living with mesothelioma

A certain amount of distress is normal

If you or one of your loved one has cancer, it is normal to experience some amount of distress. To some extent, cancer-related distress is because of the fears and attitudes people generally have about cancer. For instance, one of the greatest fears people have is that a cancer diagnosis implies death. But it is wrong to make misleading assumptions that cancer always results in the death of the patient. Currently, around 11 million Americans who were earlier diagnosed with cancer are alive.

The word “distress” has several different meanings. Here, this word will be used to describe unpleasant emotions and feelings that may create problems for you while you are trying to manage your cancer and its treatment. Family members and friends of cancer patients are also likely to experience distress. It is often difficult to cope with the variety of changes occurring in your life as a result of cancer in a loved one.

If you are distressed, it may imply that you feel:

  1. Hopeless
  2. Sad
  3. Afraid
  4. Powerless
  5. Anxious
  6. Guilty
  7. Discouraged
  8. Panicky
  9. Uncertain
  10. Depressed

The stress you experience while trying to cope with cancer can affect other areas of your life as well, apart from your feelings. Its effects may be noticeable on your thoughts, your actions and behavior and your interactions with other people.

It is normal for people to feel disturbed when they come to know that they have cancer – irrespective of the significant advancements made in cancer treatment. All of a sudden, many different aspects of life start to appear vague and uncertain. People with cancer are afraid and concerned about the potential changes that may happen in their body. They may be concerned about how their family members and friends will deal with their cancer and all the unexpected or unpleasant things they may experience. More often, people with cancer are worried about the future. They often wonder, “Why me?” and “Will I die?”

Once you know that you or one of your family members has cancer, you may not feel safe any longer. You may feel vulnerable, exposed, weak, and afraid. These feelings normally last throughout the duration of the treatment and may be accompanied by sadness and anxiety.

It is quite normal to be worried while you are waiting to receive the first treatment. “It was one of the worst times for me when I was waiting to be administered my first chemo treatment,” said a cancer patient. “However, I felt okay when the treatment was over because it was not as bad as I had thought it would be. I started feeling better because I was finally taking appropriate steps to fight cancer.” Waiting for cancer surgery can also be an unpleasant experience. Often, people not only worry about the cancer, but also about whether their cancer is constantly growing as they wait for the surgery. Your fears related to the potential changes that can occur in your body as a result of surgery can also contribute significantly to your distress. Also, you may be concerned about home and work life and how they may change due to the cancer. Financial and insurance issues may also add to your concerns.

For some patients, their most difficult time comes after their cancer treatment. Instead of feeling happy about the fact that treatment is finally over, they start feeling even more distressed. As one patient said, “Now I am on my own, and I am simply trying to make out what might happen next.” It can be quite scary to visit the oncologist (cancer doctor) when the treatment is over. Almost everyone seems afraid that their cancer will come back (recur). Feelings like this are normal, too. “Each time I experience aches and pains, I feel as if the cancer is coming back – even when it is just some random pain in my big toe,” said one patient.


April 1-7 was National Asbestos Awareness Week

Over the last thirty years, scientists and researchers have conclusively determined that exposure to asbestos can lead to severe respiratory diseases.  The most dangerous and prevalent of these diseases is mesothelioma, a form of cancer that attacks the soft tissue surrounding the lungs.  A study by the Centers for Disease Control estimated that as many as ten thousand people in the US perish from lung diseases related to asbestos exposure each year, including up to three thousand from mesothelioma, and that the numbers will continue to climb over the next ten to twenty years.

One quality of mesothelioma, which could lead to this higher incidence rate, is that early symptoms of the disease often resemble those of other lung disorders, which leads to improper diagnoses.  By the time patients with the disease receive an accurate diagnosis, the aggressive cancer often leaves the patients with a year or less to live.

Linda Reinstein was one of the co-founders of the ADAO in 2004.  Currently, she serves as the group’s executive director.  Her husband, Alan, died of mesothelioma he contracted while exposed to asbestos.  She says that her group is dedicated to stopping the mining of raw asbestos ore and banning the manufacture and installation of construction materials that contain asbestos.

While asbestos bans are in place in many nations in the European Union, as well as Australia and New Zealand, other industrialized nations have not enacted such laws.  Asbestos mines are still active in Quebec, Canada, and that country exports tons of the toxic substance each year to developing countries.  The United States Congress has yet to pass legislation banning the mineral, although several government offices (such as the Environmental Protection Agency) place heavy regulations on its use and levy stiff fines against violators.

As part of the National Asbestos Awareness Week campaign, Ms. Reinstein and other group leaders asked citizens to contact their congressmen and senators about legislation that would ban the use of asbestos.  The group is also launching educational efforts to enlighten the public as to both the prevalence and the dangers involved in the widespread use of asbestos across the country.

As part of that effort, and in light of recent reports involving “do-it-yourself” home renovation, ADAO recommends that homeowners who are considering remodeling their older homes ask a certified inspector to check the property for the presence of asbestos.



Advance Directives – Living Wills

How to ensure that your wishes are respected in case you are not able to look after yourself due to an illness or accident.

Advance directives allow people to explain their preferences in relation to the type of medical treatment they are willing to undergo (or want to avoid) in case they lose the ability to make decisions or communicate due to an illness or accident.

The living will and the durable power of attorney are the two different kinds of advance directives. Both of these are written, legal documents. You may require a lawyer or you can create one yourself. Different states use different types of forms. You can make alterations in the document or cancel it any time you want.

Using a living will, you put into writing all your preferences regarding your treatment and care. You can let others know of your decisions about feeding tubes, receiving cardiopulmonary resuscitation and the use of a respirator to keep you alive.

If you are unable to make decisions on your own, you can choose a durable power of attorney to allow another person to take decisions on your behalf. A durable power of attorney may declare: If, due to some illness or accident, I am unable to make decisions regarding my healthcare, I want a surrogate to decide on my behalf. Usually, but not always, the surrogate (or agent) is a family member.

The best way to go about it is to have both a living will and a durable power of attorney. Moreover, you need to be very specific when you are writing a living will. It will make it easier for the individual whom you choose as your surrogate to take care of all your wishes.

The Patient Self-Determination Act (PSDA) was enacted by the Congress in 1990. The law focuses on the need to inform patients about their rights to plan and prepare advance health-care directives.

Even when you have good overall health, you need to talk about care directives and end-of-life treatment with your spouse, other family members, your doctor, nurse or clergy. If you prepare advance directives based on the discussions, it will benefit all, especially at times when critical decisions need to be made.

Although more people have started using advance directives these days, some people still tend to avoid it due to a disturbing misconception. The perception amongst these people is that they will be denied medical care in case their will says that they do not want to receive life-sustaining treatment. However, this is not true. You will receive complete medical care, as required.