by Leah deRoulet, MSW

Recently I’ve had a few patients who wanted to come in and discuss their confusion about all of the Medicare plans since they had to make decisions whether or not to actually accept Medicare as their health insurance plan or stay on the plan they currently had. Patients who have been granted Social Security Disability and are on it for 24 months receive a letter from the Social Security Administration informing them that will be eligible for Medicare on a certain date, and that they have approximately 30 days from the date of the letter to let the government know if they plan to accept Medicare, and what parts of Medicare they wish to enroll in. So, although the Prescription Drug coverage, Part D is the one that confuses people the most, all of the other plans except Part A are still confusing. Here’s a quick run through of Medicare, and then we will talk primarily about Part D in the next post Continue reading →

Here’s more on methods for coping with cancer, by Leah de Roulet:

Hello again! Last time I talked about ways to cope with the roller coaster of cancer, and I was reminded of one I left out when I read a column recently in the Seattle Post-Intelligencer, or PI, one of our major newspapers here. This one is about keeping a Gratitude Journal; although it really doesn’t have to be more than 2 or 3 things you can find to be grateful about each and every day. As I read this article, I thought it would be wonderful to pass it along, and I hope you get as much out of it as I did. I really wish I had written it myself! Our social work team is passing copies of this out in our support groups. It is entitled “Forget normal; take life as it is“, by PI columnist Chi-Dooh LI, published in late December and available here. I have deleted a few paragraphs of the beginning of the article, but here are the highlights:

Here’s what I wanted – and didn’t get – for Christmas this year: to remake the month of December. To turn back the clock. To have things turn out differently. For my friend to walk out of the hospital alive and healthy. For drug addiction to go to hell instead of messing with a precious human being with a great mind.

…During dark moments this month I have pondered why life that can be so sweet must inevitably be jarred and marred by such heartache. Why is one inseparable from the other? Why do tears inevitably follow laughter? Why does sorrow always stalk joy?

Can’t we just order up “life” with no pain, please, like we do Thai food, with zero to five stars spice rating? Others can have their lives spiced just as they wish. As for me, emotional pain tends to shut me down. Maybe one-star pain is OK, but I much prefer none at all.

I found the answer to my questions, while mentally exhausted and emotionally numb, in an unlikely place-sitting in front of the television watching a rerun of “Tombstone” an entertaining Hollywood rendition of Wyatt Earp & Co.

Late in the film, a dying Doc Holliday asks Earp what he is searching for, and Wyatt responds, “Just to live a normal life”. To which Holliday responds, in a line memorably delivered by Val Kilmer: “There is no normal life, Wyatt. There’s just life. You live it.”

Our definitions of what might be a “normal life” will likely range all over the landscape. Mine naively presupposes a life with minimal pain.

On a broader scale, was 40 years of living under the threat of thermonuclear warfare during the Cold War “normal” life? Or would the term better describe the hiatus between 1989, when the Iron Curtain came down, and Sept.11, 2001, when our existence was abruptly threatened by terrorists who want to eradicate our way of life and our ways of thinking?

How would victims of floods and other natural disasters define “normal” life? Surely they would find it hard to accept that losing your home and even loved ones is normalcy.

That’s why the wisdom of Doc Holliday’s pronouncement bears remembering. Life will always be a cornucopia of the unpredictable. Our attempts to define it or put it into a neat or manageable box will do us as much good as trying to bottle the air we breathe.

Forget about normal. Live life, such as it is, with all it brings-the very bad, the wonderfully good, the repulsively ugly, and the astonishingly beautiful!

(Leah now) When I think about what I am grateful for at the end of the day, it is usually not anything very fancy or complicated, it may just be something astonishingly beautiful. As an example, here in Seattle, it is so rainy, cloudy, and overcast, that most of the time we cannot even see out most famous landmark, Mount Rainier. This past week, it was very cold and very clear, and almost every day, the Mountain was “out”, as we say when it is visible in all its majesty. I am always grateful when I can see the Mountain; indeed, I can hardly tear my eyes away from it even when I am driving. I am grateful for the birds that come to feast at my bird feeder, for the friends who call to say they miss me if I have been inattentive, and for the brilliant full moon last night. These are just items for my Gratitude Journal; I know I could come up with a lot more if I tried. How many can you come up with each day? Nothing fancy, 3 or 4 will do, and remember; just pieces of what makes up our lives if we pay attention!

So here’s to life-just life in 2008!

More to come,

Leah

Hello again! After my first column Lola’s daughter asked me to discuss what is helpful in negotiating the emotional roller coaster she and her mother, and every other cancer patient and loved one experiences during the cancer journey. I thought it was a question that is very relevant to any reader of this website, so here goes!

First and foremost, acknowledge that these ups and downs are very normal. Although denial can be functional and helpful, it is impossible to remain in denial when one is visiting cancer treatment centers frequently; experiencing the side effects of treatment, feeling ill, feeling exhausted most of the time, being anxious when test results are due, and constantly being reminded that one is dealing with the big “C”. So, I think the question really is, how can we keep the negative emotions to a minimum so that we are not overwhelmed by them?

Some suggestions:

1. Rather than allowing random worrisome thoughts to keep circling through your mind all day, play Scarlett O’Hara. No, I don’t mean think about it tomorrow, but try to designate a certain time when you might be able to sit down and actually focus on those thoughts. This is a technique that can work well for many people. By pushing the negative thoughts out of your mind each time they appear and telling yourself that you will think about them, say, at 4:00PM and then doing exactly that, your ability to control the nagging thoughts will increase and you will find that the time you spend on them will decrease. When you are thinking about them, prepare some self-talk that is both accurate and supportive. Statements like: “We have a great medical team, doing everything they can!” “The treatment is state of the art, no matter where we went it couldn’t be better! ” ” Its’ OK to feel scared and worried once in a while, but we can handle this!” “Nothing so far has been as bad as we thought it would be!” So many patients tell me that the unknown is always worse than the known. Remember that what you tell yourself must be true: you cannot lie to yourself — your brain will simply reject the statement, and the technique will not work for you.

2. Join a cancer support group. I know, I know, you’re not a groupie kind of person, but giving it a try may surprise you. We have in our community (Seattle) several wonderful cancer support organizations, Gilda’s Club, and Cancer Lifeline, and Team Survivor Northwest, a combination group/sports cancer organization, and they all offer many groups that are bound to appeal one way or the other. At most of these organizations, a full range of classes that allow other forms of connecting with each other are offered. Yoga, Mindfullness Meditation, Pilates, Tai Chi, QI Gong, are only a few of the classes offered in our community. All are “soft” classes, meant for people on treatment who are easily fatigued. Continue reading →

Today’s post comes from Leah de Roulet, a great oncology social worker I introduced in my last post. She has kindly agreed to share some of her insights about coping with cancer as well as practical issues of navigating financial and insurance issues from her decades of social work experience. One of the founding directors of the nonprofit GRACE, I hope that Leah will be able to find the time to participate regularly by providing posts and participating in forum conversations about the large part of oncology that doesn’t deal with clinical trials and hard evidence. Here is her first post, on a timely topic on New Year’s Day, when we focus on beginnings.

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Cancer is a terrifying disease. While a number of other afflictions can be more assuredly fatal, malignant disease occupies a special place in our hearts and our minds. Many of us have memories of friends or loved ones who have succumbed to cancer in ways that can often be so painful, humbling and humiliating that no other illness strikes the kind of fear into us that this disease does. Such an illness, played out over an extended period of time, affects not only the patient but everyone close to the patient.

From that first enormously overwhelming expression of fear, panic, or emotional shutdown, other feelings come and go with disconcerting regularity; so many ups-and-downs that those of us who work with cancer patients think of it as the emotional roller coaster everyone rides during the cancer experience. There may be anger, depression, anxiety, a sense of being helpless, powerless, out of control, extreme feelings of vulnerability, feelings of betrayal by their own body, or of unfairness, as in “Why me?” Above all, the overriding emotion is fear: fear of treatment, fear of loss of control, and fear of death.

Always, there is grief – grief for the loss of the sense of one’s self as a healthy person, a sense most of us carry with us and seldom acknowledge until something goes wrong with our health, and that image of ourselves is destroyed. Suddenly, we are very vulnerable! This form of grief is almost never acknowledged; we are conditioned by our culture to hang tough, be strong, and certainly, no self-pity is condoned. Still, the sadness is there, and it is hard to give voice to the feelings, rarely identified as grief, for the simple fact of having cancer. Yet, think of the loss, no longer can the patient say, “I am a healthy person”, but rather, “I am a person with cancer”. Family members and friends will find it helpful to understand the feelings, emotions, and psychological tasks of the patient recently diagnosed with breast cancer, and recognize their own feelings in these descriptions. A famous author, James Baldwin, once said, “Not everything that is faced can be changed. But nothing can be changed until it is faced.” Continue reading →