Tag: NED

The NED Life

Published on by JacquelineLeave a comment

Today officially marks 3 years since I finished active treatment for stage iv colon cancer. Now to the uninitiated, that may not seem like a big milestone, but it is. My chances of recurrence have now decreased significantly and will decrease sharply again at the five year mark. I consider July 19 to be my NED anniversary, but today is what my doctors measure by. The five year survival for stage iv colon cancer is somewhere in the teens, with the average lifespan post diagnosis is about 2 1/2 years. Once colorectal cancer is in the liver, as mine was, it is very likely it will come back, even after resection. So with all that, to be where I am right now is a big deal. I’ve had a few scares in the last 3 1/2 years, and despite my many other medical issues, I’m still here and still NED.

A friend shared this piece of prose on Facebook this week and I feel the need to share it here.

“They said to go home”

They said, ‘the scans look fine, your body will recover, you don’t need to be here anymore. The cancer might come back, but until then there’s nothing we can do.”

They said to go home.

They said, “go on and live your life. Take a breath, take a nap, maybe even take a vacation. Go back to your jobs, back to your hobbies, back to laundry, dishes, and paying the bills. Spend time with your family, meet a friend for lunch, catch a movie with your loved ones.”

It sounded nice when they said to go home..
So we went home.

But the home we went back to wasn’t as familiar as we thought.

The paint was the right colour and the furniture was in place, but it wasn’t the same. Our thoughts, feelings, and interests had changed. Our relationships, jobs, and bodies felt so much different.

They said to go home, so we tried to go home, but it didn’t feel like home.

We felt lost. It was as if we had been on a path, kidnapped somewhere in the middle, turned around 20 times, and set off in a new direction. We didn’t know which way was up or down, left or right. We felt stranded in the desert- abandoned, desolate, and lonely.

They said to go home.

But home was out of reach. The home we knew didn’t exist anymore. We wandered around before trying to build a new home. But the new home crumbled and cracked, forcing us to repair, rebuild, or start completely over.

They said to go home.

But they didn’t understand. After seeing thousands of patients in this position, they still didn’t understand. It looked so simple from their perspective. Go home, go back to your life, pretend that cancer never came.

But we couldn’t go home.

Our souls were altered on the deepest level. Our hearts were shattered, our minds were chaos, and our bodies hurt. They couldn’t see it.

Then we saw others. “Do you know where you are going?” we asked. “No, I feel rather lost,” they would say. “But you are welcome to join, and we can pave a new path together.”

In that moment, though we were all still lost, we felt a glimpse of home. Our hearts connected and friendships formed on the simplest notion of being aimless wanderers together. “Thoughts and feelings make sense given all that you’ve been through. Others may not understand, but I can see, because I’ve walked a similar path.”

“You belong here.”

Our hearts began to relax. We took a deep breath of fresh air.

They said to come home.

Anonymous

This is so true. It’s so hard to go from being under close medical surveillance to suddenly being told to go home, live your life, and come back in three months. You go home, but home doesn’t quite fit anymore. You’ve been irreparably changed and you can’t ever go back to the way it was. But no one tells you how to fit back into “normal life.” So please, remember that NED (no evidence of disease) life isn’t easy. It’s a whole new kind of hard with no road map.

30 Months

Published on by JacquelineLeave a comment

I’ve been thinking a lot lately about the length of time that is 30 months. It’s two and a half years. It can seem a long time or it can go by in a flash. 30 months is also the median amount of time that stage IV colon cancer patients typically live after diagnosis. December 28 will be 30 months from diagnosis. I did it, I made it two and a half years after a stage iv cancer diagnosis.

I’ve also been thinking about those who didn’t make it that far. Making friends with other cancer patients is hard because you know some of them aren’t going to make it. That’s especially true when you start making friends with others who have stage iv cancer (cancer that has metastasized). At the same time, it is so important to talk to others who are where you are, or who have been where you are. They can understand the push and pull required to live fully for today and tomorrow, all while wrestling with your own mortality. You can’t be a cancer patient, especially a late stage cancer patient, without wrestling with your own mortality. For all that science has gotten better at treating cancer, it still hasn’t really conquered metastatic cancer.

This is my third Christmas since I was diagnosed with stage IV cancer and Lynch Syndrome in June 2018. I didn’t know it at the time, but my family didn’t think I’d see that first Christmas. I couldn’t see past the next round of chemo, or the pain in my side. I opened my Christmas presents that year from the hospital. We waited until Saturday the 29th to open presents since the whole family would be around. However, my back pain got bad enough that on the 27th that an ER trip was necessary. I spent nearly a week in the hospital with a liver drain draining an abscess. My dad brought my presents to the hospital on the 29th, where we FaceTimed with the rest of family back home and opened presents. Last year, I avoided the hospital, but wasn’t feeling great.

As for this year, I’m not feeling great. I’m back on antibiotics for a UTI that won’t leave. The heating pad is my friend and today it needed the help of narcotics to make me functional enough to frost sugar cookies. There will be a call to my doctor on Monday. I’m am also facing another surgery on January 6th – my fourth since June 2018.

Even with all that, and even facing down my 15th hospitalization, I’m still here. It’s been 30 months and I’m still here. Come January I will hit 30 months cancer free. 30 months cancer free marks the halfway point to the magic five years. The first 2-3 years are the highest risk for recurrence and I’m nearly through them. I still have a bunch of medical issues, some of which still aren’t understood. I’m on social security disability and that’s not likely to change. But it’s been 30 months and I’m still here.

Survivorship

Published on by JacquelineLeave a comment

It is only in the last 15 years or so that the medical community has paid attention to “survivorship.” As cancer treatments get better, more and more people are living beyond cancer. As a result, more and more people are dealing with the long term physical, emotional, and mental effects of having had cancer. Cancer, especially late stage cancer, fundamentally changes who you are; you can’t go back to who you were before your diagnosis. Cancer doesn’t stop impacting your life just because you’ve finished treatment or your doctor says you have no evidence of disease. For me, cancer changed how I looked at the world. It especially changed how I saw God and His relationship to me. It changed my relationship with the Savior as well. I’m sorry to say that I’m not sure I’d have made those changes without my cancer diagnosis, but here we are. Cancer has also changed my relationships with the members of my family.

Fundamentally, survivorship is about what comes next after cancer. It’s about what long term side effects survivors can expect. The medical community is only starting to discover that many of the treatments used to fight cancer have significant long term side effects. Many of those side effects were unknown because cancer survivors weren’t living long enough for those side effects to present. Doctors are only recently educating survivors on some of those side effects, but it’s important that primary care doctors are educated too. Once a patient has been cancer free for x number of years, their care is transferred back to their primary care doctor, who may or may not be aware that cancer treatments can have long term side effects. By long term side effects, I am talking ten years, or even more, from the end of treatment. Despite the many advances in cancer treatment, much of it is still extremely destructive.

Cancer treatment also leaves its own mental and emotional scars. One such scar is something known as “chemo brain.” Chemo brain is categorized by cognitive difficulties both during after chemotherapy. I was lucky enough not to experience chemo brain. For some people, chemo brain can be debilitating.

Even after cancer treatment is over and one is considered cancer free, there can still be that feeling of “doom.” It’s difficult not to think that every new ache or pain is cancer returning. Suddenly, it’s difficult to differentiate between a normal sign of aging or benign problem and an early (or late) symptom of cancer. It can make you feel paranoid and like you’re overreacting. It’s a difficult balance to find, between being vigilant and overreacting. Myself, I’ve been out of active cancer treatment since March 1, 2019 and I still struggle at times to find that balance.

The last thing I want to mention is making the transition from active treatment to surveillance. Emotionally, it can be a difficult transition to make. It certainly has been for me. In illustration, take my course of treatment. From my official diagnosis on June 28, 2018 until I finished chemotherapy on February 24, 2019, I saw one of my doctors about every two weeks. During my recovery from surgery, I saw someone in my surgeon’s office twice. The first was for staple removal and the second was a check in. While I was actively on chemo, I saw my oncologist every two weeks. I would arrive at the clinic for blood work, after which I would see my doctor and he would confirm whether my blood counts were high enough for chemotherapy that day. It was like that like clock work. Then his office wanted to know if I got sick because that could delay chemo, or worse, land me in the hospital. From June 2018 – November 2019, I had ten separate hospitalizations. So during treatment, you’re under near constant supervision. Then one day, your doctor declares you cancer free and you move to surveillance mode. Suddenly you go from seeing your doctor every two weeks to seeing your doctor every 12 weeks. You had your oncologist and oncology nurses to help you navigate your new medical world, but there’s no one there to help you navigate your new post cancer world. It can leave you feeling adrift. It can be a scary thing, and it was for me. It’s something I still struggle with from time to time. But like so many other things in the cancer world, you learn to live with it. You remember how to put one foot in front of the other and just keep going. Cancer treatment isn’t for the faint of heart. Neither is surviving cancer.