It’s been 5 years since Stephanie Chuang, founder of The Patient Story, was told she was NED (no evidence of disease). As part of Blood Cancer Awareness Month, she celebrates by putting together a very personal video diary with the top lessons she learned since the Non-Hodgkin lymphoma diagnosis.

She hopes her documented ups and downs will resonate with some of you out there and be helpful to you.

Looking back

December 10, 2016. Fun times on a date with my family in San Francisco. These would be the last non-cancer memories captured on my phone. Just three days later, I would hear, “I’m sorry you have lymphoma,” and be thrust into an out-of-body experience — stuck in the hospital while doctors ran tests and scans for an entire week to figure out what was wrong with me.

Alien-like images from dozens of tests and scans. This was the hardest period — not knowing what the diagnosis was and just trying to figure it out. There were tests upon tests in under a week. I was poked and prodded constantly, including an excisional biopsy (where I was fully under so they could remove and test the lymph node) to the bone marrow biopsy (that only required local anesthesia before the “drilling” began).

Now, no evidence of disease for five years and, for that, I am really grateful. This is a walk-through of all the high and low lights that I’ve gone through with the main goal of sharing the top tips I’ve learned throughout this process and throughout the years. I hope it will resonate with you and help you in a meaningful way.

A lot of this, I filed away and forgot that it happened. And that’s married with a lot of things that have happened in the recent years of survivorship. Feelings of anxiety, stress, and a lot of emotion. Anxiety from scares of recurrences and a lot of tears. Working in a space where it can get pretty somber and where we’ve lost some pretty incredible people.

However, the main message I hope you take away is, you are not alone. After speaking with hundreds of other people impacted by a cancer diagnosis and having in-depth conversations, we really do share a lot of the same thoughts, feelings, and emotions. You are not alone. We are definitely not alone.

Tip #3: Seek out the humor

Seek out the humor in situations, if you can. Of course, there are some [days] where it will seem next to impossible. But if you can, it really can help.

For instance, the nurses and physician’s assistants who were taking my temperature [during my] first week of hospitalization, it was happening all the time and they were announcing the number so often, I joked that it sounded like a radio jingle.

For me, my family really was everything.

Tip #4: Draw your boundaries

Draw your boundaries and pick your people. You don’t owe anyone a call. Let people know about your diagnosis if you want them in your corner and you know they’re going to give you the kind of support you want and need.

Though I have to say, my people started a support campaign and it was incredible. Love poured in from my closest inner circles to people I may have only met a couple of times. It was truly uplifting.

But for me, my family really was everything — from home-cooked food at every meal to helping me with blood thinner injections twice a day, every day. And those really added up.

First up: ovarian stimulation with lots of shots. I got a lot of help with some of those shots. Then came the egg retrieval surgery and then embryo freezing. They did try to preserve my fertility during chemo by giving me a shot of Lupron beforehand. (Spoiler alert: My husband and I were blessed with two children in the last few years without dipping into our reserve. And for that, I am so, so grateful.)

Next up was the first cycle of chemoimmunotherapy. Always really unsettling to see the nurses put on hazmat suits just to touch the bags — and that’s bags of stuff that would be going inside of me.

By the end of treatment, more than 600 hours of infusion. The drugs killed both the bad and the good cells, and that’s where side effects came in.

You are a big part of treatment decision-making and with that also come quality of life decisions.

Tip #7: There will be ups & downs and that is okay

This experience is not going to be a straight line and that is okay. Anxiety is natural to have. I’ve struggled to push it away, but I’ve had some scares of the cancer coming back.

I pushed for extra scans a few years after treatment. My doctor did not advise it, but she also gave me room to decide and I appreciated that.

This experience is not going to be a straight line and that is okay.

Tip #8: Wear loose clothing without metal

For those of you headed to a scan, wear loose clothing without any metal. I didn’t have to change into a gown because I wore loose clothes and sweatpants. No buckles, no metal, no zippers. If you’re a woman, you use bras usually — just don’t have any wiring. That way, you don’t have to change. Again, loose clothing in case you need IV so that they have access.

Give yourself grace

I try to remind myself all the time and I find it’s pretty hard to do, but that is to give yourself grace and don’t “should” all over yourself. It’s something I really do need to internalize.

I’ve struggled a lot throughout the work I do for The Patient Story to fight survivor’s guilt. Why do I get to live when others don’t or didn’t? It’s especially hard after becoming friends with incredible patients and advocates, and unbearable when we lose them.

I’m not going to say who, but there’s someone I got to know — an incredible woman — and she’s been letting me know in her words, “It’s getting pretty bad.” She said, “I’m going down fighting.” When I read her message, it really stung because it’s happened multiple times in the last few years that I’ve been working on this and it just gets hard.

I’m still a work in progress, but I try to remind myself to celebrate each win that we get to amplify the voices of these amazing people.

Ultimately, I hope you take my five years after treatment as a win not just for me but for you, too. [I’m] not saying my experience will be yours, but I am glad you found me and our community, and just know it is a lot more hopeful than all those outdated statistics we find everywhere.

Life with and after cancer is not easy, it’s not pretty, and it’s definitely more brutal for some than for others. But there is a lot of hope in how we can live in a meaningful way despite a diagnosis.