I noticed a window at church today that I haven’t noticed before.
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.
I can’t imagine what your brain must be going through right now, hearing news like this. That said, your writing is extraordinary, and even in the darkest moments, you’re STILL making me think — the bit about the intersection of immigration/healthcare is something I’d never considered and is SUPER interesting. I’d love to talk to you more about this, if you’re feeling up to it. Thank you for continually writing and sharing this journey with us, and know that you always have my support (even though we haven’t seen each other in years, though with social media it doesn’t feel that way).
I would love to talk more. Plus, as someone whose writing I genuinely admire, your kind words mean even more, so thank you.
And yes, social media makes it seem much more recent!
Bethany you are a fighter, and a wonderful compassionate fighter at that (a rare combo!).
I can’t pretend to know what you’re feeling or going through, please know that I’m praying for you and Jarrod, and am here for you. We may not know each other super well, but if there’s anything I can do, if you just want hang out and talk animals or want to go out to Lost Dog Ranch and see the pigs, just let me know.
I will definitely have to see the pigs at some point — that sounds incredibly relaxing and fun. I really appreciate your support. Seeing the good that you’ve done (and continue to do) for animals has helped inspire me to try harder to help.
Bethany, you don’t know me. But I know your mom and she’s told me what you’re going through. She sent me the link to this post of yours.
I just want you to know that I’m here for your mom. We’re colleagues and friends and working together on a field trip tour for SEJ this October.
I think you’re enormously brave. But after spending time with your mom recently, I see where you get it from. Hang in there. We’re all rooting for you.
Thank you. I’m so glad that my mom has friends like you. I love her so much and want her to have the best support network possible. I know that she loves her science work and the good that it accomplishes in the world. I’m lucky to have her as a mom and a role model.
All I got is I love you and I’m praying for you and I know for a bone deep fact that grace really does bat last.
Love and hugs are awesome.
xoxoxox
You are so brave, Bethany. May God grant you both peaceful moments in this time of trials.
I’m not so much brave as surrounded by brave people who share their strength and bravery so that I can keep taking the next step. I appreciate the prayer for peaceful moments.
Our prayers and hugs to you both for strength to keep fighting. You are both in our prayers always. Lots love to you both.
Thank you *hug*
You are literally the strongest, bravest woman I know, and the universe is going to grant you that miracle or ELSE. xxx
You do know that reading about strong, awesome heroines is a part of finding the strength to continue, right? So you’re a huge part of any strength I have. *hug*
Praying for you and Jarrod. This really, really stinks. But, you are really, really loved. Don’t hesitate to speak your needs. We are here.
Thank you *hug* The last two drives to/from Hopkins were to the sound of you and Lisa catching us up on the latest fashion news. You helped keep me distracted so I didn’t fret and worry the whole way.
A singing coach once recommended swimming to me as a good exercise to increase breathing strength. I’ll be praying for you and Jarrod. ❤
Bethany,
I do not know you, but just now have received a link for your blog from the president of the Fairview Park Women’s Club. I know your mother a little bit from this women’s group, and will say that everyone admires her. I can see why. (I am a relatively newcomer to the organization compared to your mother’s many years of service). I see her in your articulate, sensitive, humorous writing…such talent in your family. I was so saddened about the sudden loss of your father, and your Christmas thoughts echoed that so eloquently. I do believe in miracles and science and will be praying they come together for you and the many others you mentioned…and there’s nothing wrong about being selfish. I doubt, however, that you ever have been so. Ellen
Thank you. Prayers are very needed and appreciated.
Beautiful and inspiring, just like you, and gives me a little better handle on what/how to pray, which I do, and think of you, every day.
On a much lighter note, you’ve inspired me to re-watch a certain animated show about friendship for the first time in a while, so thank you. 🙂
Friendship is important. I’ve often thought of a phone call with you, when you were at Chicago and I was at Xavier. I was sitting on the steps by the armory, telling you about some absurd drama that was happening, and you told me essentially that I was really good at telling a story that should have seemed sad and depressing, but that instead, because of how I told it was honest and made you laugh. I took it as a compliment and have held it near my heart when I worry about whether sharing something will just depress people. I’m so glad you’re my friend.
Bethany you are such a fighter and quite possibly the strongest person I’ve ever met. Your smile radiates a room and it will be missed here at work. Just know that you are thought of daily. My offer is still extended — if you need anything . . . you know how it goes.
Sending vibes of healing, strength & comfort your way.
*HUG* Thank you. I think that you’re far stronger than I am. I was so looking forward to being back in the office. Being remote and at 20% time just won’t be the same. I’ll be in Baltimore every three weeks, so I might take you up on that offer.