The Complexity of Remission Remorse

The displacement one may feel when diagnosed with blood cancer, in my case, specifically, multiple myeloma, was/can be stifling. The way you experience normality and your safe space changes when there is a lot of unsureness.

Let’s talk about the psychological aspect of completing treatment and numbers, thankfully/hopefully, consistently diminish...then what?

Well, the term remission is a welcomed and encouraged prospect. However, the achievement of a new and better health outlook may come with resentment. Let’s delve…

When the cancer is at bay

So, what does it all mean when your doctor informs you that those dreaded lines of treatments (whether pills, infusions, and/or stem cell transplant) have done what they were supposed to do?

The cancer is at bay, and after testing and more testing, it seems to be eradicated. The news may be met with, “Um, okay, what does that exactly mean”?

Well, it means those mutated cells that were on the speedy wave, crowding and moving differently than their normal counterparts, are now playing nicely and have been re-invited to the party. According to the National Cancer Institute, remission means, “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.”¹

Remission remorse...what gives?

What I’ve found is that, though many experiences may be quite different, there seems to be a common reaction when we talk about reaching that mark of 0 spike and no residual disease: CR (complete remission). Our personal thoughts can be elated and it may take time to absorb the news.

The flip side of elation may also be met with naysayers who have also been down the road of remission. Many that have achieved remission have also met relapse, and for some, multiple times. The toll of having no cancer today, with the possibility that it may build back tomorrow, can play on a person’s mental structure. When we hear cancer no more, we don’t necessarily expect to hear that the news may be just for a limited stretch.

Sulk with joy

Though I understand the doubt and mistrust of the word “remission,” in no way, should others' experiences rain on your parade in making it through the finish line. There are no rule books to cancer in how to feel, how to absorb the process that many of us have to endure.

It can be a hard road for all of us. We sometimes feel guilty about reaching the goal after the toxic medications, pain, and fatigue, Remission is a huge feat…whether it is limited or a long outcome.

I find reaching remission is similar to telling family you have blood cancer: being careful how the news is shared, so they are not overwhelmed about your diagnosis. The worst thing I’ve found in cancer is that in some cases it feels like walking on egg shells in how we make other people feel. The finish line can be very personal and quite emotional, but deciphering a word and making it feel less hopeful is not the way to go.

Remission remorse

Words can take on different meanings and different perspectives. When we speak about life with blood cancer, also remember there is plenty of room for hope. The mark of why go through the process of extending life with blood cancer is part of hope.

Remission remorse may be your own unique experience. You could relapse or not, but the end goal of extending life and reaching the best quality of life that you can is key. Don’t forget the end goal, and feel good about embracing the word...for the word provides you that extra spark you’ve been fighting for.

The time to fight is now, with integrity, grace, hope, and a smile…when you feel like it