Website Showing the Face of Members of the Lung Cancer Community

  Several years ago, Christine Dwyer learned that her close friend Brad, a 31 year-old never-smoker, had advanced lung cancer.  He died in late 2005, and she went on to develop cancergrief.com, a website that she hoped could help people like her, feasturing news and discussions about treatments, coping, and other information. 

   In recognition of November as Lung Cancer Awareness Month, Christine is posting stories of lung cancer patients, survivors, caregivers, family member and friends that portray the true faces of lung cancer.  Her goal is to help educate people about this disease and the need for more funding, research and to help eradicate the stigma that is so often attached to cancer, but especially lung cancer.

   Participate and help by showing that there are real faces of lung cancer and the people it impacts, not just hard statistics.

I-1000: Washington State’s Physician-Assisted Suicide/”Death with Dignity” Act

   I am very interested in the views of people here about an issue that my state will be voting on in a few week: Washington’s initiative I-1000, the Physician-Assisted Suicide Initiative, “Death with Dignity” if you are a supporter.  To the detractors, it establishes a potential for abuse that puts vulnerable people such as depressed or poor patients at risk.  For such a contentious issue, and one that was once something I thought a lot about, it hasn’t been something that I’ve spent much time on recently.  I’ll say that I’m not an expert, but I treat many patients who could avail themselves of this service, which would provide mentally competent patients with a terminal diagnosis and anticipated survival of 6 months or less access to lethal medications after several conversations and a waiting period of at least 15 days.  I’m very interested in what patients and caregivers think about this polarizing issue.

   On the one hand, it’s received support from a wide range of politicians (listed on this page), as well as newspapers such as the Seattle Times, the Seattle Post-Intelligencer, and many others in the state.  Tellingly, however, it is criticized by the Oregonian, the largest newspaper in Oregon, the only state that allows physician assisted suicide based on a similar initiative passed several years ago.  Although part of the criticism from the Oregonian is based on the breadth of the initiative in Washington, much of the concern is the fundamental discordance between the physician role as healer and the potential role in facilitating death, which is the primary reason that it is not supported by the Washington State Medical Association, as well as the American Medical Association.  Similar initiatives have failed in 14 other states over the past decade. 

   For those interested in reading more, the summary positions are available here for those in favor, and here for those against this initiative.

Read the rest of this entry »

Randy Pausch, Author of The Last Lecture, Died Yesterday

   For those of you who hadn’t heard yet, I’m saddened to report that Randy Pausch, computer science expert and inspirational exemplar for legions of people after confronting his diagnosis of pancreatic cancer with positivity, wisdom, and wit, died at his home yesterday. 

   I described his book and lecture in a prior post, but there’s a great deal of video and other information out there.   Diane Sawyer of ABCNews and Good Morning America met with him on a few occasions, and her coverage here provides an insightful and warm perspective on him, his wife, and his legacy.

   Dr. Pausch was a highly motivated and focused person throughout his life and was respected for his accomplishments before his diagnosis with pancreatic cancer.  It’s to his credit that what he’s done since has made a much greater impact and provided solace to many needing it. 

“Scanxiety”

Recently one of our readers wrote about her “scanxiety”, the anxiety and fear she feel whenever it is time to have another scan that has the potential to show growth or progression of her disease process. There is not a cancer patient I know of who has not suffered this kind of emotional distress at least once, and usually more often, when such a test is looming. It may be difficult to talk about this fear with loved ones, since most of the time they are either as scared and anxious as the patient is, or maybe in blissful denial, certain that things are going well for the patient. This is certainly a topic that comes up with some regularity in support groups, and there a variety of helpful hints that may emerge from the discussion.

First, recognize that the timing of the scan or test is important. If this is the first scan since the beginning of chemo, some 3-6 months away, the anxiety can be almost overwhelming. However, the first scan often shows some improvement, some shrinkage of the tumor. The first treatments, whether with radiation or chemotherapy or whatever, often has the greatest potential for a response. That‘s why we use the best treatment for the particular type of cancer first, assuming that we have already determined a “gold standard” treatment.

If this is a repeat test and the prior ones have continued to show response to the treatment, a person can feel relatively confident that this scan will show a good result as well. Of course, there is always a point that may come when a scan report may show that the treatment has stopped slowing the growth of the cancer, and there may be a small amount of progression of the disease. The most difficult thing for a person to handle is the uncertainty that comes when ever we test to see how well any treatment is working. Generally speaking, patients can go into a pattern of circular, almost obsessive thinking about what the scan results will be. This sort of thinking process creates even more anxiety as the thoughts keep recurring and we are unable to prevent them from taking over.

This is when I find it helpful to ask a patient two questions. The first one is, “Do you believe you can do anything about whatever the scan results will show?”. The second one is, “What do you believe is the worst possible thing that can happen to you if the scan results are less than positive?”. Almost to a person, patients will answer that they do they not believe they have any control over the test results! Again, nearly every patient will answer that the worst possible thing that can happen to them if the scan results are negative is that they will die! This is patently incorrect! Commonly, the worst thing that will happen is that the treatment will change; the physician will change chemotherapy drugs, or add a different drug or switch to a targeted drug in addition to what has already been tried, but very often, something new will be added to the chemo protocol. If you are a patient whose cancer has not been a good responder in the past, and you have already tried several different chemo protocols, the decision about what to try next may be a bit more problematic, but it still does not mean that there may be nothing left to try. Every year there are new drugs being added to the existing arsenal we have to treat every cancer. And even though a patient may not have responded well in the past, and there are statistics that show that each new drug has a worse chance of being successful than the preceding drugs, we sometimes we get a pleasant surprise. For any particular patient, the new protocol may be just the right one, providing a nice response.

So here we have a situation of such overwhelming anxiety and fear that patients are unable to control all of these negative thoughts and replace them with more helpful thoughts that would allow for better coping when frequent tests and scans are always in the future plans. To return to the first question, I often employ a coping mechanism I learned many years ago. First, I make certain that there really is nothing I can do to help myself in this situation, and allow me to feel more in control. Sometimes that means asking the physician for a small number of anti-anxiety medications, like 10-20 Lorazepam or Xanax. What is interesting is that most of the time I don’t even take them, but just knowing I have them if I need them is very helpful, and if sleep would otherwise be disturbed because of the anxiety, they may really help. Prayer or meditation is also very useful when these recurring thoughts keep coming, but sometimes they are so disruptive that you can’t really concentrate on keeping your mind focused enough to do that. The most helpful thing to me is that if I have looked at all of the activities that might be helpful and discarded them for one reason or another, and I know for sure that I have done the best I can do, but the anxiety is still terrible, there is only one thing left to do, and that is to let go of the fear and anxiety. Telling yourself to let go is to recognize and acknowledge our own helplessness in this circumstance. I know this is not easy to do, especially for people who need to be in control, but unfortunately it is a reality of the cancer experience. I doubt there is a physician around who would really tell any patient that they are in control of this disease; everyone is doing the best they can with the tools that are available to work with.

So, spending endless hours in circular thinking and high anxiety is to rob yourself of the most precious commodity we have; time! We talk a lot in cancer treatment about staying in the moment and living each moment, and the folks who are successful in practicing mindfulness on a daily basis are those who do actually recognize their own limits and work to overcome the irrational fears and anxieties. They ask themselves the questions that will help them to come to the best conclusion for themselves and work hard at truly living in the moment! These sleepless nights and worried daytime hours are robbing you of precious time to spend with family and friends. Keep telling yourself it isn’t worth it and work on all of the positive things in your life. Those scans and test reports will be what they are going to be no matter what you do. So please, work on making the changes you need to do: you will be so glad you did!

Please let me hear your comments.

Leah

Thoughts on “The Last Lecture”

  There’s a book that’s making the circuit in the world in general, but it’s probably especially relevant here.   The Last Lecture, by Dr. Randy Pausch with very helpful editing by Wall Street Journal writer Jeffrey Zaslow, is a book based on the lecture last September by Dr. Pausch, a computer scientist and virtual reality expert who is a tenured professor at Carnegie Mellon University in Pittsburgh, a major leader in this work.   The “Last Lecture” refers to a lecture series that is common at universities, in which professors are invited to give a major presentation on the key points they would impart as a last lecture, the culmination of their experience.  Dr. Pausch, though only 47 now, had already attained a stature that would lead him to be invited for such an honor.  But the amazing story is that he had been diagnosed with pancreatic cancer in 2006, while in his mid-40s and with three young children, and from there he underwent aggressive surgery (that makes lung surgery look easy) then chemo and radiation, but learned just weeks before he was scheduled to give his September 2o07 lecture that he had developed a recurrence, and therefore that he had an incurable disease.  He was told that he could probably expect about 3-6 good months, and as he told his audience at the lecture that day, a month into that estimate, “you do the math”.    Ironically, the title series had recently been changed from “The Last Lecture” to “Journeys” or some such ambiguity, and he opens by saying how disappointed he was with this change after “I finally nailed the venue”. 

   In fact, the lecture was recorded not for the world, but for a few people at Carnegie Mellon who would miss it that day.  It was posted on YouTube and other places, where people would watch a respected professor with terminal cancer give what would literally be his last lecture.  But he didn’t speak on computer science, or at least he did only tangentially.   Instead, he spoke to that 400 person audience about “Really Achieving Your Childhood Dreams”.  He used this goodbye to his “work family” (he was a clear workaholic, as befits someone who becomes a tenured professor around 40), but primarily to expound upon how he managed to achieve his own childhood dreams and, as importantly, enabled other people to achieve theirs.

   In truth, speaking about this lecture is kind of like reviewing mom’s apple pie: it almost seems like sacrilege to say that there was still more than enough about computer science and his academic achievements.   Overall, I think it was humanizing to see him as a whole person, and he readily notes that those close to him laugh about his canonization as “St. Randy”, since he clearly ruffled some feathers along the way.  Admittedly arrogant and brash, he doesn’t minimize the faults that come through the lecture and the pages of the book, but that just makes him real (one small chapter of the book is about being a “recovering jerk”). 

   His focus is on truly valuable lessons like tenacity (”brick walls aren’t there to stop you…they’re there to show you how badly you want things…they’re there to stop the other guys”), to tell the truth all the time, to accept well intended feedback even when it’s hard, risk taking, and team work.   His lecture and the book are peppered with colorful examples.   Although there is much about life lessons, some of this is in the context of goals of winning carnival stuffed animals or “being Captain Kirk”, not all high-mindedness (that’s a good thing).

   With his diagnosis of terminal cancer, it’s to his credit that his life’s focus changed to his family, and especially his young children:

 (beautiful family, it must be said)

In fact, after the incredible response he received after his actual lecture, he was reluctant to spend his limited time on a book.  Jeffrey Zaslow became friendly with him after driving from his home in Detroit to Pittsburgh to cover the lecture for his paper (story summarized here) and suggested that it would be a valuable tribute to the world and especially to his family and children the lessons he won’t be able to impart in the future.  Rather than take away from his time with family, Dr. Pausch used the time he spent biking to maximize his strength and overall constitution to speak on his cell to Mr. Zazlow, who edited these conversations and the content of his lecture into a 200 page book that was easily readable in a single sitting.  In fact, I must confess that I found the newspaper article and the book more enriching than the lecture itself, because the editing process really encapsulated all of the wisdom and thoughtful perspective, while highlighting him as a person with strengths and faults.  

    There’s more content, including a Diane Sawyer interview with him and his wife (in which they discuss with great compassion the struggle of facing his diagnosis with small children) on YouTube, and also plenty more on the website www.thelastlecture.com 

    Whether you’re fighting cancer or not, the struggle to make the most of your life, leaving a meaningful imprint by your work while also imparting who you are to your family, is something I and am sure many other people can relate to. 

    Please tell me some of your thoughts if you read or watched.  I’m going to go play with my kids. 

Survey on Experience of Living with Lung Cancer

Among the many problems with lung cancer that everyone in the lung cancer community experiences is that the field does not receive the attention and the resources it deserves.  And one of the leading reasons for this is the perception that there is less reason to support research to prevent or combat a disease that many people erroneously feel could be avoided by just not smoking.  I think this form of “blame the victim” is a coping mechanism other people use to feel that they have control over an uncontrollable situation, that if they assign causation and blame for a life-threatening problem, it couldn’t happen to them.  But the net result is that many people facing lung cancer not only have to deal with surgery, radiation, and/or chemo: they also need to deal with a stigma of lung cancer that doesn’t exist for victims of breast cancer or leukemia.    These perceptions are widely observed but really not well described or studied, and it’s only with greater attention to the unfair treatment of patients with lung cancer that the lung cancer community can address this problem actively and try to remedy it.  Toward that end, a graduate student in the School of Nursing at the University of Washington named Nancy Tennent, who previously worked in the research department of my own institution, has developed a survey to assess the patient’s experience of lung cancer, particularly focusing on issues like societal attitudes.  She is hoping to get input from people here who are actual patients with lung cancer, and the information will be completely anonymous: the survey is done online and will not collect names or any information about the computer or internet location of the responders.  This survey was approved after a thorough review by the Institutional Review Board at the University of Washington (trust me that this is a very protective and conservative group, as someone who has struggled to get research programs approved there), although the link to the survey notes that it is still under review (the wording needs to be updated).

    For those of you who are interested in helping her with this project, which I hope she’ll present and publish in order to shine a light on the social challenges that compound the medical problems of living with lung cancer, you can find the link HERE.

Ups and Downs of Medicare Part D

by Leah deRoulet, MSW

After covering the highlights of Medicare parts A, B, and C in the last post, we’ll now move to Part D, the plan that provides outpatient prescription drug coverage. If one can afford it, it is usually best to purchase the plan that covers most of the medications you are taking, and this might be available through the Medigap supplemental plan you choose. Then you have one plan that covers both Parts B and D. In cases where this is not affordable, and you do not have prescriptions for many oral drugs, you might be able to get by with an inexpensive Part D supplement plan. I have one patient who pays $25.50 per month for her plan, as well as the co-pays and the deductibles required for the plan. But this is a very reasonable plan. I have other patients who are paying $95.00 or more for their plans, but some of these more expensive plans also covered the dreaded “donut hole“, or coverage gap that occurs after a certain amount of money is spent by Medicare to cover the cost of the drugs. Although there may be some differences in charges relative as to how much money should be spent, for the most part there are 4 areas of Part D that must be traversed. The first one is the initial deductible. The second one is the area where Medicare pays its share of the costs except for the co-pay, which is 25% of the cost of the drugs. The third area is the coverage gap or donut hole, where Medicare pays absolutely nothing until the patient accrues a total amount of out of pocket spending, which can be as low as $3,800.00, including the deductibles and the co-pays and cost of the drugs while the patient is in the donut hole. At the point at which the out of pocket spending meets the necessary monetary criteria (in 2008, that figure is $4,050.00), Medicare then picks up all of the cost of the drugs at a 95% payment rate, and the patient pays a minimal co-pay, usually no greater than $5-10. This is returned to zero again at the beginning of every year, when the plan starts fresh for the next year, and the deductible (and donut hole) kicks in again. Read the rest of this entry »

The ABCs of Medicare

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 Read the rest of this entry »

Cancer and a “Normal Life”: The Concept of a Gratitude Journal, by Leah

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

Coping with the “Roller Coaster” Emotions of the Cancer Experience, by 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. Read the rest of this entry »