To all of you who know someone who is fighting this dreadful disease, know someone who has passed on, or may even be fighting this battle yourself... I hope you find some comfort here at this site, whether it be an article, a link, or even a picture. My heart is with you, for I have lost my dear sister Janel who was only 42 at her passing October 26th, 2009. This young woman never drank alcohol or smoked a day in her life. She was a third degree brown belt in karate and only lived for three days following her diagnosis. I encourage everyone to support research and funding for this silent killer.

Wednesday, December 15, 2010

Missing molecules hold promise of therapy for pancreatic cancer

Lost microRNAs put brakes on tumors

By determining what goes missing in human cells when the gene that is most commonly mutated in pancreatic cancer gets turned on, Johns Hopkins scientists have discovered a potential strategy for therapy.

The production of a particular cluster of genetic snippets known as microRNAs is dramatically reduced in human pancreatic tumor cells compared to healthy tissue, the researchers report in a study published Dec. 15 in Genes and Development. When the team restored this tiny regulator, called miR-143/145, back to normal levels in human pancreatic cancer cells, those cells lost their ability to form tumors.
“Our finding that these specific microRNAs are downstream of the most important oncogene in pancreatic cancer sets the stage for developing methods to deliver them to tumors,” says Josh Mendell, M.D., Ph.D., an associate professor in the McKusick-Nathans Institute of Genetic Medicine, Johns Hopkins University School of Medicine, and an early career scientist of the Howard Hughes Medical Institute. “When we restore microRNAs to cancer cells in which their levels are repressed, the cells no longer are tumorigenic. We have every reason to believe that the efficient delivery of miR-143/145, if achievable, would be therapeutically beneficial.”
The team focused its investigation on KRAS, a member of the important RAS family of oncogenes that is mutated in almost all cases of the most common form of pancreatic cancer.
The researchers conducted their studies in a multitude of model systems A— human cells growing in culture as well as those harvested directly from tumors, and also in mice and zebrafish. First, using cell lines derived from pancreatic tumors and growing in culture, they added gene products such as mutant KRAS and an inhibitor of mutant KRAS, and then measured the microRNA responses. Next, they conducted the same experiments using cells from patients’ pancreatic tumors. Finally, they looked at pancreatic tissue from mice and zebrafish to see what happened when KRAS was activated.
Every time, the team noted the same robust findings. When KRAS was activated, the microRNA cluster miR-143/145 was powerfully repressed, to a fraction of the levels in normal, non-cancerous cells. Restoring the expression of miR-143/145 back to the level of normal cells was sufficient to confer “a very striking change in behavior of those cells,” Mendell says. When human pancreatic cancer cells with low microRNA levels were injected into mice, they formed tumors within 30 days. However, when the team restored the levels of microRNAs to the levels of normal cells and injected them into mice, tumors failed to form.
“Our findings showed that repression of the miR-143/145 microRNA cluster is a very important component of the tumor-promoting cellular program that is activated when KRAS is mutated in cancer cells,” says Oliver Kent, a postdoctoral fellow in the Mendell laboratory and first author on the paper.
At some point in the process of a normal cell evolving into a tumor cell, it loses microRNAs. When the KRAS gene is mutated A— a common event in pancreatic cancer A— it somehow purges cells of miR-143/145, the cluster of microRNAs that normally put the brakes on tumorigenesis.
“It is likely that some microRNAs will have very broad antitumorigenic effects in many different types of cancers,” says Mendell, whose lab is building animal models to investigate how different microRNAs participate in different tumor types. “In fact, there is already evidence that miR-143/145 can suppress other types of tumors such as colon and prostate cancer. On the other hand, the effects of some microRNAs will likely be very tumor-specific.”
Merely 22 nucleotides in length, microRNAs are enigmatic bits of genetic material that, despite being pint-sized, apparently are mighty. This field of study is less than a decade old; scientists still don’t have a good grasp on the fundamental role of microRNAs in normal biology.
“We need a better understanding of their basic functions to more fully understand how microRNAs participate in diseases,” Mendell says.
Having studied microRNAs in the context of several types of cancer, Mendell says delivery remains a major issue for nucleic acid-based therapies.
“There is a lot of work going on to develop ways to deliver microRNAs to different tissue sites,” Mendell says. “I’m optimistic that the liver and even the pancreas will become accessible to these types of therapies and benefit from them.”
In addition to Joshua Mendell and Oliver Kent, authors of the paper are Raghu R. Chivukula, Michael Mullendore, Erik A. Wentzel, Georg Feldmann, Kwang H. Lee, Shu Liu, Steven D. Leach and Anirban Maitra, all of Johns Hopkins.
The research was supported by the Howard Hughes Medical Institute, the Lustgarten Foundation for Pancreatic Research, the Sol Goldman Center for Pancreatic Cancer Research, the Michael Rolfe Foundation for Pancreatic Research and the National Institutes of Health.
On the Web:
Joshua Mendell discusses microRNA therapy for pancreatic cancer:

Tuesday, December 14, 2010

Small Advances Against Pancreatic Cancer

Rarely is it said that someone is lucky to have had cancer. But Justice Ruth Bader Ginsburg of the Supreme Court might be one such person.
 Mary Altaffer/Associated Press
SURVIVOR Justice Ruth Bader Ginsburg at New York University in April.

Justice Ginsburg was treated successfully for colon cancer in 1999 and is examined each year at the National Institutes of Health, where in January 2009 a routine CT scan revealed a very small cancer in the center of her pancreas.
While the life expectancy for most people found to have pancreatic cancer is usually a year or less, Justice Ginsburg has apparently been well after she recovered from surgery to remove the tumor, about the smallest that can be detected by a CT scan — one centimeter, or less than half an inch, wide.
A Challenging Disease
Pancreatic cancer has proved to be one of the most challenging malignant diseases, the 11th-most-common cause of cancer but the fourth-leading cause of cancer deaths. It affects a life-sustaining organ that sits atop the stomach in the center of the abdomen, where cancer can develop and spread before it produces recognizable symptoms.
The disease is detected and treated at a potentially curable stage in fewer than 20 percent of patients. For that reason, its overall five-year survival rate is less than 5 percent.
Pancreatic cancer will be diagnosed in about 42,000 people this year in the United States; some 35,000 people will die of it. It is primarily a disease of older people, with 90 percent of cases occurring in those over 55 and 80 percent in those over 65.
The disease became increasingly common in the last half century as cigarette smoking rose in popularity. Toxic chemicals in cigarette smoke and smokeless tobacco are thought to cause a gradual accumulation of gene mutations that allow cancer cells to form and spread rapidly; users have two to three times the risk of developing pancreatic cancer. Only now has a slight decline in incidence begun, thanks to the recent drop in smoking rates.
Other risk factors include obesity, Type 2 diabetes and lack of physical exercise, as well as occupational exposure to certain pesticides, dyes and chemicals used in metal refining. Less well-defined risks include chronic pancreatitis, cirrhosis of the liver, gallbladder removal, heavy alcohol consumption, a diet high in fat and cholesterol and, possibly, infection with the hepatitis B virus.
Men and women are equally at risk, although there are somewhat more cases among men, probably because more men smoked. The disease is also more common among African-Americans than whites, partly because black men have higher rates of smoking and diabetes, and black women higher rates of obesity.
A Genetic Component
Five to 10 percent of pancreatic cancer patients have a family history of the disease and are presumed to carry mutations that impair their body’s ability to repair damage to DNA. Several such mutations have been identified and linked to an increased risk of developing pancreatic cancer. In families where four or more members have had the disease, the risk to others in the family can be as high as 57 times that of people with no such family history, Dr. Manuel Hidalgo of Johns Hopkins University School of Medicine reported in April in The New England Journal of Medicine.
In a rare hereditary example, researchers led by Dr. Teresa A. Brentnall of the University of Washington School of Medicine described a family in which nine blood relatives had died of pancreatic cancer, some at young ages. Through detailed molecular detective work, they identified a mutation in a gene called Palladin in all those with cancer or precancer of the pancreas that was lacking in other family members. A still-healthy relative with this mutation chose to have his pancreas removed when it was found to harbor precancerous changes, and he has remained cancer-free for more than 14 years.
In an interview, Dr. Brentnall said that unraveling how the Palladin mutation works helped explain why this cancer is usually so deadly. “Pancreatic cancer cells are surrounded by a dense layer of fibroblasts,” she said, adding that in nonfamilial pancreatic cancer, the Palladin protein “makes the fibroblasts grow little feet filled with poisonous enzymes that create holes through which the cancer cells can escape and invade blood vessels very early in the disease, before the tumor is of significant size.”
Thus, the cancer is typically metastatic and incurable by the time it is diagnosed.
Adding to the problem of early diagnosis is the lack of a reliable screening test and the vagueness of early symptoms, if any. Without a family history that might prompt a doctor to suspect pancreatic cancer, patients are often first checked for problems like chronic reflux, gallbladder disease and bowel disorders.
For those with a family history of pancreatic cancer, Dr. Brentnall and other experts at leading medical centers now offer screening tests, including an endoscopic ultrasound exam, to look for abnormalities in the pancreas that may herald precancerous changes. But such exams are not cost-effective screening tools for the general population.
As with patients with the Palladin mutation, those on the verge of developing cancer are offered surgery to remove the pancreas, which results in diabetes and a lifetime dependence on daily insulin injections.
Dr. Eileen M. O’Reilly, a pancreatic cancer expert at Memorial Sloan-Kettering Cancer Center in New York, says there are six or seven known genetic factors involved in pancreatic cancer, including the BRCA1 and BRCA2 mutations more commonly associated with an increased risk of cancers of the breast, ovary, colon and prostate. Screening might also be considered in families with such traits, she said, as well as in the much larger number of families, like the family of former President Jimmy Carter, in which the genetic link is not known. Mr. Carter’s father, mother, two sisters and brother were afflicted.
A Hint of Progress
Dr. James L. Abbruzzese of the M. D. Anderson Cancer Center in Houston said some progress had been made in treating the disease. Radical surgery, called the Whipple operation, remains the mainstay of therapy, but only a small minority of patients — whose cancers have not yet invaded surrounding blood vessels — have traditionally been eligible for surgery.
Now, he explained, 10 to 20 percent more patients can undergo surgery after receiving treatment with radiation and chemotherapy to reduce the extent of disease, enabling the surgeon to remove the cancer and be sure the tissue around it is cancer-free.
However, Dr. Abbruzzese said, “many still have lymph node involvement” that leads to eventual spread of the disease. “We still need to identify better systemic therapies” to attack these escaping cancer cells.
“The median survival for surgical patients is two to three years, with maybe 10 to 15 percent who live longer,” he said. “It’s not a home run yet.”

Sunday, December 12, 2010

Ideas for a Time When Someone You Love Is Dying

     Someone you love is dying. Someone who has been as lively as you, is now losing their liveliness, or they're about to. It hardly seems possible. More than that, it hurts. It hurts to see them go through what they're going through. It hurts that you cannot protect them, that you cannot change their outcome. It hurts to feel all that you feel. It hurts to realize this is not the only death you'll ever face.
     Someone you love is dying and it feels as if a part of you is dying too. It's not easy to think about what all this means. What will life be like without them? What will happen to you in the future? What will become of your relationship? Those are only some of your questions. You're probably also wondering about this period just ahead of you. What will you say to that person? What will you talk about? What should you not talk about? How should you act? What can you do that will best help them? And how can you best help yourself?
     I've written this to assist you in finding the answers you seek. I've made a few assumptions along the way. I've assumed you're close to the one who's dying--they're your spouse or lover, your parent or sibling or child, your close friend or trusted colleague. If your relationship is more distant, some of the specific ideas presented here may not ring true for you. I believe the basic twelve principles, however, are universal.
This will be a time of testing unlike any you've known. It can be extremely stressful when someone you love is dying. Depending on who they are, who you are, and what the situation is, the stress can seem overwhelming. Not only are you about to lose an important relationship, but you're probably being forced to make major changes in your life. Change does not come easy. Unwanted change is even harder to accept. And a change which threatens your sense of well-being is the most difficult of all. It would not be surprising, then, if this were one of the most stress-filled times you've ever known.
In addition to dealing with all your emotions, you may be facing a host of disruptions in your daily life. You may be responsible for extensive caregiving duties, either ones you've chosen or ones you've been handed. Doctor appointments, lab tests, hospital visits, and medical emergencies may devour your time. Day-to-day caregiving rituals may consume your thoughts and sap your energy. Financial matters may burden you or even frighten you. Decisions about the future may hang heavy.
     Other responsibilities also vie for your attention. You may have a career to juggle, other loved ones to watch over, important commitments to fulfill. Your family life may be altered, if not fractured. You'll probably have less leisure time, less personal privacy. Friends may pull back from you out of their discomfort of not knowing what to say or do.
     What is happening to the one you love may cause you pain. Their disease may make them uncomfortable. Their treatments may make them sick. Their dying may make them very sad. You may witness changes in them that are hard to accept, or you may experience changes in your relationship that concern you, or hurt you, or mystify you.
It's no wonder that caring for someone who's dying is one of the most stress-producing jobs there is, even for people who are trained in this work. And if it so easily affects those with experience and expertise, why should it not affect you? You're new at this. And this is not just a patient you're dealing with--it's someone who has worked their way into your heart.
     Your situation should not be downplayed. But neither should it be painted as impossible. Others have done what you are now called upon to do--many others. And while you may wonder if you have what it takes to do what you must do, those who have done this before you have left a message: "It's hard, but you can do it."
     Three suggestions may help you through this time.  Learn all you can. Find out about your loved one's disease, prognosis, and treatment. Learn how to provide care, manage stress, and develop efficiency. Ask questions, read articles and books, network with others. The more you know about what you're facing, the better you can face it.
Go easy on yourself. Give yourself time to adjust to all the changes. Pace yourself daily. Be lenient in your self-expectations. The more accepting you are of yourself, the more tolerant you'll be of those around you, including the one who's so ill.
Don't forget: this is only temporary. It may seem that this crisis will never end, or that life will always be sad, or that you'll be forever hurt by what's happening. Such thoughts are understandable. But rest assured: the distress you feel will one day subside. Life's joy can return. You'll be shaped and changed by what you're going through, yet the changes don't have to be only negative. You can grow from this experience. You may not want to read that right now, but it's true.
     If nothing else, remember this: You've known times of testing before, and you've survived them. You can yet again. For the moment draw upon the strength and the example of those who have persevered before you. Take their words to heart: "Yes, it's hard, but you can do it. I know you can."
     The dying person will be as they've always been, only more so.
When someone is told they have only limited time to live, they respond in their own unique way. Some people become visibly upset and others appear stoic. Some act astonished and others take it in stride, as if they've known all along. There are no prescriptions for how people will react when they learn they're dying, but there are some general rules.
     As a rule, the kind of person they've been before is the kind of person they'll be now.
The fact that something has happened and someone is now dying does not change who they are. They do not automatically become wiser or kinder or braver. They simply become more themselves. Generally, if they were serious before, they'll be serious now. If they've been lighthearted, they'll probably still have a sparkle about them, at least some of the time. Quiet people will usually not talk a lot more, grouchy people will not complain much less, and affectionate people will not give up their loving ways.
What dying people may do is emphasize certain aspects of who they've been all along. Realizing this is a time unlike any other, and knowing it will not come again, they may concentrate on certain pursuits or call upon certain characteristics, letting others fall away. You may have the impression they're becoming more who they're meant to be.
As a rule, dying people prefer to live fully as long as they're able and to be treated as very much alive.
     There's a tendency to treat dying people differently. Voices are often lowered. People's faces may appear overly somber or they may take on a false cheeriness. Topics of conversation become more limited and some things are no longer talked about at all. As a result, the dying person may feel they're being pushed to one side, or they're being treated with pity, or they're being handled like a child.
     Not only is the dying person no different than they used to be, but in the most essential way, they are no different than you are today. They're your equal in every sense. They're as full of life as you are. They're every bit as human and maybe even more human. So they may bristle if you treat them as less than they are. They don't want your pity; they want your compassion. They don't want you to pat them on the head; they want you to go with them hand-in-hand just as far as you can.  As a rule, rules don't always hold.
     While most people don't experience personality conversions as they prepare to die, some do. Some decide to live the time that's left in radically different ways, and they give up old lifestyles for new ones. Some become obviously freer and others become clearly happier. Some grow up a great deal in a short period of time and a few, unlikely as it may seem, actually blossom. It happens.
     It will help everyone if you can go into this experience with as few preconceptions as possible about what dying people are like. Just expect the one you love to live as fully as they want for as long as they're able. Expect them to know joy as well as sorrow, to feel promise as well as pain, to laugh as well as cry. Expect them to teach you what you need to know. Mostly, just expect them to live until they die. Then let them do precisely that.
The one who's dying needs you to reach out.
     Those who know they're dying may hesitate to voice their deeper thoughts and feelings. They're often afraid of upsetting people around them. They're not sure how much others are ready for. It's not unusual for caregivers to behave similarly, tiptoeing carefully through conversations, steering clear of any topics that might seem disturbing. This can also be a way of protecting oneself. Whatever the reason, the result is the same: the dying person can come to feel isolated and lonely. So can you. But that doesn't have to be the case. You can reach out and connect.
     Connect by talking. Speak to the one you care for as an equal, person to person, face to face. Say what you think. Express what you feel. If the dying person is slow to open up, don't push them. Just let them know you're ready to move to a deeper level whenever they are. If tears come, let them to be. They're a sign that you care, an indication you wish this wasn't happening. Would you want the one you're with to think otherwise? So be honest with them. Talk simply and straightforwardly. Avoid secrets. Speak when the time is right and stop when the moment has passed. Draw the other person out bit by bit. Allow yourself to be drawn out too. Make this a time when you truly meet.
     Connect by listening. The one who's dying may have much to say--feelings to explore, questions to ask, ideas to leave behind, experiences to sum up. Your patient, attentive ear is one of the greatest gifts you can offer. Real listening takes work. The dying person's thoughts can be complicated and confusing as they spill out. Their emotions can be forceful and yet elusive. Answers may not be easy to come by. Yet you will perform a wonderful service by listening carefully to what the other person has to say, without interrupting, without judging, and without shying away. These can be sacred times you'll both remember long afterwards.
     Connect by encouraging memories. Often a dying person wants to make sense of the time they've had on earth. They want to feel their life has mattered and their influence will not be forgotten. You can play a critical role by treating their memories as important and their reflections on life as valuable. Leaf through scrapbooks and old letters with them. Look at pictures, sort through mementos, tell and re-tell meaningful stories. As you do this, you're each beginning to say your goodbyes. Saying them this way, gradually and lovingly, can help you both.
     Connect by touching. People who are dying want to know you're with them in as many ways as possible. No way is more direct than physical touch. If it's a comfort to them, hold their hand or touch their arm or shoulder or head. Stroke them, massage them, hug them. Your nonverbal communication can say as much as your verbal, or even more. Don't forget that touch and hearing are the two senses a person retains longest. Even when they cannot speak, they can be spoken to with a sound or a caress.
     Connect by just being present. Sometimes the most thoughtful way to reach out to a dying person is by not saying or doing anything. By your consistent return you communicate "I will not desert you." By sitting or working quietly in the same room with them, you communicate "I enjoy being with you." By staying beside them when they need you, your message is clear: "I am right here. I care."
     The one who is dying wants to know they're not alone. It's up to you to tell them in as many ways as you can.

By James E. Miller

Friday, December 10, 2010

Pancreatic Cancer Grows More Slowly Than Thought

Researchers Say Study Highlights Importance of Finding Ways to Screen for Pancreatic Cancer

By Salynn Boyles
WebMD Health News

Reviewed by Laura J. Martin, MD

Oct. 27, 2010 -- Pancreatic cancer is among the most lethal malignancies, with fewer than 5% of patients still alive five years after diagnosis.

It has long been suspected the disease is so deadly because it grows so quickly, but surprising new research finds the opposite to be true.

The investigation found that pancreatic cancer develops and spreads much more slowly than has been thought, with the timeline from when it first forms to when it kills spanning two decades or more, says Christine Iacobuzio-Donahue, MD, PhD, of Baltimore's Johns Hopkins Sol Goldman Pancreatic Cancer Research Center.

That means effective early detection strategies could have a major impact on outcomes, transforming a highly fatal disease into a largely treatable or sometimes preventable one like colon cancer, she adds.

The research appears in the Oct. 28 issue of the journal Nature.

"Based on this research there is reason to be very optimistic about how we will approach pancreatic cancer in the future," Iacobuzio-Donahue tells WebMD. "I really do believe we will make great strides in curing people with this disease."

Slow Growth of Pancreatic Cancer
It's estimated that about 43,000 new cases of pancreatic cancer will be diagnosed in 2010 in the U.S. and about 37,000 people will die of the disease, according to the National Cancer Institute.

The vast majority of patients are diagnosed after their cancer has spread to distant organs. Very few patients show sustained responses to treatments such as surgery, chemotherapy, or radiation.

A major focus of the Hopkins research has been to determine whether this is a result of rapid spread of the disease or late detection.

By analyzing tissue samples taken from seven patients immediately after their deaths from pancreatic cancer, the researchers identified distinct subclones of cancer cells present in primary tumors years before the cancer spread to other parts of the body.

Using a mathematical model, they estimated that it takes on average about 20 years from the beginning of the tumor process to death from pancreatic cancer.

Iacobuzio-Donahue says the finding shows the importance of efforts to find effective screening strategies to detect pancreatic cancer in the years before symptoms occur.

"The thinking has been that pancreatic cancer is so aggressive there isn't much that can be done about it, but there is a lot that we can do even now," she says.

Importance of Early Detection
James Abbruzzese, MD, who chairs the GI Medical Oncology department at the University of Texas M.D. Anderson Cancer Center, is one of many researchers across the country searching for better ways to detect pancreatic cancer early.

He says the newly published research speaks to the urgency of these efforts.

"This makes it even more clear that the focus needs to continue to be on early detection strategies," he says.

Between 5% and 10% of patients have a family history of the pancreatic cancer. Abbruzzese says researchers have learned a great deal in the last few years about the genetic influences on the disease and the impact of lifestyle factors such as smoking, obesity, and type 2 diabetes.

Imaging techniques such as MRI and ultrasound are already being used to screen patients with a family history of the disease.

"I think it is realistic to believe that we will have interventions to reduce the burden of pancreatic cancer within the next 10 years," he says.

SOURCES: Campbell, P.J. Nature, Oct. 28, 2010; vol 467: pp 1109-1113.National Cancer Institute.Christine Iacobuzio-Donahue, MD, PhD, department of pathology and oncology, Johns Hopkins Medical Institutions, Baltimore.James Abbruzzese, MD, chair, gastrointestinal medical oncology, University of Texas M.D. Anderson Cancer Center, Houston.News release, Johns Hopkins Medical Institutions.

©2010 WebMD, LLC. All Rights Reserved.

Thursday, December 9, 2010


Cancer, the dreaded "C" word. It has become such an epidemic in our society that people are loath to even mention its name. Cancer is a disease that can affect many different parts of the body. Some of these diseases are more serious than others. It is not only the disease that is painful but also the many way of treating it. Radiation treatments may kill the cancer but are also dangerous for the body. Chemotherapy comes with many side affects such as hair loss and severe nausea. The many faces of this disease challenge an individual to show their fighting spirit and will to live.

Poem Source: Cancer Poems - Poems about Cancer

Hospice Article

A Dying Person’s Guide To Dying by Roger C. Bone, M.D.
By thinking ahead about what could happen - and about how you will deal with problems if they do happen, you can create a better life and a better quality of life for yourself and for the people who love and care about you. What I have to say is for the person who, like myself, is dying. We, too, need to plan - to think ahead in order to fashion, out of the time remaining, the best of what is possible.
As I am dying from cancer, I have learned some things that I think are important for a dying person to know in order to plan. I am a physician, but what I have learned has little to do with my medical training. I have learned this as a person; perhaps my medical experience was helpful because I have paid close attention to the actions and reactions of people around me.
First, it is likely that you will be surrounded by persons who mean well but, in the end, you must die your own death. Dying can be considered a journey one takes alone with a crowd. Family and friends are the first to gather around you, and they offer the most comfort.
Here are some pieces of advice to remember in those first few days after you learn the bad news.
  1. One or two people - probably family members - will make enormous personal sacrifices to help you. If you are married, your spouse is likely to do this, but don’t be surprised if others - a daughter, a brother-in-law, or even a friend, step forward to offer extraordinary help. Be grateful, and accept help, from whatever source, graciously.
  2. Some family members, but especially friends, will treat you differently. Even before you show signs of serious illness, people will have a different look in their eyes as they talk with you. You might consider this patronizing or over bearing. It may be difficult, but it is best to ignore their attitudes and treat them as you always have. They will come around to their normal selves when they get over the shock.
  3. Happily accept all gifts from family and friends. It makes them feel better and you might receive something you really like and appreciate.
  4. Don’t be afraid to ask to be alone. We need time to be by ourselves. Some family and friends may feel driven to fill your every waking moment with activities; perhaps they are trying to “take your mind off” your impending death, but they may also be doing the same thing for themselves.
  5. Be your own counsel. No one, including your physician, religious counselor, spouse, or friends can understand 100% what you want and need. It surprised me that some people seemed to “bully” me with advice when they learned that I was terminally ill. We should remember Immanuel Kant’s advice to avoid accepting someone else’s authority in place of our own powers of reason. We are the ones who should be considering alternatives and making choices. We can, and should, ask for advice. Make telephone calls and read books - but ultimately, we should decide.
  6. Slow down and ask your family and friends to slow down. There may not be a lot of time, but there is sufficient time in all but the most extreme cases to think, plan, prepare.
There are things you need to know from your doctors and other health care staff. You need not ask all of the following questions or ask them in this order. Still, these questions deal with crucial issues that need to be addressed and, hopefully, resolved.
  1. What is my disease?You should find out as much as possible about your disease. What is it? How will it affect me? And very importantly, how will it cause my death? First, ask your physician. Additionally, many popular books are available in bookstores and libraries which can give you a basic sense of your disease process and disease terminology. National organizations, such as the American Cancer Society, and often local hospitals can provide brochures, video tapes, or even lay experts to help you and your family understand your particular disease. Ignorance is not bliss; the more you and your family know, the better able everyone will be able to cope with what is happening.
  2. Should I seek a second opinion about my disease and my condition?Seek a second opinion! A second opinion will relieve your mind and resolve doubts one way or another that a major mistake has not been made. More importantly, a second opinion will offer a slightly different perspective that may help everyone’s understanding. Don’t be embarrassed about asking for a second opinion or think that you will make your physician angry. Second opinions are perfectly acceptable, and many physicians are happy when their patients seek second opinions. The original diagnosis is usually confirmed, and you are then more prepared to follow prescribed treatments.
  3. What health professional do I especially trust?Search for and then trust in a single individual. This does not mean you should not listen to all health professionals and follow reasonable directions and advice. But focus on one individual as the final helper. This normally will be the specialist physician in charge of your case. However, you may know your family doctor better than you know your cancer specialist. If this is the case, your family doctor may be the one to choose. But, if you do, make certain that your family doctor knows that he or she is serving that role
  4. Why am I going into the hospital?There are four basic reasons why a terminally ill person would be hospitalized, but not all four necessarily apply to every patient. They are: (1) to confirm the diagnosis and analyze how far the disease has progressed; (2) to provide treatment that can only be given in the hospital, (3) to treat a severe worsening of the disease; and (4) to treat the final phases of the disease, if this cannot be done at home or with hospice. You should know which applies to you so that you can understand why things are done to you and what benefits you can expect.
  5. What are the hospital rules about terminally ill patients?Hospitals and medical centers have written rules and procedures that outline in detail how the hospital will deal with terminally ill patients. These are not “treatment” rules. These protocols or guidelines, as they are called, deal with how to handle end-of-life issues, such as whether the patient (or the patient’s family speaking for the patient) wishes extraordinary “heroic” measures to be used to keep the patient alive. Hospitals are obligated, and very willing, to share these protocols or guidelines with patients and families. Consider getting a durable power of attorney in which you name one or two people to make decisions or choices on your behalf if you should be incompetent or incapable of making decisions yourself. Read the “Do Not Resuscitate” policies of the hospital. Death should be peaceful, and you should not ask for anything that gives you prolonged agony.

    You should be aware that nurses and other hospital staff may not know that you are terminally ill. This fact may not be written in your chart, which can lead to conflicts between families and hospital staff. The family may assume that everyone in the hospital shares their grief, and will not understand the workaday attitude of nurses, dietitians, or others. It is okay for the family to tell the hospital staff that you are dying since they may not know.
  6. What resources are available from the health care community?Most hospitals have many services available to patients and families to help with nonmedical aspects of your care. These include social services and psychological, financial, and religious counseling. For example, a visit, before hospitalization, to the hospital financial counselor by a family member to check on insurance and payment plans is a wise move. In the rush to admit a patient, important information may not get recorded. A 15 minute meeting with counselors can avoid stress and anger over incorrect bills. Similarly, meeting with the hospital social worker may be very helpful in arranging home care. Use these services!
  7. What can I do if it seems that nothing is being done or if I don’t understand why certain things are done to me?Hospitals, clinics, and doctors’ offices can be confusing places. You can begin to feel you have no control over what is being done to you, and you may wonder if anyone really understands your case. This is the time to call the health professional who is your primary contact - the one you decided you fully trust - your physician specialist or family physician. Ask this person to explain what is going on. Have him or her paged or even called at home if your situation is very upsetting. It is the physician’s responsibility to help you, and he or she will not be angry that you called.
  8. How will I and my family pay for my treatment?Financial professionals employed by hospitals understand billing and what may or may not be covered by Medicare, Medicaid, or private insurance. Consult them and be sure to ask every question to which you and your family need an answer. It is important that you and your family do not panic over billing. Ask for advice and help.
Sometimes the hardest part about dying is the effect it has on your family and friends. Helping them deal with your death helps you find peace and comfort. If you are not at peace with your death, ask the health professional you especially trust to help you find peace. That person will help or will get whatever help is needed. After all, it is the goal of all health professionals, to give you comfort and health during life and peace to you and your family at death.
Related Articles:Helping Yourself Live While You Are Dying What Does Someone Dying Need?

Wednesday, December 8, 2010

What you can do...

Be with them, do for them, pray with them!

Thursday, December 2, 2010

greeting cards for cancer patients

greeting cards for cancer patients

A few encouraging words to say to someone going through cancer treatments

As I have gone through this myself the greatest words or deeds were:

*  Do you want a neck rub?
*  Can I bring you something special to eat?
*  Can I help you with your housework?
*  Can I drive you to your next appointment?
*  I love you and will be here for you.
*  Offer to do something specific, don't just ask if there is anything you can do.  We always answer "no" trying to be strong or unable to think of anything at the moment. If you do offer, be sure to carry through!

*  Don't tell them it will be all right unless they ask!
*  One of the other things I found helpful was for someone to come over once a week and help me weed and water my flower gardens!

*  There was one dear lady who knew of my circumstances, that I had never met before, yet she would drop off flowers or homemade cards periodically on my doorstep.  I'll never forget how a complete stranger could be so thoughtful and kind.  That, I will remember forever.


Holidays are tough... wish heaven had a phone... so I could hear your voice again.

I thought of you today... but that's nothing new.  I thought of you yesterday and days before that too.  I think of you in silence and often speak your name.  All I have are memories... and pictures in a frame.

Monday, November 22, 2010

Missing My Sister

On the one year anniversary of losing my sister, I came across this lovely poem that just about says it all...

One morning I found you in eternal sleep;
I tried to wake you as I began to weep,
But all my pleas you could not hear;
Oh if I could have only kept you near,
Away from the voices of those who went before,
Who beckoned you to come to that distant shore.

I find it so very hard to believe
That you have gone and I must grieve;
I call out your name -- you answer not,
And I look for you in every familiar spot.
Everything seems so strange and surreal,
I ask everyday is it a dream or real?

Where are the soft brown eyes of affection?
Where is the laughter and talk of childhood reflection?
Where is the loving care when I was sick or sad?
Where is the generous soul for which I was glad?
Where is the forgiving and understanding heart?
Where are the bonds that were there from the start?

I miss all the little ways you showed you cared,
For there were so many good moments we shared;
Looking back on my life’s assorted scenes,
I realized you taught me what love truly means;
You were my trusted confidante and best friend,
On whose loving support I could always depend.

I look at your smiling face in all my photos;
Memories flood my mind as I touch the mementos
From the happy times you and I have had,
But now these bring tears and make me sad;
For the time together went by in a wink,
Life was not as long as we’d like to think.

Sometimes memories bring comfort and make me smile,
But there are times when grief takes over for a while;
Friends offer gentle words and prayers to console,
And tell me what has happened to your loving soul;
Can it be true what they say of time healing grief?
Is it enough when they say death has given you relief?

Can we believe what others say of a better place,
Where our beloved ones rest in God’s warm embrace?
I should be happy you’re free of pain and sorrow,
And rejoice that you’ll always have tomorrow.
How can I then be so heartbroken and selfishly cry,
Return to me from that peaceful place where you lie!”

Now I look down at your name on a cold hard stone
That says little of the loving light you have shone;
It tells nothing of the wonderful person you were,
And only serves to remind me of the painful loss I endure;
But I know your kind soul wants no tears or pain,
Instead you’d want warm memories and love to remain.

Although I cry and stand grief-stricken by your grave,
I promise not to forget the loving memories you gave;
But still I miss you so very much my sister dear,
And your caring words I once again long to hear;
My heart’s only solace is one day I will see you as before,
Beckoning me to come join you on that white distant shore.

                                                            ~ Belinda Stotler

Letter to Heaven #2

My Dearest Janel,

I had thought with my last letter to you that I was starting to accept the fact that you are gone and in fact I think writing was therapeutic for me.  Maybe I have just gone too long before writing my second letter to you because it has been very difficult.  I find myself tearing up every day, even now.  I wish you could still talk or communicate with me some how, some way.

I've been feeling like I've let you down in some way, that if only I would have noticed your symptoms sooner, that maybe you would still be with us today.  Are my tears more for the guilt I feel than the actual loss?  I don't know... it just hurts not to have you here!  I've read where guilt is one of the hardest phases of coping with a death of a family member.  Guilt plays out in a way that most of us do not understand and yet we may not even realize that we suffer from the feelings of guilt.  We often hear people say, what if or, if I would have just..., these are all part of guilt and we must understand it before we can learn to cope with it.

Then, I wonder what really would have been best for you, my Janel?  What's worse, dying from a heart attack or some other quick way, and not getting the chance to get your affairs in order or say goodbye, or being diagnosed with some terrible disease such as yours and having the opportunity (if that's what you want to call it) to say goodbye, even though you didn't really get to say goodbye because, I think, you thought you were coming home.  God, it was so hard to be by your side and know that you weren't, and to see mom and dad holding your hand and kissing you, knowing their beautiful daughter wasn't going to be with them anymore was truly unbearable.  We were mourning your fate before it really happened.  Janel, there was such a spiritual presence in your room that night with all your aunts, uncle's, cousins, and so on, as we held hands around you and prayed; I will never forget that moment.  We knew your end was very near.  We couldn't tell you that grim news.  We wanted you to keep fighting!  Was three days enough time???  Why can't we just accept death as a part of life???  Why do we have to hurt so much???  ................???  I WILL see you again one day my dear sister.

OK, let me dry my eyes and move on here.  On a lighter note, we had the Robinson Reunion this past weekend and the Piper Reunion will be next weekend.  Both of them are at the City Park this year.  What a beautiful park that is!  I just love those big sprawling oak trees, the large pond with all the ducks that roam throughout, those huge orange and black carp, the rock formations, and just how beautiful that park really is.  Unfortunately, the parking is not very good for the back pavilion, especially for the older generations.  And the concession stand is already closed!  Just because it's after Labor Day shouldn't mean they need to close up.  For heavens sake, it doesn't really get cold until November or later!  Remember when you and I took pictures of mom and dad for their 50th anniversary in 2008?  We thought we were professional photographers!  We did take some good pictures though.

Fantasy Football has started this week and I know how much you and I both grew to love it, not the game itself, but the competition between league members, and which players were scoring. Carl has made sports so much more interesting, hasn't he?  I now have a player I route for, Tim Tebow, with the Denver Broncos.  I know you would've loved him also.  Humility has always been a trait he has exhibited throughout his career.  For his final college game, he chose a Bible verse that showed why.  He wore Ephesians 2:8-10 on his eye black in the Sugar Bowl game.  You know, that streak of black paint the players put on just under their eyes to keep the sun from glaring in their eyes.  The verse reads:  “For by grace are ye saved through faith; and that not of yourselves:  it is the gift of God:  Not of works, lest any man should boast.  For we are his workmanship, created in Christ Jesus unto good works, which God hath before ordained that we should walk in them.”  He's an amazing young man!

Autumn has unofficially come.  All of the leaves should be off one of our maple trees in the back yard by the end of September.  We just haven't had enough rain this summer.  I'm not sure we will even have much Fall color on the trees that do have leaves remaining.  We haven't mowed since June, only once two weeks ago to mulch up the leaves that had fallen.

Dad's working in the sun room, painting and refinishing.  It's odd when I go over there, not to see you out there helping him.  You were his "right hand man."  I know how much he must miss your help around the house.  You were everything...  I can wholeheartedly echo the words of Proverbs 23:24: “The father of the righteous shall greatly rejoice: and he that begetteth a wise child shall have joy of him.”

Oh, and I've added another song to My Playlist at the bottom of my blog.  It's #22 on the list, Last Cheater's Waltz by T. G. Sheppard... one of your favorites.  Mom had told me recently that you and her had slow danced to that song in the kitchen one day.  Every time I hear it now, I imagine you both dancing to that and giggling.

In writing this, I feel a calm.  I think you are with me now and see each letter as I type it.  I love you and pray you are by our Lord's side and continue to guide us.

Letter to Heaven #1

Dear Janel,

Just so you know… I talk to you often. I know you hear and feel my pain in missing you. I’m writing to you because I know that you will receive this. I never removed your name from my email contacts. Feel free to write anytime… I also have you in my phone with a special ring tone so that I know it’s you when you decide to call. I’m going to post this on my blog because it will be here forever.

We went to the Potomac Bead Company this year again for Mother’s Day. It was real hard for mom and me to be there without you. I’ve been wearing your bracelet often. I enjoy wearing a piece of your jewelry or one of your outfits. I feel as if you are here with me when I do this.

Your birthday will be here soon and it happens to be on Father’s Day. Mom, dad, and I don’t know whether we will be going up to Pen Mar Park this year to celebrate. You know how much we enjoy going up there for Father’s Day. It might just be too hard for us to have a good time.

Carl and I visited Megan and Glenn earlier in June. We stayed with them and enjoyed a trip downtown to the Market, which we so love. We also enjoyed a beautiful dinner at Glenn’s mom’s home. We had such a nice time it was hard to leave.

Faith is out of school for the summer and I’m anxious to get a call from her saying she’d like to stay for a few days. We do have the twin neighbor girls, Emily and Melanie, to have some fun with. Yesterday, I took some frozen lemonade popsicles outside to share with them. They were both amazed how I froze the lemonade into a popsicle. Kids are so much fun!

The Greencastle Relay for Life was last month and mom, dad, Carl, and I went. I walked the survivors lap and we had a candle lit in remembrance of you. I pray that the donations will help to find a cure for all cancers very soon!

As you probably know, your pet buddy Casey passed away last month, rather suddenly and sort of ironically, from about the same thing you died from. Dad buried him right outside your bedroom window.

Mom and dad are joining us for dinner this afternoon. We still play dominos, although it’s not quite the same without you.

Take care LOVE!!! Don’t forget to send me an occasional sign so I know you are here with me.

Big Sister,