring could be bringing food, visiting, or helping me get out for a walk. I’ll be a little particular about my visitors near the end of each hospital stay due to the side effects that might happen. I’m honest here, but it’s an honesty that is somewhat filtered. I didn’t write this post until I’d had some time to think. I’m okay with you all knowing I’ll be nauseated, crabby, and sleepy, but I’m not sure I’m okay with the idea of all of you seeing that Bethany in person at her worst. I do have some pride.

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.