Cancer

Trying To Listen To Monty Python

~ Bethany ~ 4 Comments

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

~ Bethany ~ 7 Comments

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

~ Bethany ~ 24 Comments

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.

So This Is Christmas

~ Bethany ~ 2 Comments

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

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

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

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

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

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

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

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

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

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

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

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

Almost There, Sort of

~ Bethany ~ 4 Comments

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

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

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

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

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

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

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

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

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

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

~ Bethany ~ 2 Comments

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

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

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

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

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

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

I Think He’d Have Been Proud

bethany and her dad in front of a beach
~ Bethany ~ 8 Comments

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

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

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

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

~ Bethany ~ 2 Comments

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

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.