setback n. a problem that makes progress more difficult or success less likely
Source: Merriam-Webster's Learner's Dictionary

My father died of cancer in 1994. We knew almost from the outset that his cancer would take his life. Surgery confirmed that his cancer had spread too far to be treated, and he passed away almost exactly a year after his initial diagnosis. He was 69 years old. It seemed too young at the time, and now that I'm 53 years old, it really seems too young.

I've had a number of friends who had cancer and after initial treatment, whether it was surgery, chemo, radiation or a combination, have remained cancer-free long enough to be considered "cured." Some are even decades away from their cancer fight.

I supposed that I thought of a cancer diagnosis as binary — either you die from it, or you beat it. Alex's cancer journey is certainly not binary, and I'm learning that is true for many people.

We're approaching the second anniversary of Alex's cancer diagnosis. He was diagnosed with Hodgkin's lymphoma on Feb. 11, 2015. The "good" cancer, we were told. Except there's no such thing. Six months of aggressive chemo followed. Alex's follow-up PET scan revealed that the chemo had not worked. More chemo followed, and we spent last Christmas and New Year's in the hospital for an autologous stem cell transplant.

In February 2016, Alex had a clean PET scan. He was in remission at last.

He followed up with consolidation chemo, the purpose of which was to keep him in remission. During the following months, he kept getting stronger and stronger. He began to look and act more like himself. We cautiously tried to live our lives and ignore the specter of cancer hanging over our heads.

Alex was scheduled for a routine PET in October to monitor his disease. I tried so hard to keep "scanxiety" at bay, but I will admit I did not feel optimistic. It's hard to keep getting your hopes up when you get smacked back down at every turn.

We were fortunate to be able to meet with Alex's lymphoma specialist the same day as the scan. The doctor broke the news we feared. The cancer was back. A new spot had lit up in Alex's chest. Setback.

Options were presented, but then the doctor said, "Neither of these options are curative."

He talked about clinical trials and new therapies. He talked about slowing the progression of the disease. He talked about buying time.

The game changed for us at that moment. Everything Alex had been through was with the thought, the hope, that he would be cured. That he would win.

But now we're buying time. Buying time for a 26-year-old man.

No parent should have to know what their child will die from. No person should have to live with knowing what will take their life. Yet, that's where we are. In this place, like so many others.

You would think that maybe living with autism would be enough, but things don't work that way. Life isn't fair, we all know that to be true.

Throughout Alex's illness, friends and family have asked how much he understands about what is happening to him. We respond with what we believe: We think that he understands most of it, that he knows that he is sick, and that he trusts us enough to go through all of these terrible treatments. We think this because of how well he has been able to cooperate and by how he pulls himself together for treatments that are difficult. But now, with this news, I'm not really sure. Does he understand that the game has changed? I don't know. Honestly, I hope not.

What, exactly, does all of this mean? We keep fighting, relying on the best medical science has to offer. Alex has finished two cycles of a clinical trial and will get a PET scan in early December. His doctor is thinking several steps ahead about what comes next if this treatment doesn't work, or once it stops working. New drugs and therapies are being tested and approved every day. The drug trial he's on didn't exist when he was first diagnosed. The FDA-approved drug he'll go on next was approved less than six months ago. The hope is that we'll keep the cancer at bay long enough for something new to be discovered.

As we forge ahead with treating his cancer like a chronic illness, we know that we also have to savor the time we have. Ironically, he feels better than he has for almost two years. The new tumor is small, and at this point he isn't showing any cancer symptoms. He has no side effects from his treatment.

We have to do things, appreciate things, while he still feels good. A trip we were going to take in a year, once Alex was "fully recovered," has been moved up to a few months from now. He's feeling well right now, so we need to take advantage of that. I'm looking forward to Christmas at home (last year we were in the hospital) and time with family. We don't know how much time we have, but we're going to make the most of it. We're trying to look just a tiny bit ahead and not try to see past the bend in the road.

Alex's cancer journey has become more uncertain than ever, but we will continue to forge ahead for as long as we can. We will follow Winston Churchill's words: "We shall draw from the heart of suffering itself the means of inspiration and survival."

Editor's note: To read more, visit Carrie's blog, at carrieforster.blogspot.com/.


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Have you had to deal with a setback in your treatment? How did you approach it? Share your comments below.

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About the Author

Carrie Forster is the mother of Alex Forster, a 26-year-old man with autism who was diagnosed with Stage II (bulky) Hodgkin's lymphoma in February 2015. Adding to the complexity of Alex's cancer treatment is the fact that Alex has autism and is nonverbal. His parents have had to learn to be Alex's advocate and voice, especially now during Alex's illness. Alex lives in an adult family home in Appleton, not far from his parents. Alex's family also includes his dad, John, his sister, Jessica, and her husband, Rusty.

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