June 3, 2014: Seasons of Survivorship

I feel like my life as a long-term lymphoma survivor is like those series of photos you sometimes see, depicting a changing landscape through many seasons.

The concerns of a survivor immediately after diagnosis are quite different from those of a person who’s been through various treatments — be they “watchful waiting” or something more aggressive — and years of wondering when, or if, treatment will ever be required again.

A recent online interview with an experienced cancer nurse — Richard Boyajian, RN, NP, Clinical Director from the Dana-Farber Brigham Cancer Center — describes this changing landscape.

Although many people tend to lump all experiences together under the label, “cancer,” indolent lymphomas are a very different animal. Everyone wants a treatment plan. Nobody wants a “waiting plan”:

“One of the most difficult things about follicular lymphoma is that it is often more of a chronic disease. You have to treat it like a different animal. If it's not aggressive we tell patients, ‘We'll follow you until it gets bad enough that we want to treat it.’ This approach is often called 'watch and wait,' which can be very emotionally and psychologically difficult for patients to understand and deal with because they don't have an action plan they have a waiting plan. One of the most important parts of survivorship for follicular lymphoma is making sure patients are able to cope with that type of an approach.”

A certain psychological strength is needed. A few of us, I suppose, demonstrate such strength from the beginning. A great many more of us gain it along the way, like a gym patron going through repeated rounds of exercise.

What it’s all about is learning how to live with the unknown:

“For me, one of the most important parts of follicular lymphoma survivorship is acknowledging that it can be very stressful psychologically upfront so the patient knows what to expect and knows that their feeling are normal.

Frequently, after their treatment, patients want to know, ‘When is it going to come back? Is it going to come back?’ Those are really difficult questions to answer because everyone is so individual. Trying to get people comfortable with the unknown is one of the challenges we face as health care professionals.”

Boyajian encourages us to look on indolent-lymphoma treatment not so much as striking a single, decisive blow as resetting a clock. Treatment typically doesn’t wipe it out, but merely pushes it back, after which it can be expected to return eventually:

“Patients should understand that there is a natural timeline for follicular lymphoma; but our goal is to reset the clock. If a patient has a poor timeline because they have an aggressive disease, that's an indication that more aggressive treatment is needed and will change the natural history of that timeline. Someone with an indolent disease and a longer timeline might have a watch-and-wait approach where we make sure the disease doesn't change and become more aggressive.

That's why it is important to discuss the emotional impact of 'watch and wait.' Someone that doesn't need treatment may have a poorer quality of life because they are constantly thinking about their disease and cannot really go on because they're so overwhelmed with it. We want patients to live a long time, but they also need to make sure their quality of life is good. These two things go hand in hand. If people aren't enjoying the life they have, whether it's long or short, that's very upsetting for me.”

Depression is a normal feature of the disease. For me, personally, this has been one of the most difficult learnings. To most people, depression seems an aberration, a disease in its own right that ought to be curable. Often it takes the form of a self-destructive feedback loop: you realize you’re feeling depressed, which makes you feel even more depressed.

Yet, we can also see depression as an indolent disease in and of itself. Or, maybe it’s simply the cancer viewed from another perspective — the mental manifestation of the disease.

Boyajian is realistic about this:

“It is normal to feel anxiety and depression after getting a follicular lymphoma diagnosis but anxiety and depression can cause people to make decisions that may not be in their best interest. We need to ensure that every patient diagnosed with any type of cancer knows it is okay to talk about their concerns and fears. Getting the right treatment for anxiety or depression should be considered a priority.”

There can be a tendency, after treatment begins, to put off other tests and treatments, as cancer becomes the all-consuming priority. I can recall, for example, wondering whether I should postpone going to the dentist, because if I were going to die anyway, what did it matter if I never got that cavity filled?

That’s a mistake, as Boyajian points out:

“Besides following blood counts and the size of your lymph nodes for infection, it is important to remain connected with your primary care doctor and get all of the necessary screenings. Patients should get the normal health screenings as part of the standard medical survivorship follow-up. If a patient has diabetes, heart disease or high blood pressure it is just as important to manage that as well as their cancer. Poorly controlled diabetes will cause more problems than slow growing follicular lymphoma and may also affect future treatment options. The healthier you are, the more options you have so a healthy diet, exercise and maintaining a good weight are very important.”

We survivors learn to take care of ourselves, through every season.