I started this blog post with the intention of writing out a detailed chronological account of how I got diagnosed with cancer, but it turned into a list of me venting what I have learned. So I’m just going to let this post be what it needs to be. The pieces are all here.

Things I Have Learned in the Past Few Months in No Particular Order

When you find a lump on your body, get it checked out. Just in case. If you get it removed, make sure your husband takes a picture of it because you will be doped up when you see it and you won’t remember asking the poor anesthesiologist a million times if it was squishy.

If a doctor tries to minimize your situation (@ orthopedic surgeon Theodore F. Jordan) but your gut is telling you to keep pressing, you advocate for yourself and find a new doctor who will actually listen and care (@ Dr. Oghale Eleyae, I love you). You will find a doctor who cares about you. And you might be bitter for a while about the doctor who told you it’s just a ganglion cyst and you can just live with it!!!

Rare odds are rare. That does not make them impossible.

The simple question “What did the doctor say?” does not feel so simple when your head is spinning and you’re having tremors and you’ve lost your appetite because of all the things the doctor said.

When you tell people you have cancer, they will sometimes react differently than you thought they would, and you might feel disappointed.

People don’t want to know the name of what you have (extraskeletal Ewing’s sarcoma) – they want to know what it means (soft tissue cancer).

Sometimes loved ones’ well-intended positivity and encouragement will make you very angry. But it’s okay because your mom-in-law will know exactly what you need to hear and you will feel happy again when you get off the phone with her.

You will quickly realize who matters most to you when you decide who you need to tell first.

The way you smile when you’re uncomfortable and try to make light of a situation by joking makes some people uncomfortable. Likewise, the way some people only frown and look at you very seriously/concerned makes you uncomfortable. So it’s a never-ending cycle and everybody is uncomfortable.

Some people will make vague offers to help you, but those offers never amount to anything (although their heart is in the right place and you acknowledge that). Others will be very specific, offer practical help, and follow through with their word, which will make you feel so very loved.

You don’t want to tell everybody you have cancer because you don’t want people treating you differently because of pity. At the same time, you kind of want people to treat you a little better… because you have cancer, for crying out loud!

Your bills are still due on the same days, even if your work is consistently interrupted by doctor appointments and tests.

Pharmacies can be confusing, frustrating, and unhelpful sometimes. If you hand them three prescriptions, they may only fill two of them with no explanation, leaving you to go a week without your post-surgery antibiotic.

You will immediately start to deeply appreciate every second with loved ones, recognizing each moment as a gift. Hugs last a little longer because you linger. Every detail must be soaked in and not taken for granted.

In the movies and TV shows there is a very clear moment where a doctor walks into the patient’s room, sits down, looks them straight in the eye, and says those three words no one ever wants to hear: “You have cancer.” But in real life that may not happen. You might figure it out yourself by doing tons of research, reading case studies, digging through very graphic pictures of tumors and surgeries, and comparing experiences. And then you lightly tell your husband, “We haven’t talked about what we are going to do if this is the worst…” And he continues naming it “the worst” in future conversations. And you call your doctor’s office (again) because you haven’t heard back about any of your tests, and the assistant casually reads the words written on your MRI because she doesn’t know what they mean: sarcoma. And your heart drops because you were researching the night before and the last article you settled on, the only tab still open on your phone browser, was about sarcoma. So you know what it means as soon as the word is out of her mouth. And when you see your new doctor for the first time, he turns around and says, “So! Sarcoma?” because he assumed your primary doctor already told you. But nobody has officially told you anything. And after the mass is removed, your primary doctor calls you into his office (a week after you have read your pathology report on your patient portal), so he can charge you a $30 copay to watch him read the report for the first time and then say, “It’s not what we were hoping for.” But you feel weird because not a single person has said the word “cancer.” And it’s even weirder because you have already met with your oncologist, but you still haven’t heard that word. But you’ve said it. Just you.

You might end up telling your supervisor your doctor suspects cancer (he didn’t use that exact term, of course) a month before you tell your friend group because, well… I guess because you have to. Gotta take off work.

Looking back, you will recognize God’s hand so clearly. This will help you remember He has a plan.

Most of the journey consists of asking questions and waiting. Then getting maybe one or two answers. Asking more questions. Waiting, waiting, and waiting some more. Getting another answer. Etc. As of today, 5/23/23, I have more answers than I had when this started in February. But I also have more questions. The pattern says the next step is: waiting!

In the days and weeks in between appointments and tests, you’re expected to just… do life. And be normal. And do your job. And pay your bills. And fold laundry. And mow your lawn. It’s a very strange feeling.

It’s frustrating. Especially that moment when you realize, “I am at the very beginning of this long journey.” Because no matter what you do or who you share it with, you cannot hurry time. You can’t make your appointment tomorrow at 8:00 a.m., thank you. You can’t fast-forward. So you trust Jesus to carry you and help you get through this, one day at a time.

So, if you’ve made it this far, there you have it. I’ve been learning a lot in the past (almost) four months.