As a cancer survivor, I consistently have people asking me about my current status. I don’t mind when people do so, and I generally let people know that I am in remission. What does get old, though, is some of the responses I get from people who misunderstand what I mean by remission. In this post, I will briefly touch on what remission means to me and what I have found it says to others. A fellow cancer survivor asked me to do this post so she could share it with her family.
The definition of remission
Before going on, I would share this definition of remission from the National Cancer Institute:
remissionNational Cancer Institute
A decrease in or disappearance of signs and symptoms of cancer. In partial remission, some, but not all, signs and symptoms of cancer have disappeared. In complete remission, all signs and symptoms of cancer have disappeared, although cancer still may be in the body.
As I read the definition of remission, I can’t help but notice that the word cure is missing. I have always thought remission meant that cancer had been kept at bay for a short period of time. I never really thought remission meant anything other than that. But I’ve come to find out that others do.
Remission is thought of as a cure by some people
There are times when I tell people I am in remission they will say something like “oh, so you’re cured now” or “that’s great you were able to get rid of your cancer!” At first, I didn’t think much of it. But after this happened enough times, it started to become noticeable. I don’t know if it is because a lot of people have a different understanding of what remission is. Or maybe this occurs because people are hopeful that the remission is complete and there isn’t any cancer left in my body.
No matter what the reason, it just seems odd to me for people to act as if I have been cured after I say I’m in remission. Whenever someone acts like I’m cured, I can’t help but think of the maintenance infusions I go through every eight weeks. Plus, there are the scans I will likely have for the rest of my life to check the current status of my lymphoma. Even if my lymphoma never comes back as active cancer (which it likely will do), I will be treated by doctors as if I have a chronic condition for the rest of my life.
Learning to accept lymphoma as a chronic condition
I still don’t like it, but I’m learning to accept lymphoma as a chronic condition. Maybe that is why I get slightly irritated when other people seem to think I am cured. Perhaps people saying something about my being cured makes me remember that I am not cured and may have to go through full-blown chemotherapy again, or possibly something even harder on the body. I try not to think about what will happen when I fall out of remission. Yet, I find it hard to avoid the topic in my mind when reminded that there is currently no real cure for lymphoma.
Going forward I plan to stay positive about remission
Even though I get annoyed internally when people act as if remission is a cure, I try never to show my irritation. I hope to stay positive about being in remission. When people ask for more details, I let them know what lymphoma is and what my being on remission means. The person I am speaking with may someday have cancer or become a caregiver for a cancer patient, and I hope to pass on a positive attitude to them. Plus, helping to educate them may make their experience less of a shock when they have a personal encounter with cancer.
Today’s song: Don’t come around here no more!
Tom Petty and the Heartbreakers created the perfect remission song. In my head, I like to tell my lymphoma to stay away, and this song sums it up perfectly. This live version of the song shows how great of a group the Heartbreakers were. I feel sad I’ll never get to see them live again.
Bonus Song: Stand Back
This song obviously has nothing to do with cancer. But aside from the apparent “Stand Back” reference to being in remission, I can’t help but think of this line in the song: “No one knows how I feel, What I said unless you read between my lines.” That almost sums up trying to explain remission to people.
Bonus Bonus Song
OK, I know I usually only have two songs of the day. But, I can’t have both Tom Petty and Stevie Nicks on a list without posting the song they did together. That would drive me crazy if I didn’t include this song.