Jen’s Update: The One Thing You Need To Stop Saying To Cancer Patients

Since going public with my diagnosis I have had many people send wonderful words of encouragement:

“You’re so strong!”

“You not only inspire me. You inspire SO many people!”

“Continuing to send thoughts and prayers!”

“Sending an army of LOVE to your side!”

“My (insert friend/relative/coworker) just died of cancer, but you’re strong. You’ve got this!”

Wait…back up just one sentence.

I am beyond grateful for the friends, family, coworkers, and complete strangers who have rallied to my side over the last six months, but can we make a promise going forward?

Stop telling people with cancer about all the people you know who’ve died of cancer.

It’s not that my heart doesn’t ache for you. It does. But going through cancer treatment is a lot like riding a rollercoaster. There are many ups and downs, and even the strongest cancer patient can’t be strong all the time. Actually, screw that. Anyone who is going through cancer is strong. Strong, and scared, and wondering if they are going to be on the right side of the survival rates they’re given. Because some people aren’t, you know. It’s simple math. And I know plenty of people who have died of cancer who were as strong as they come. I’ve been to their funerals. I’ve prayed by their caskets. I’ve cried with their families. They didn’t LOSE their battle with cancer. Sometimes the cancer is just too aggressive, and that all too real fact is something that keeps me up at night.

Will I be on the right side?

It’s been almost six months since my world was turned upside down with breast cancer, and none of it has gone according to plan. I mean, if you can have a cancer “plan”.

They originally thought I had Stage 1 cancer, but it quickly grew to Stage 3. They talked about making certain incisions during surgery, but ended up changing the plan because the cancer had spread to my skin.

Then, more than two months post-op, and about six weeks into chemo, the cancer came back.

Yes, I may have looked and felt as strong as a person with cancer could feel, but the cancer came back.

It was a Sunday in August when my husband decided to get the kids out of the house and take them to the pool. Despite him telling me to stay home and get some rest, I decided to go with them. There wasn’t much I could do other than sit on the side of the pool, but I was so tired of missing out on spending time with the kids this summer that I went along.

When I got home I was changing out of my bathing suit and noticed three bumps on my skin. They looked like bug bites, but how random that they would all be so close together, and right by my surgical scar.

I showed my husband, and knowing that it would be better to find out it was just nothing, I called my surgeon the next day. How long had they been there? Who knows? I woke up for work every day at 3:30am and got dressed in the dark. Not to mention that I was not looking a lot at my newly changed body.

A few days later my doctor called me, and I immediately knew. If nothing else, I’ve gotten really good at deciphering how well a conversation is going to go with one of my doctors by the way in which they say, “Hello. Is this a good time to talk?”

I had a recurrence of cancer on my skin. I was told that it is very rare for breast cancer to appear on the skin. And it goes without saying that “rare” and “cancer” are two words that you don’t want uttered in the same sentence.

This wasn’t happening, not again.

But it was.

I was already suffering from insomnia, but the recurrence of cancer made it even worse. I would wake up and immediately my mind would start racing. I would spend hours at night wondering if this meant that I was going to be in the group of people who didn’t survive my stage of breast cancer. Stacked on top of that number were the lives of every person I knew who had died of cancer. Then add to that the people who kept reaching out to me and saying things like, “My Dad just died of cancer, but you’re strong. You’ve got this.”

Do I? Each of those comments felt like a tombstone, and they were being stacked, one by one, on top of my chest so that I couldn’t breathe.

My surgeon discussed the options: surgery to remove the skin, or leave the skin and start radiation in conjunction with chemotherapy. They decided to leave the cancer on my skin so we could see how the treatments were working. And I obsessively took a picture of the cancer with my phone every night, so I could track the progress myself instead of wondering if it was getting smaller, or if it was all in my head (Side note: I also had to tell my kids to stay off Photos on the iPad, ESPECIALLY when their friends were over. Thanks iCloud!)

Whereas my chemo was supposed to have wrapped up by mid-October, we had to start from the beginning. So much for chemo #3 and being halfway finishe.! I would start the first of six new chemo treatments the following week, and start prepping for radiation.

I met with my new radiation oncologist, who explained that my radiation treatments would last longer than the normal patient’s. I would undergo the standard five weeks of long-range radiation: one treatment, every day, Monday through Friday. After that I would have two additional weeks of close-range radiation. The grand total: 38 treatments, ending in October.

Even with this plan in place, it was difficult to remain positive every day. It was also difficult to have a job that was so public, and I started to question whether I should’ve gone public with my diagnosis in the first place. If I could go back, knowing what I know now, would I have gone public with my story? If it helped just one person, then yes, of course. Plus, we had a Y98 Night at the Ballpark coming up where hundreds of people bought tickets to raise money for Siteman Cancer Center.

This cancer was being total pain in the ass, but it was helping people. I could no longer navigate the emotional side of this scary cancer on my own, though. I knew I needed to talk to someone.

I first spoke to a counselor at the end of August. The counseling website explained that people who have been diagnosed with cancer can suffer from post-traumatic stress, and that perfectly explained how I felt after my cancer came back. I was a wreck as I walked into Siteman, and passed a long line of people with cancer sitting outside. I told the counselor about the recurrence, and how it consumed my every waking thought. And my kids – how my heart ached every day as I worried that I wouldn’t get to see them grow up. And the people who felt the need to list all their loved ones who had died of cancer, and how I felt like a horrible person for feeling anger, not empathy, when I would hear their comments.

“Those are legitmate feelings you’re having. Many people feel extremely uncomfortable talking about cancer, and sometimes they just keep talking and saying things they shouldn’t. It’s their way of relating to what you’re going through, but that doesn’t make the fact that you are feeling upset any less valid,” she said.

“They don’t realize my cancer came back, and they are haunting my dreams.”

“What about your cancer treatment can you control?”

“I don’t know,” I said, weeping, “Nothing.”

“No, you can show up to your treatments.”

“Well, that’s a given,” I said.

“No. No it’s not.”

Showing up. It seemed so simple, so obvious, but it was true. Showing up. That was what I could control. So I took that advice to heart, and showed up for radiation every day. I looked forward to it. I looked forward to chemo. What person looks forward to chemo? This girl. I felt like I was doing something. It was the one thing I could control. One week my chemo was cancelled because my white blood cell count was low. I had waited three weeks for this very day, when they would stick a needle into the port in my chest, and they would pump poison through my veins to destroy the cancer. It wasn’t happening, and I was devastated. So, I told my husband that I would give myself a 24-hour pity party and then get back to work, because I had radiation in the morning. I had to show up.

Showing up is also easier sometimes when you don’t know how bad you have it. With just two radiation treatments left, I was in the doctor’s office, and when I saw the looks on their faces when they saw how bad my skin was I just lost it. Through all of this I’ve found myself holding it together 95% of the time. The other 5%? Well, let’s just say I’ve cried more in the last six months than I’ve cried in the last six years. My skin was a wreck and intentionally so. They wanted to damage the skin so much that I even started going for another weekly treatment where they would heat the affected skin for an hour, and then more cancer cells would be damaged by radiation over the next few treatments. On the last day of radiation, when I rang the bell, I had no skin left. It ended three days before Halloween, and I joked that I could have my own gruesome costume if I went around topless. And I cried, because when I walked out into the waiting room my husband and my friends were there to watch me ring the bell; a symbolic act that was going to take all of two seconds, but they showed up.

I rang the bell twice, once after five weeks of long range radiation, and then again after the following two weeks of treatment. The bell ringing is bittersweet, because it means it’s the end of showing up. It’s been freeing, not having to go to the hospital every day, but it also feels to a certain extent that I’m without a net. I mean, what’s next when you don’t have to show up for that appointment? What’s next?

I have two remaining chemo treatments, and hope to ring my final bell in December. After that, a scan to make sure that the cancer hasn’t spread anywhere else in my body. If you don’t hear any updates after that, just know that it takes a while to process how exactly to explain that to people. It just took three months for me to publicly admit that my cancer came back because I had to make sense of everything I was going through. I am again reminded that none of us are promised tomorrow. So many things that I used to worry about or fight over, I’ve come to realize, are just total B.S. I try to enjoy every moment with my kids. I try to squeeze in as many lessons about caring as I can, and hug and kiss them and tell them I love them a million times a day. My love for my husband has grown deeper than I ever imagined, and I can’t tell my friends enough how much I love them. I will show up for all of them every day. And I don’t get angry anymore (okay, AS angry) when people list all the people they know who have died of cancer. They are in my prayers, and I hope they know that even though we cancer patients are among the living, we already know their pain all too well. We don’t take for granted for a second the fact that we are lucky enough to keep showing up to life every day.

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