June 25, 2014 — Comfort In, Kvetch Out

A friend shared an article with me the other day that contains a piece of advice that’s so practical - so downright sensible - it seems incredible no one has thought it up sooner.

It comes from a newspaper article that’s about a year old. In a Los Angeles Times article, "How not to say the wrong thing," April 7, 2013, co-authors Susan Silk and Barry Goldman address the age-old question, “What do you say to somebody who’s sick?

To understand the advice, you have to conjure up a simple diagram composed of concentric circles with a dot in the middle. The dot is the sick person. The first circle around the sick person is the sick person’s closest relative — a spouse, a parent, a child. The next is other immediate family. Then comes extended family. After that, friends. Then, close co-workers. Then, people in the next office who nod hello to them at the water cooler. Keep drawing circles until you work down to the level of casual acquaintances.

The categories associated with one person may be a bit different than for another. Some people are closer to their best friends than to their family. It’s not so much the labels on the circles that are so brilliant, as what you do with them.

After you’ve plotted your own location on one of the circles, take a look at those who are closer to the patient than you. Then, turn around and observe those who are not so closely connected as you are.

The Comfort In, Kvetch Out rule is this: When you turn towards those who are closer to the patient than you, what you say should be words of comfort. When you turn towards those who are in a less intimate relationship than you, then you can feel free to kvetch — to complain about how bad your friend’s or relative’s illness makes you feel, or how it inconveniences you.

We all need to kvetch from time to time. The art is in deciding who we kvetch to. If our kvetching is directed outwards, that’s fine. If it’s inwards, it can be a burden to those who are already carrying more burdens than we are.

The most important person in the system — the patient — is allowed to kvetch 100% of the time,  no questions asked. As for the communications they receive from others, the goal is 100% comfort.

From the article:

“When you are talking to a person in a ring smaller than yours, someone closer to the center of the crisis, the goal is to help. Listening is often more helpful than talking. But if you're going to open your mouth, ask yourself if what you are about to say is likely to provide comfort and support. If it isn’t, don’t say it. Don’t, for example, give advice. People who are suffering from trauma don’t need advice. They need comfort and support. So say, ‘I’m sorry’ or ‘This must really be hard for you’ or ‘Can I bring you a pot roast?’ Don't say, ‘You should hear what happened to me’ or ‘Here’s what I would do if I were you.’ And don’t say, ‘This is really bringing me down.’

If you want to scream or cry or complain, if you want to tell someone how shocked you are or how icky you feel, or whine about how it reminds you of all the terrible things that have happened to you lately, that’s fine. It's a perfectly normal response. Just do it to someone in a bigger ring. You comfort people in the smaller rings. You kvetch to people in the larger rings.”

One important take-away from the article is that advice-giving is a variety of kvetching. You may think you’re helping the person in the smaller ring, but you’re not. Most of the time, advice-giving is more about meeting the needs of the advice-giver than it is about genuinely helping the advice-receiver.

Very likely, what the person in the smaller ring yearns to receive from you, far more than advice, is listening. Listening is one of the most important forms of comfort.

Comfort in. Kvetch out. Not a bad little rule, don’t you think?

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.

June 2, 2014 — Long-Term Survivorship

This excerpt from the online memoir of a follicular lymphoma survivor, Evelyn Lipori, mirrors my survivorship experience — of the journey from panic and fear to a deep assurance of hope. Evelyn is Director of Individual Giving for the Lymphoma Research Foundation.

There’s quite a difference, as Evelyn points out, between the days right after diagnosis...

“I was only 37 years old and the reality of a cancer diagnosis quickly set in. I became consumed with thoughts of dying, of leaving my husband with our two young children, of not being here for graduations and weddings. I was worried I would never see grandchildren.”

...and the relaxed and assured viewpoint of a veteran...

“Over the years, my perception of survivorship has undoubtedly evolved. In the early days, I was simply grateful to have ‘survived’ my diagnosis and subsequent treatments and still be alive. But today it means many things I never quite imagined.

For me survivorship means hope - finding hope through education and knowledge about my disease and giving hope to others by sharing my experience with newly diagnosed patients.

Survivorship means giving back. I've been involved with LRF in various capacities ever since my diagnosis - as an advocate, a volunteer, a board member, a donor, chapter president and most recently in my current role on the LRF staff as Director of Individual Giving.

Most importantly, survivorship means living life to the fullest despite the 'dark cloud' of a lymphoma diagnosis that can seem to follow you wherever you go. So much progress has been made and continues to be made in lymphoma research that there are now treatments becoming available that were barely an idea in someone's laboratory back in 1997. I live each day with the comfort of knowing there are many alternatives should I ever need treatment again.

In the meantime, I've seen my kids grow up, graduate from high school, college and graduate school. John and I just celebrated our 32nd wedding anniversary and each passing year brings me closer to seeing my children's weddings and the grandchildren I never dreamed I would be here to see.

Cancer survivor? You bet I am!"