Saturday, December 27, 2008

Thyroglobulin (Tg) and Tg Antibody (TgAb) Testing for Patients Treated for Thyroid Cancers

The measurement of the protein Thyroglobulin (abbreviated Tg) in blood, is an important laboratory test for checking whether a patient still has some thyroid present. The power of a serum Tg measurement lies in the fact that Tg can only be made by the thyroid gland (either the remaining normal part or the tumorous part). This means that when a patient has had their thyroid completely removed, the measurement of Tg in a blood sample can be used to check whether there is any tumor left behind.
  • Detectable Tg Levels: When patients have had cancerous growths that make Tg, the absence of Tg in a blood sample is usually good news for a patient who has had thyroid surgery to remove their thyroid gland containing a cancerous growth. However, many patients still have measurable levels of Tg in their blood after surgery. Often this Tg is coming from a small amount of normal thyroid left behind. This means that a measurable level of Tg does not necessarily indicate the presence of tumor. Often physicians will give a small dose of radioiodine to get rid of the last remaining part of the normal thyroid gland in order to make later Tg measurements a better marker for any tumor left behind.
  • TSH & Tg: Thyroid Stimulating Hormone (TSH) is the pituitary (master gland at the base of the brain) hormone that drives the thyroid gland to produce thyroid hormones and as a by-product, release Tg into the blood. TSH is believed to cause the growth of most thyroid tumors. This is why it is important to take thyroxine medicine (e.g.: synthroid, levoxyl, unithroid) to keep TSH levels low. When TSH is high (before scanning) Tg is increased about ten times. You should not compare the Tg level measured while taking thyroxine medicine (when TSH is low) with the Tg level measured when TSH is high.
  • Tg Measurements before Surgery: Many physicians still do not recognize the value of a pre-operative Tg measurement. A high Tg level before surgery does not indicate that a tumor is present. However, when a biopsy suggests that the growth is cancerous, the finding of a high Tg level before surgery is a good sign, because it suggests that the tumor makes Tg, and that after surgery Tg can be used as a sensitive tumor marker test. In fact, Tg will be a more sensitive post-operative tumor marker test when the cancerous growth is small and the pre-operative Tg is high!
When a patient has a low Tg pre-operatively, the cancerous growth might be unable to efficiently make Tg. In such patients, an undetectable Tg level after surgery is less reassuring than if the patient had had a high pre-operative Tg value. Conversely, when Tg is detected post-operatively in such patients despite ablation of all normal thyroid, this could indicate that a large amount of tumor is still present.
  • Tg Measurements after Surgery: Changes in the Tg level over time (six months or yearly intervals) are more important than any one Tg result. After surgery, blood samples are usually taken for Tg measurement while the patient is taking their daily dose of thyroxine medication (TSH low).
  • Tg Method-to Method Differences: Unfortunately, Tg measurement is technically difficult and different Tg methods produce different results. Tg measurements made by different laboratories on the same blood specimen from a patient can vary as much as two-times! It is important to compare Tg measurements made by the same method, if possible performed by the same laboratory. This is because method-to-method differences makes it impossible to tell whether a change in the Tg level means there is a change in the amount of tumor, or is just a problem with the way the test is done.
  • Concurrent Tg Re-measurement: Some laboratories save all the unused blood left after a Tg test has been completed, so that the spare blood can be re-measured side-by-side with a future blood sample. This "concurrent remeasurement" approach is the best way to tell whether a change in the Tg level means that there has been a change in the amount of tumor, or is just due to the way the test was done. The concurrent remeasurement approach helps the physician check for tumor re-growth at an earlier stage. Additionally, laboratories that bank patient specimens will have them available for any new tumor-marker tests that may be developed in the future.
  • Tg Antibodies (TgAb): Approximately 15 to 20 percent of thyroid cancer patients have antibodies to Tg that circulate in their blood. These antibodies are abbreviated as TgAb on laboratory reports. Unfortunately, TgAb interferes with the measurement of Tg by most methods. Whether these antibodies cause incorrectly high or low values depends on the type of Tg method used by the laboratory. Most clinical labs use the more modern type of Tg method (called immunometric assays (IMAs) or "sandwich" methods).
These methods typically report falsely low Tg values when TgAb is present in a patient's blood. Falsely low values may lead to a delay in necessary treatment. Alternatively, an inappropriately high Tg level, which can be a problem with some of the older type of Tg method (called radioimmunoassays, RIAs) can cause patient anxiety and lead to unnecessary scans or treatment. There is currently disagreement between professionals regarding the best type of method to use (IMA or RIA) for patients with antibodies.

Some laboratories in the United States believe that RIA methods have less TgAb interference and provide more clinically reliable values than IMA methods. In fact, these laboratories believe that IMA methods should not be used at all when TgAb is present, because an falsely low Tg value is more of a problem than a falsely high Tg one.

For example, an inappropriately low Tg value reported because of TgAb interference can lead to a delay in treatment. In contrast, an inappropriately high Tg value reported because of TgAb interference usually increases vigilance on the part of the physician. Some laboratories now restrict the use of the IMA methods to patients without antibodies and continue to use the older RIA-type methods for patients with antibodies, although the RIA test result takes longer to report.
  • TgAb Methods: Since interference by Tg Antibodies has serious effects on the reliability of the Tg value reported, it is important to use a precise and sensitive Tg antibody test method to detect TgAb. Unfortunately, TgAb methods differ even more than Tg methods! Some patients are judged to be antibody-positive by some methods and antibody-negative by others. It is therefore important to compare TgAb measurements made by the same method, if possible performed by the same laboratory.
It is also important for the laboratory to use a modern sensitive immunoassay test to check for TgAb. You can tell if your TgAb was measured by one of these tests by the units that are reported. If the antibody result is followed by U/mL or IU/mL it is a modern immunoassay test. If the antibody is reported in titers (1:100, 1:400, 1:1600 etc) this is an insensitive old-style agglutination test.
  • Serial TgAb Measurements: It is important for the laboratory to measure TgAb in every specimen sent for Tg measurement. This is both because a patient's TgAb status may change from positive to negative or vice versa, and also because the trend in TgAb values over time (i.e. 6 to 12 months) gives additional information on how well the tumor is responding to treatment.
A trend down in TgAb levels overtime (years) is a good sign that treatment is effective. In contrast, an increase over time may be an early sign of a recurrence. When a patient has TgAb detected, it is not unusual to see a temporary rise in the TgAb level during the first six months following radioiodine therapy. This may even be a sign of the effectiveness of the treatment. Usually, TgAb values return to the original value or below after six months.


Wednesday, December 24, 2008

A Mother's Prayer -

My sweet baby on loan from above 
no better treasure could I more love 
I stand here beside your bed as I pray 
I lay my hand on your head and I say:

May you grow up to serve Him 
all of your days 
May He lead you and guide you 
in all of your ways 
May His hand bless your future with 
friendships that last 
May you cherish your youth 
and not grow up too fast

I stare in wonder at your tiny frame 
Just to think that God knows you by name 
He knows every hair on your beautiful head 
He knows all your thoughts before they are said

May you grow up to serve Him 
all of your days 
May He lead you and guide you 
in all of your ways 
May His hand bless your future with 
friendships that last 
May you cherish your youth 
and not grow up too fast

May God grant you peace 
in the midst of a storm 
May God give you strength even 
when youre forlorn 
May you answer the door when 
Jesus comes knocking 
May wisdom guide you when 
your mouth is talkin 
May discretion protect you 
and keep you pure 
May you never stumble 
or fall for a lure 
May your heart remain humble 
to the very end 
May uprightness and truth 
be what you defend 
May the world not ensnare 
or change who you are 
May the light that's within you 
shine like the stars 
May angels surround you 
body, spirit, mind 
May favor and peace be yours to find 
May rejection and pain 
never reach you 
May your spirit grow bold 
for what youre called to 
As you rest in Gods care I will rest too 
Knowing that Jesus is watching over you 


Hannah speaks: I love you, Mommy

Sunday, December 21, 2008

Music Heals The Soul and Motivates the Spirit

Please note that everyone has different tastes in music. Listen to the music that you feel comfortable. Sitting down and forcing yourself to listen to relaxation music that you don't like may create stress, not alleviate it.

Music has always been a great healer. In the Bible, we learn about how David played the harp to help ease his severe depression of King Saul . Music is a significant mood-changer and reliever of stress, working on many levels at once.

Many experts suggest that it is the rhythm of the music or the beat that has the calming effect on us although we may not be very conscious about it. They point out that when we were a baby in our mother's womb, we probably were influenced by the heart beat of our mother. We respond to the soothing music at later stages in life, perhaps associating it with the safe, relaxing, protective environment provided by our mother.

Music can be one of the most soothing or nerve wracking experiences available. Choosing what will work for any individual is difficult, most will choose something they 'like' instead of what might be beneficial. In doing extensive research on what any given piece of music produces in the physiological response system many unexpected things were found.

Many of the so-called Meditation and Relaxation recordings actually produced adverse EEG patterns, just as bad as Hard Rock and Heavy Metal. The surprising thing was many selections of Celtic, Native American as well as various music containing loud drums or flute were extremely soothing. The most profound finding was Any music Performed Live and even at moderately loud volumes even if it was somewhat discordant had very a beneficial response.

Whenever the proper sounds were experienced an amazing right/left brain hemisphere synchronization occurred. The normal voltage spiking pattern changed to a smooth sinusoidal waveform and the usual voltage differential equalized. The entire human energetic system is extremely influenced by sounds, the physical body and chakra centers respond specifically to certain tones and frequencies. Special consideration should be given to the positive effects of one actually playing or creating music themselves.

Music / Singing

Play a tune on the guitar and sing along. That works even in the worst of times. By the time I'm done with the song, I've breathed deep, I've controlled myself to some degree to be able to sing on key :-), and I've come back into myself, and more into the real time moment.

Internet Discussion Forum

  1. Among the first stress-fighting changes that take place when we hear a tune is an increase in deep breathing. The body's production of serotonin also accelerates.
  2. Music was found to reduce the pain during dental procedures.
  3. Playing music in the background while we are working, seemingly unaware of the music itself, has been found to reduce the stress.
  4. Music was found to reduce heart rates and to promote higher body temperature - an indication of the onset of relaxation. Combining music with relaxation therapy was more effective than doing relaxation therapy alone.

Maximizing With Music Therapy

As we mentioned before, there is not a single music that is good for everyone. People have different tastes. It is important that you like the music being played. The following are general guidelines to maximize the effectiveness of the music.

To wash away stress, try taking a 20-minute "sound bath." Put some relaxing music on your stereo, then lie in a comfortable position on a couch or on the floor near the speakers.
For a deeper experience, you can wear headphones to focus your attention and to avoid distraction.

Choose music with a slow rhythm - slower than the natural heart beat which is about 72 beats per minute. Music that has repeating or cyclical pattern is found to be effective in most people.

As the music plays, allow it to wash over you, rinsing off the stress from the day. Focus on your breathing, letting it deepen, slow and become regular.

Concentrate on the silence between the notes in the music; this keeps you from analyzing the music and makes relaxation more complete.

If you need stimulation after a day of work, go for a faster music rather than slow calming music. When going gets tough, go for a music you are familiar with - such as a childhood favorite or favorite oldies. Familiarity often breeds calmness.

Take walks with your favorite music playing on the walkman. Inhale and exhale in tune with the music. Let the music take you. This is a great stress reliever by combining exercise (brisk walk), imagery and music.

Listening to the sounds of nature, such as ocean waves or the calm of a deep forest, can reduce stress. Try taking a 15- to 20-minute walk if you're near the seashore or a quiet patch of woods. If not, you can buy tapes of these sounds in many music stores.

Thursday, December 18, 2008

Anger Management: The Basics

Road rage. Yelling and throwing things. Violence in the home and at work. Getting into fights. Putting other people down. Rage that is always just below the surface, ready to boil over.

These are just a few examples of anger that has gotten out of control. Maybe they are things that happen to you regularly. If they do, you may have a problem with anger, but you are not alone. It is estimated that 20 percent of Americans have a problem managing their anger.

Anger is a normal human emotion. It is a natural way to react to threats, whether real or perceived. Anger can bring to light situations where something isn't right, where your legitimate needs or those of others are not being respected. But anger becomes a problem when it feels overwhelming and causes you to lash out in destructive ways, hurting yourself and others.


Like any emotion anger is a form of energy. Energy never goes away; it just gets changed and redirected into different forms. So managing anger doesn't involve eliminating it. Suppressing anger -- trying to beat it down -- can have harmful effects, like raising your blood pressure, contributing to depression, or leading to problems with the way you relate to others. At the other extreme, it's just as destructive to let your anger loose by expressing it in violent words and actions.

Managing anger is about dealing with the angry energy you feel inside, and finding constructive ways to react to your feelings outside. Ultimately, responsigibility for anger is our own, not another's. Whatever your individual situation, you can take some practical steps to help you manage anger.

Stop and think for a moment. When you are angry, trying to stop and think may seem like the hardest thing to do. But giving some rational thought to a situation can help you step back from your anger. Many things can make you angry: a particular person or situation, memories of a traumatic event, chronic stress. Understanding what's causing your anger at a given time is a good step toward dealing with it constructively.

Part of thinking through your anger has to do with understanding how it makes you react. Anger tends to make you see things in extremes and absolutes. Someone makes a mistake, and you say, "Why can't you ever do anything righ?" Something goes wrong, and you ask yourself, "Why don't things ever work out for me?' Someone cuts you off in traffic or tailgates you, and you think, "Doesn't anybody know how to drive anymore?" In addition to painting yourself into a corner, such reactions alienate others and make them defensive and uncooperative, which only fuels your anger.

Backing away and thinking the situation through for a moment can drain your rage. The world is not out to get you. Other people make mistakes, or even do shortsighted and inconsiderate things, but there really isn't much you can do about it. In fact, the best thing you can do is not get drawn in and make the problem worse.

Anger can also make you demanding and unreasonable. Stop and ask yourself, "Am I really seeing things clearly ? Are my expectations realistic ? Can I really be the only one who's right while everyone else is wrong ?" A little reasoning with yourself goes a long way toward adjusting your emotions to the situation. Is the cause of your anger a problem you can address without getting mad?

" There are two things a person should never be angry at: what they can help, and what they cannot." ---Plato

Even if you can't solve an annoying problem, you can learn to accept it. Maybe there isn't much you can do, but at least you know you tried to deal with what is causing you to get angry, and you can try to make the best of the situation.

Stay focused and communicate with yourself and others: Disputes between people are inevitable, and can even be healthy, specially when people care very much about the same things or one another. But arguments can get out of control when unrelated things are brought in, or when an angry person projects his or her issues onto another.

If you're angry about how someone is treating you, don't use how you feel to rage at them about their family, upbringing, personal habits, physical appearance, and so on. Also try to avoid making them responsible for things only you can deal with in yourself.

When you are angry, specially if you are in an argument, try to stay focues on resolving the issue. Unless you feel you are really getting at what's going on, don't bring in other matters or cast the other person in the role of villain.

In the heat of anger it can be hard, but try to communicate with yourself.
  1. What is really bothering me ?
  2. Is it something more about me or inside me, rather than what another person is doing ?
Then, communicate with the other person: Am I saying what's making me angry, rather than flying off the handle and accusing the you of things that don't have much to do with the matter at hand ?
  • Take steps to express what's bothering you in a non threatening way, and invite the other person to do the same. Then you might be able to move ahead to a peaceful compromise or resolution.
Humor can be a great release of tension: One way to react to a frustrating situation is to get mad; another is to laugh. You have to be a little careful about using humor to defuse an angry situation.
  1. Don't try to laugh the situation away -- that ignores the problem.
  2. Don't use cruel humor -- that's the same as lashing out.
Pointing out the humorous side of a vexing situation can do a lot to make it less aggravating. Of course your own efforts to manage your anger may not be enough. Communicating with others about your anger may also mean reaching out for help. Just as the recognition of out of control anger is growing, so is the ability to treat it. It is very likely that a therapist or counselor will be able to help you with an anger problem if you seek professional help and are willing to make the effort.
  • Try to relax. When you get angry, your body chemistry changes. Your whole system becomes stimulated. One thing you can do is try to relax your body and mind. The easiest and most effective way to calm down is by focusing on your breathing. " Conscious breathing" is also something you can do right away, even in the heat of the moment.
Make a conscious effort to make your breath as deep, slow, regular and quiet as you can. Your agitation will go down, your emotions will settle, and you'll be able to think more clearly about how you want to respond.
In addition, lack of food and nutrition puts stress on your mind and your body and makes you more likely to overreact. A healthy diet and regular exercise helps keep your emotional and physical systems in balance.
  • Change your environment. Sometimes managing your anger can be as simple as getting away from what is making you upset. Such behavior isn't necessarily running away or avoiding the problem. It's finding an alternative to the situation that doesn't result in frustration and rage.
If the way people drive a certain stretch of road always makes you irritated, find a different route. If someone is talking loudly on a cell phone, move someplace else rather than sit there and stew or lash out at the person. If a coworker or family member has an annoying habit they won't change, find something else to do when they're bothering you.
  • Look to your faith for help. In the face of injustice, there is a place for "righteous anger." Look at the Bible. God gets angry when people fall short of loving and following Go's ways. Jesus takes a whip and clears the temple of moneychangers. Many figures from different religious traditions responded with anger when they saw disrespect of God and persons.
If something is happening that you strongly belieive is unfair, whether it be to people you know, in your community , or on the national or international scene, don't ignore your anger, thinking there's nothing to be done, but try not to overreact either. Find constructive things you can do to make a difference.

In addition to giving anger a place in the cause of justice, faith also offers wisdom on managing anger. In his letter to the Ephesians, Saint Paul wrote, "Be angry but do not sin; do not let the sun go down on your anger" [Paul 4:26].  He put his finger on an important truth about anger; In itself it is not bad; but problems arise if you let it cause harm, including letting anger go unaddressed. Offer your excessive anger to God. Pray for strength, patience, wisdom and peace to work with your anger.

TAKE HEART:  Feeling angry is a normal, even a healthy part of being human. It becomes unhealthy when you express it in ways that hurt others or yourself. But anger does not have to take over your life or destroy your wellbeing and relationships. By being aware of what is making you angry, finding other ways to react to people and situations, using relaxation techniques, and drawing on spiritual resources, you can learn to deal with and transform your anger.

About the Author: Joel Schorn is a writer and editor in Chicago. He is the author of several CareNotes and Prayer Notes. He is also the coauthor with Alice Camille of A Faith Interrupted: An Honest Conversation with Alienated Catholics (Layola Press) you can visit his website at

Sources of Additional Help:

  1. Anger Therapy by Lisa Engelhardt and Karen Katafiasz, St. Meinrad, Indiana, Abbey Press, 1994.

  2. The Anger Trap: Free Yourself from Frustrations that Sabotage your Life by Les Carter, San Francisco, Jossey-Bass, 2004

  3. Taming the Tiger Within: Meditations on Transforming Difficult Emotions by Thich Nhat Hanh, New York, Penguin, 2004

Monday, December 15, 2008

Understanding Prognosis and Cancer Statistics

Patients and their loved ones face many uncertainties when dealing with cancer. It is natural for anyone facing cancer to be concerned about what the future holds. Understanding the nature of cancer and what to expect can help patients and their loved ones plan treatment, anticipate lifestyle changes, and make quality of life and financial decisions. Cancer patients frequently ask their physicians or search on their own for statistics to answer the question:

"What is my prognosis?"

Prognosis of cancer patients - the prediction of the future course and outcome of a cancer and an indication of the likelihood of recovery from that cancer. The doctor may speak of a favorable prognosis, if the cancer is expected to respond well to treatment, or an unfavorable prognosis, if the cancer is difficult to achieve cancer control. However, prediction is a prediction. When Oncologists discuss a cancer patient's prognosis, they are attempting to project what is likely to occur for that individual patient based on available data on record and past experience with patients in very similar circumstances.

Many factors affect a person’s prognosis. Some of the most important are the type and location of the cancer, the stage of the disease (the extent to which the cancer has metastasized, or spread if at all), and its grade (how abnormal the cancer cells look and how quickly the cancer is likely to grow and spread). In addition, for hematologic cancers (cancers of the blood or bone marrow) such as leukemias and lymphomas, the presence of chromosomal abnormalities and abnormalities in the patient’s complete blood count (CBC) can affect a person’s prognosis. Other factors that may also affect the prognosis include the person’s age, general health, and response to treatment.

You must remember and be very clear because we cannot stress this enough; when doctors discuss a person’s prognosis, they carefully consider all factors that could affect that person’s disease and treatment and then try to predict what might happen. The doctor bases the prognosis on information researchers have collected over many years about hundreds or even thousands of people with cancer but one can predict with 100% certainty what will happen in your care.

Whenever possible, the doctor uses statistics based on groups of people whose situations are most similar to that of an individual patient. Several types of statistics might be used to discuss prognosis. Some commonly used statistics are described below:

• Survival rate indicates the percentage of people with a certain type and stage of cancer who survive for a specific period of time after their diagnosis. For example, 55 out of 100 people with a certain type of cancer will live for at least 5 years, and the other 45 people will not. Survival statistics may further categorize the people who die by cause of death because some will die from unrelated causes. For example, of the 45 people mentioned above, 35 may die from their cancer and 10 may die from other causes.

• The 5-year survival rate indicates the percentage of people who are alive 5 years after their cancer diagnosis, whether they have few or no signs or symptoms of cancer, are free of disease, or are having treatment. Five-year survival rates are used as a standard way of discussing prognosis as well as a way to compare the value of one treatment with another. It does not mean that a patient can expect to live for only 5 years after treatment or that there are no cures for cancer.

• Disease-free or recurrence-free survival rates represent how long one survives free of the disease, rather than until death.

Because survival rates are based on large groups of people, they cannot be used to predict what will happen to a particular patient. No two patients are exactly alike, and treatment and responses to treatment vary greatly.

The doctor may speak of a favorable prognosis if the cancer is likely to respond well to treatment. The prognosis may be unfavorable if the cancer is likely to be difficult to control. It is important to keep in mind, however, that a prognosis is only a prediction. Again, doctors cannot be absolutely certain about the outcome for a particular patient.

Is it helpful to know the prognosis?

Cancer patients and their loved ones face many unknowns. Understanding cancer and what to expect can help patients and their loved ones plan treatment, think about lifestyle changes, and make decisions about their quality of life and finances. Many people with cancer want to know their prognosis. They find it easier to cope when they know the statistics. They may ask their doctor or search for statistics such as survival rates on their own. Other people find statistical information confusing and frightening, and they think it is too impersonal to be of use to them.

The doctor who is most familiar with a patient’s situation is in the best position to discuss the prognosis and to explain what the statistics may mean for that person. At the same time, it is important to understand that even the doctor cannot tell exactly what to expect. In fact, a person’s prognosis may change if the cancer progresses or if treatment is successful.

Seeking information about the prognosis is a personal decision. It is up to each patient to decide how much information he or she wants and how to deal with it.

Tuesday, December 9, 2008

Loved One's Decisions in Your Hands ?

The day I got the call about my father's cancer recurrence I wasn't planning on managing the future of another person. We had a difficult relationship early on after my mother's death in 1972 when I was 9 years old and he was suddenly a widower raising 4 children on his own. 

His grief and overwhelming responsibilities as a single dad crashed with my confusion and anger over my mother's death that led to a complete break down in our ability to communicate for many years. Our relationship was so strained and difficult that I was sent to a "boarding school" which was really a Catholic Convent at age 11 and from where I left to live in the US with relatives at age 16 and never to looked back.

Thankfully, after I became a mom and we both grew and matured spiritually, we were able to reconnect in the mid 90's and became great "friends" calling each other weekly and often exchanging long letters several pages long simply "catching up" and mending the emotional wounds and broken fences of my childhood and early adulthood without him by my choice. Soon enough I came to rely on his guidance, humor and emotional support as part of "sanity circle". When he was first diagnosed with Leiomyosarcoma in 1998 I sprung into action to "save" him from what I felt was a mediocre healthcare system in Puerto Rico. I had no idea what I was getting myself into but I was determined not to "walk away" again.

As luck would have it not knowing what I got myself into was a blessing in disguise and, at least for me and my father it was a very natural and loving transition in role reversal with me in the lead role of caregiver and decision maker. I think that time and geographical distance had healed the "conflicts" of our past and that the long winded letters and candid phone calls had eased us into a comfortable and relaxed camaderie that allowed us to be free from the complex dynamics of a power struggle for authority over life and death decision making. He got on a plane at my insistence and surrender his care into my hands seemingly without hesitation. We prayed on it together and even before we reached the hospital for his "second" opinion consult I was his healthcare proxy and held power of attorney over all his decisions but it isn't that easy and simple in most cases.
  • WORKING YOUR WAY THROUGH ~~ Few of us are prepared for the enourmous challenge of making choices for another adult. Unlike children, adults have their preferences, habits, and goals fairly well established, and they are notoriously resistant to giving up control. No matter how well we think know someone, there are all sorts of finishing touches he or she expects in personal grooming, doing the laundry, handling finances and especially at mealtime. It can seem like there are thousands of ways to do the simplest task wrong, and only one way to get it right.
The other side of the picture is this: that a person who has suddenly lost mental or physical capacity is often aware that something is wrong. Such a person is often anxious to regain control of the situation. Small matters that would have been irrelevant once are now highly significant. Being able to decide how far apart the drapes should be drawn looms large as a way to impress one's will upon the circumstances of his or her life once more. Respecting the dignity of our loved ones while choosing what's best for them can be a balancing act that demands constant adjustments to the relationship we had with them before the impairment.
  • THINGS ARE NOT THE SAME ~~ At first, I tried to behave exactly as I had before his diagnosis. But that was unlikely. He was my father and I had come to rely on him for guidance and advice. Obviously the terms of our relationship had changed and were now reversed. Me, the healthcare reform advocate with a perfect command of the english language and quite assertive when it come to dealing with medical providers and insurance companies, now his caregiver and decision making "director". He, the college professor, father, friend, intellectual and spiritual guide, now dependent upon my judgment for direction and survival ? A shift in power occurred.
Depending on the nature of your relationship in the past the new roles you will both play can be difficult to accept, painful to learn, and confusing to sort out. You may not be able to discuss this reality with your loved one because of a sudden onset of illness or disability. In some cases a progressive condition may lead up to a significant degree of disability we were not expecting or prepare for emotionally or intellectually to manage. But if you can have this conversation, it is a great gift to be able to talk about the shift and admit any discomfort you both feel about the strange new ground you find yourselves on. If such and understanding is beyond reach, it is necessary to acknowledge for yourself that the territory you are navigating is new and the rules have changed.
  • IT'S NOT ABOUT YOU ! ~~ Fear, confusion, and anger are emotions that frequently accompany a loss of ability to determine our own way in the world. Touching our mortal limits is a scary proposition in the best of times, as when we narrowly escape an accident or recover from an illness. But when there are long term or permanent changes in our ability to control our bodies or our lives, we express our anxiety by every means still available to us. Some people will retreat into silence or depression. Others will lose their temper often or burst into tears unexpectedly.
Some people, like me, confront the suffering of their loved ones by total involvement; others go into denial and simply vanish. Expect nothing and forgive everything. Most of us are not the heroes we'd like to be, and crisis exposes our weakness. A middle aged mand we met at the hospital after my father's cancer recurrence in 2006 took to blaming his wife for all manner of faults and difficulties inplementing the decisions she'd made on his behalf, including the nursing home she'd selected for his continuing care. Though she came to see him faithfully every day he found fault with her in all things big or small and questioned her loyalty.
  • A gentle woman of great religious conviction, she bore the insults patiently and commended his suffering and hers to God. She knew it was the cancer that was talking to her, not her husband, and his fear of death that forced him to howl out his rage in her presence. I admired her dignity and determination to hold on to the love and preserve the bows she took in the altar "to love, obey and honor till death do us part". I was very lucky my father was gentle God fearing man who gave me more love, support and understanding than I ever gave him during our final days together but you must be prepared to accept all possibilities in a personality shift during a significant medical crisis. Respecting the dignity of our loved ones while choosing what's best for them can be a balancing act that demands constant adjustments.
  • GET WHAT YOU NEED AND ASK FOR HELP ~~ You don't need legal permission to hire your mother/father a housekeeper or to stock your neighbor's refrigerator. But when it comes to money and health issues, you will need to have the proper documentation to deal with the bank and the doctors with full authority. In some states, power of attorney for health care had been separated out from the authority to make financial decisions, so you may need to notarize two different forms to insure that your loved one is represented in both ways.
It can be a good idea to appoint one family member to manage finances and another to confer with doctors. Taking your loved one to every medical appointment, running errands (the pharmacy, the supermarket, ect.) household chores and/or supervising home health aids not to mention caring for your loved one overnight and during weekends can be an exhausting business all it's own. If a family member (spouse, mother, father or sibbling) can navigate the social security application process to establish benefits (SSD, SSI, Medicare and/or Medicaid) and make sure the checkbook is balanced, the electric bill paid and the mortgage or rent covered that can be a tremendous relief.

There are plenty of ways to make use of outside assistance. Consider any proposal of help, however unexpected and unlikely it may seem. If you are lucky some family members will want to jump in with both feet and run household, at least in the beginning. This willingness to help may pass, so be prepared for volunteers to roll in and then recede or in extreme cases fade away until one by one they disappear. In my case I got very little help so I went online to websites offering advice, services, books or direction to agencies that could help. Some of these resources turned out to be wonderful. Others were less useful. When someone is ready to help, it's best to see what that person has to offer before you decide to reject assistance as a matter of course.
  • LET YOUR LOVED ONE DO WHAT IS POSSIBLE ~~ Mental and physical limitations aren't always absolute. Even someone suffering from paralysis and speech difficulties may be able to participate in simple decisions, like what should be included in the grocery list, the brand of soap preferred, or which pajamas to wear. I found that paring up the decision making process enabled my father to take a greater role in what would happen to him. Asking open ended questions --" what would you like for breakfast?" -- was confusing and caused stressed. So I learned to ask --"do you want oatmeal or eggs?" -- if he choose eggs then I could make another choice available to him --"scrambled or boiled?" --.
When we accept authority for decisions a loved one normally made alone, it's important to be aware of how much interest that person shows in the issues to be decided and proceed accordingly. Whenever possible and clinically sound defer to their preference and allow them to be actively involved in the discussion leading to the final decision made. Some people will give up command of domestic matters entirely without protest, but show concern for where the money is going. They may become apathetic during the long docto's conferences about the progress of their condition, but be acutely sensitive to a small loss of function. Yet others will want to have every medical detail explained. Listening, carefully, asking questions that can be answered with a simple yes or no, and patiently involving our dimished family member in the decision making process is the most loving and respectful thing we can do.
  • TAKE HEART ~~ When a loved one becomes impaired and needs our care and protection, we may be just as emotionally confused by the new terrain as they are, but with a little time to adjust, spiritual guidance and some outside support, we will find our footing. It may surprise you to learn that you are stronger, more resourceful and more capable of handling the new responsibilities than we thought possible. As Saint Paul said , love "bears all things, believes all things, hopes all things, endures all things. Love never ends" [Corinthians 13:7-8]
About the Author: Wilma Ariza is the Founder of Stevie JoEllie's Cancer Care Fund a thyroid cancer awareness, access to care and free supportive services for thyroid cancer patients and survivors nationwide. The nonprofit organization was born in honor of her daughter Stevie JoEllie diagnosed with Stage II Follicular Variant Papillary Carcinoma of the Thyroid in 2008 a few weeks after her 21st birthday.

Saturday, December 6, 2008

Finding Counseling and Support Groups in New Jersey

The words "you have cancer" or "your child has cancer" are frightening and overwhelming. It's important to remember that most people experience some kind of sadness or helplessness when confronted with cancer. Counseling and support groups may help you feel less afraid and allow you to focus on yourself and getting better.

There are many kinds of support groups and counseling available to you- whether you are a person with cancer, a caregiver, a friend or family member. Here are some questions to consider when you are looking for counseling or support group:

Do you prefer individual counseling or a support group?

You may be looking to speak one-on-one with a professional. There are oncology social workers, psychologists and psychiatrists to help you sort through your many complex emotions during this time. Gilda's Club provides free support groups accross the country and CancerCare provides individual counseling.

What kind of a support group would you prefer ?

Do you want to meet people face-to-face in your community at a scheduled time ? Would you prefer the anonymity of an online support group ? There are many different kinds of support groups to meet individual needs and preferences.

Would you benefit from a "buddy" program, where you can talk to someone who has had similar experience to you ?

These kinds of programs are generally not overseen by professionals but will connect you with peer support from someone who's been there. Immerman Angels is the best such program I know about.

What is the difference between peer-to-peer support and professional counseling?

Just because you and another person have the same type of cancer doesn't mean that your experiences will be exactly the same. In peer-to-peer support, you listen to other people's experiences and share your own.

Professional counseling concentrates on your individual situation, taking into account your whole life. In a way, professionally or volunteer moderated support groups, like those run by Gilda's Clubs are the best of both worlds." You can still learn about others in a similar situation, but the professional helps you apply what you have learned to your particular situation.

How do you find the right support group ?
  • Many hospitals and local treatment centers provide face-to-face support groups. Check the schedule to see if one works with your or your loved one's treatment schedule.

  • Talk to your doctor or nurse about your feelings. Doctors understand better than ever before that patients are concerned about good quality of life as they go through treatment and they can provide referrals for counseling or suggest medicines for anxiety and depression if necessary.

  • Gilda's Clubs accross the country provide free support groups for everyone affected by cancer - patient, caregiver, friend, family, survivors. Look up a local chapter in your area.

  • CancerCare provides free face to face, telephone and online support moderated by professional oncology social workers.

  • The NJ Self Help Clearinghouse is another source of guidance for your support group needs relevant to cancer or any other healthcare or dissability issue.

Wednesday, December 3, 2008

Pediatric Thyroid Cancer Overview

Thyroid cancer occurs in all age groups, from children and adolescents through seniors but remains a rare disease in children less than age 10, with an annual incidence of less than one per million. It is more common in older children and adolescents, with 15.4 cases per million per year in 15-19 year olds. It has a peak incidence at age 50 and beyond.

The number of female adolescents with thyroid cancer has slightly increased in the United States in recent years. Males and young children under age 15 have had no increase in incidence over the last several decades.

The two main types of pediatric thyroid cancer are:

(1) Differentiated Thyroid Cancer: This includes papillary and follicular thyroid cancer and their variants. Papillary thyroid cancer is the most common type in both children and adults.

(2) Medullary Thyroid Cancer: About 30% to 35% are familial tumors transmitted by a gene from either the mother or father.

More About Differentiated Pediatric Thyroid Cancer:

I. Papillary and Follicular
  • Because of the lack of prospective research, differentiated thyroid cancer in children and adolescents generally is managed similarly to that in adults. Papillary thyroid cancer is the type of tumor that affects children in the vast majority of cases and which, compared with other types of thyroid cancer, has the best prognosis.

  • Each case is approached individually, to fit the needs of each patient. In children and adolescents, papillary thyroid cancer tends to be more advanced at the time of diagnosis than it is in adults with the same disease.
  • The majority of children with papillary thyroid cancer have local spread to the lymph nodes of the neck at the time the thyroid cancer is diagnosed. About 10% to 20% of the children have distant metastases, most commonly to the lung, compared with only 5% of the adults with this disease.
  • Recurrence of papillary thyroid cancer is more common in children than it is in adults. However, despite higher rates of recurrence and more widespread disease at presentation, the prognosis is excellent with appropriate treatment.
  • Follicular thyroid cancer, which is rare in children, has been reported to demonstrate more aggressive characteristics and poorer prognosis due to vascular invasion. Still, the prognosis is better for children than for their adult counterparts who present with a similar extent of disease.

II Follicular Thyroid Cancer.
  • Follicular thyroid cancer is not very common in childhood. The primary tumor is usually a single lesion within the thyroid gland. Lymph node metastases can occur with less differentiated variants of follicular thyroid cancer but are not generally expected.

  • It is associated with a worse prognosis (as compared to papillary thyroid carcinoma) due to its propensity for vascular invasion, which increases the risk of metastases to distant sites of the body, such as the lungs and bones.

  • Very few children die from this disease. Even those children with distant metastases at diagnosis can anticipate survival for years to decades. The goals of treatment are to eliminate the disease and to reduce the chance of recurrence. Sometimes the disease cannot be entirely eradicated, and therefore, another therapeutic goal is to achieve stable disease and no symptoms of disease.
Statistics on Differentiated Pediatric Thyroid Cancer:
  • Papillary and follicular thyroid cancer accounts for only approximately 1% of all pediatric cancers in the 5-9 year old age group and up to 7% of cancers in the 15-19 year old age group. Only 1 in a million children younger than age 10 years will get thyroid cancer.
  • In children under age 10, thyroid cancer tends to affect boys and girls with about equal frequency, but thereafter it generally becomes more common in girls. The ratio of girls to boys with differentiated thyroid cancer reaches a peak of over 5 to 1 in the 15-to-20 year-old age group.
  • Medullary thyroid carcinoma (MTC) accounts for 5% to 10% of all thyroid cancers. In children and adolescents, it is a very rare disease, affecting less than one child per million per year.

Pediatric Thyroid Cancer Causes

As the National Cancer Institute notes, no one knows the exact causes of thyroid cancer. Doctors can seldom explain why one person gets this disease and another does not. Research has shown that people with certain risk factors are more likely than others to develop thyroid cancer.

The following risk factors are associated with an increased chance of developing pediatric Thyroid Cancer:
  • For differentiated thyroid cancer, a risk factor is exposure at a young age to ionizing radiation, whether from ingestion of radioactive iodines (iodine is the building block of thyroid hormones) or external radiation, as used to treat some childhood cancers. The main example of this was the increased rate of thyroid cancer identified in children following the 1986 Chernobyl nuclear power plant accident.

  • In general, the differentiated thyroid carcinomas are not diseases that are passed from one generation to the next. However, there are some hereditary forms of the disease, although the exact cause of the disease in these families is not yet known. Some genetic syndromes such as Gardner syndrome and the Carney complex can have papillary thyroid carcinoma as part of the spectrum of disease.
  • Some follicular thyroid carcinomas can be associated with a mutation in the PTEN gene, which causes Cowden syndrome. Gene mutations (RET/PTC, BRAF, among others) that cause differentiated thyroid cancer have also been identified within tumor cells. These mutations are not in all cells of the body and therefore are not expected to be hereditary.
  • In children and adolescents, medullary thyroid cancer is almost always the familial form, meaning that it is due to a specific mutation (defect) in the DNA of the cells of the body. This mutation occurs in a gene called the RET proto-oncogene.

Monday, December 1, 2008

Emotional Effects of Cancer

A diagnosis of cancer is a devastating experience for most people. Cancer affects a person’s family and friends as well as the person with the illness. When a person is first told that they – or someone close to them – have cancer they may feel shocked, numb, and unable to believe what is happening or to feel any emotion. Some people feel as though the situation is happening to someone else, as though they are watching themselves from the outside.

At first you may find that all you can take in is the fact that you or someone close to you has cancer. Often people say that once they‘d been told that they have cancer they did not hear the rest of the conversation at all. One person who had just been diagnosed said 'the doctor's lips were moving, but I couldn't hear any sound coming out'. You may feel panicky and may have some very real physical symptoms of stress, anxiety and depression associated with a potentially fatal and always life altering clinical diagnosis.

You might also find that you can take in only a small amount of information and so you have to keep asking the same questions over and over again. You may need to be told the same bits of information repeatedly. This is a common reaction to shock. Some people find their feelings of disbelief make it hard for them to talk about their illness with their family and friends. Other people feel an overwhelming urge to discuss it with everyone.

Everyone has their own experience of the cancer and how it affects their lives. The diagnosis and treatment may make you feel a range of strong emotions, such as fear, anger, sadness or depression. These emotions can be frightening and difficult to deal with. Over time they generally get easier to cope with, but you often need time to be sad and to reflect before you can adjust to your situation and begin to cope with life again.

Even when you have finished your treatment you may find it difficult to return to your old life. Some people find that the emotions and feelings do not get easier to deal with, and you may need help in learning to cope with them. There are many ways of managing the emotions and feelings that cancer can cause. If you are very worried about your cancer or are depressed, it can be well worth taking steps to find help. Talking things through with a friend or a professionally trained person, learning to relax, or having complementary therapy can help you to feel much better, even if it can't change your situation.

Join Our Facebook Community: http://www,

Sunday, November 30, 2008

Stevie JoEllie's Cancer Care Fund Partners with

For Immediate Release
Clifton, New Jersey
November 30, 2008

Stevie JoEllie's Cancer Care Fund Partners with

Stevie JoEllie's Cancer Care Fund is dedicated to it's fundamental mission of thyroid cancer awareness, access to care and free supportive services for thyroid cancer patients and survivors nationwide. As a 100% volunteer led organization the most important resource we have is people – those whom we serve and all of us who work, who invest in and who care about our growing community of thyroid cancer patients and survivors nationwide.

Stevie JoEllie's Cancer Care Fund has teamed with to introduce a revolutionary new way raise funds to support and achieve our mission.

Do you or someone you know shop online?

Now you have a way to get the best price for items you already purchase, receiving cash back on those purchases, and support our organization at no cost to you. By joining forces with GreenBackStreet we can now offer this cash back rewards program to you through the Cash Back Mall. Shop at any of the Mall’s more than 1,100 stores including:

To start receiving cash back on your purchases all you need is 30 seconds, your contact information, a valid email address and this website: 

Thank you for your continued support and we hope you enjoy your free cash back shopping experience.

Stevie JoEllie's Cancer Care Fund is working to develop and launch an access to care grant program for thyroid cancer patients and survivors nationwide that includes a set aside fund to assist thyroid cancer survivors with medical costs associated with follow up treatment, annual exams,  diagnostics and medications. 

Thursday, November 27, 2008

Supportive Services Available for Cancer Patients

When you or a loved one is facing cancer, many issues, decisions and difficulties arise. There are support services to help you deal with many of these problems. The first step is learning about the types of services available.

What kind of help can you get ?

  • General Information: Many cancer organizations provide a wide range of information on different types of cancer, as well as information on treatment decisions, clinical trials and side effects management.

  • Emotional Support: Cancer can make you feel lonely, scared or distressed. Counseling, support groups, patient to patient networks, and other types of support are available to help you cope with these emotions.

  • Financial Needs: There are companies and organizations that help cancer patients with medical billing, insurance coverage and reimbursement.

  • Transportation Needs: Many people have trouble getting to medical appointments during and after treatment. In many communities, transportation services are available to help you.

  • Housing / Lodging: Some organizations provide lodging for families of a patient undergoing treatment, especially if the patient is a child or a teenager.

  • Children's Services: There are organizations that provide services for children with cancer or children who have a family member with cancer, including counseling, summer camps and "make a wish" programs.

  • Home Health Care / Hospice: Home health care is for patients who no longer need to be in the hospital, but still require skilled nursing care at home. Hospice care focuses on the special needs of terminally ill patients.
For more information please visit our website or email

Monday, November 24, 2008

Cancer: Sharing Your Diagnosis At Work

Deciding to tell your colleagues and your boss about your thyroid cancer can be a challenge. Learn when and how to share your diagnosis with those at work.

Once you and your medical team decide on your thyroid cancer treatment, you will have an idea of how much time you might need off from work and which side effects could mean missed hours here and there. Fatigue might leave you with less energy on a daily basis for a few weeks; irritability and cramps can result from your synthetic hormone treatment while the best dosage is being determined. Talking honestly with your employer about these possibilities can make it easier for you to adjust your work schedule, if the need arises.
Thyroid Cancer at Work: Your Medical Leave Rights
Depending on the company you work for and its policies and attitudes, you may find the flexibility you need — or not. You have the most protection against any kind of discrimination if you work somewhere that has 50 or more employees, says Greta E. Greer, MSW, LCSW, director of survivor services for the American Cancer Society, because such workplaces must abide by the federal government’s Family and Medical Leave Act (FMLA) passed in 1993.
“If you’re protected by FMLA, then you can expect that your employer will make reasonable accommodations if, for instance, you need flex time while you are receiving radiation treatments for your thyroid cancer,” she says. At the heart of FMLA is the provision that an eligible employee can take up to 12 weeks of unpaid, job-protected leave in a 12-month period for a medical reason such as cancer.
“If you’re employed by a small business, you may have less job protection,” Greer says. “Still, it’s hard to imagine that in this day and time, an employer would fire you over a cancer diagnosis, especially if you’re just going to be out a few days for thyroid cancer surgery,” she notes.
Even smaller workplaces — those with at least 15 employees — are legally bound to follow the terms of the Americans with Disabilities Act (ADA) and not discriminate against employees on the basis of their physical limitations. In many cases, cancer may not be thought of as a disability. Nevertheless, if your cancer or the side effects of your treatment lead to lasting difficulty carrying out activities of daily living (bathing, dressing, grooming, household tasks, and the like), then the protection afforded by the ADA does apply to you.
Thyroid Cancer and Work: Getting Good Counsel
There are many different variables that will affect whether and how you tell your boss about your thyroid cancer diagnosis. Fortunately, there are also many resources you can turn to for advice on your specific situation.
“Call the American Cancer Society toll-free number, 1-800-ACS-2345, any time with questions,” Greer urges. Cancer information specialists are available 24 hours a day to provide guidance about employment and any other issues related to cancer. 
If you need to consult an attorney who specializes in employment issues, contact your local bar association; these groups often provide legal referral services, sometimes at no cost.
Thyroid Cancer and Work: An Employee Perspective
Marcella Reed (not her real name), a 36-year-old attorney who works for the federal government in Washington, D.C., was treated for papillary thyroid cancer five years ago. She feels fortunate that she “didn’t have to worry about job security. But for privacy reasons, I didn’t want the entire workplace to know. After the diagnosis was confirmed and I knew what the treatment would be, I notified the absolute minimum number of people at work, those who had to know why I would be gone from the office for one week and then another,” she recalls.
A major reason Reed kept her diagnosis quiet was that she didn’t want her thyroid cancer to alter “the perception others had of my fitness and health,” she explains. In a competitive work environment, cancer can be seen as a liability, even if termination is not a concern.
Thyroid Cancer and Work: An Employer Perspective
Carl (not his real name) is a manager at a major insurance firm on Long Island, N.Y., whose administrative assistant was treated for thyroid cancer two years ago. The assistant was away from work for about four weeks after surgery and radioactive iodine therapy. “She told me that she would probably be quite moody until her [synthetic thyroid hormone] dose was properly regulated, and I understood," Carl recalls. "She was very tired, too, in the weeks after she first returned."
Carl appreciated this level of communication and the fact that his employee made weekday doctor's appointments in the morning or late afternoon to avoid missing a lot of work. "She also told me about them as far in advance as she could, so we could have someone to cover her phone," he adds. "A little consideration goes a long way from the perspective of both the person who has cancer and the one who works with him or her.”
If, after weighing your options, you decide to share your thyroid cancer diagnosis with your employer, consider doing so early in the course of your treatment. That way, you'll be able to devote your energy to getting better.
Last Updated: 05/14/2009

Friday, November 21, 2008

Helping Your Doctor Help You !

The medical profession must rely on the information we as patients provide them  with to help guide our possible diagnosis, necessary diagnostic testing, treatment options and care. It is important that you communicate as clearly and as honestly as possible with your healthcare team at all times.

Doctors need your full medical history as well your family medical history because some thyroid cancers have a familial or genetic link. Some medications you are currently taking may interfere with your treatment and more. Sadly, what you don't share with  your doctor may be as just as important, or even more important, than what you do tell him or her.

Sometimes we fail to share important information about alternative therapies or natural supplements we are currently taking for other medical conditions, or we are not completely honest  about our illness onset, signs, symptoms or medication and treatment side effects because we don't realize they are very important to the doctors' ability to help us.

Here are some tips on how to best help your doctor help you!

1. Pay attention to your presenting sign(s) and symptom(s). Pay attention to the location, duration, and character of the discomfort. Also record what brings the symptom(s) on, what relieves them, and what makes them worse.

2. List past and current medical diagnosis such as other malignancies, renal failure, hypertension, heart failure, or diabetes.

3. List past surgeries, diagnostic procedures (mammogram, chest X-rays, CT scans, etc.), and hospitalizations. Bring all diagnostic films, clinical and hospitalization records, and procedure reports if you have.

4. List all medications and their dosing information. You should include all prescription and over-the-counter medications, dietary supplements, herbs, and vitamins. If you have any questions about the medications you are taking, bring the medications with you to show your physician.

5. List all drug and food allergies if you have. Describe the detailed symptom(s) (skin rash, edema, etc.) of the allergy to your physician.

If you are not sure about something talk it over with our healthcare team --there is never a stupid question or concern when it comes to your medical treatment.

Tuesday, November 18, 2008

Regaining Control After A Cancer Diagnosis

Loss of control is a common feeling for cancer patients. A cancer diagnosis presents many challenges for you and your loved ones. Most aspects of your life are going to be temporarily interrupted or disurpted.

At first, most people diagnosed with cancer will need some time to adjust to the news, think twice about what is most important in their lives, and find support from loved ones.

For many, this time is a very difficult one, full of emotion - feelings such as disbelief, shock, fear, guilt, and anger are all normal. These feelings use up a lot of mental energy, which can make it hard to absorb and understand all of the medical information being given to you. It will probably take some time for you to come to terms with your diagnosis and treatment plan, both physically and emotionally digesting the long term implications for your health and ultimately your life.

People with cancer may feel disconnected from their bodies and may be less in control of it's functions. Tending to your medical care disrupts usual routines. The side effects of treatment (fatigue, post surgical pain, altered taste, dry mouth, nausea, weight loss or weight gain among others) may affect your ability to socialize and participate in your usual activities of daily living. Try to remind yourself that many of these disruptions are temporary and will fade into memory in due time.

Asking questions about your diagnosis may help you to feel more in control. Some questions to ask might be:

  • What is my diagnosis exactly ? What type of cancer do I have ? What stage ?
  • What is the standard of care for this condition ? What treatment do you recommend for me ?
  • Are there other treatment alternatives ?
  • What are the benefits of these treatments vs my recommended treatment plan ?
  • What are the risks of my treatment plan ? What are the alternative treatment option risks ?
  • What medicines can I expect to take and why ?
  • What medicines are you giving me now ? What for ?
  • How should I expect to feel during treatment ?
  • What side effects, if any, can I expect to have ?
  • What can be done about side effects ?
Bring your notes with you to appointments to help you remember what you wanted to ask or tell your provider. When you get instructions from your provider, write them down. Ask for information in writting if possible. Make sure you understand them before you leave the office. Then follow them exactly. You may also want to keep written notes on any health questions and concerns you may have.

Saturday, November 15, 2008

Living With Cancer One Day at a Time

Today may be the first day you've had to live with the diagnosis of cancer, or it may be one of the many days you have "survived" this disease. Either way, you probably found out that cancer has changed your life in significant ways.

You must cope with changes in your emotions, your health, your body image, your support system, your whole outlook life! Yet, just as cancer has changed your life, the way you live your life can change your cancer - from a monstrous threat to a manageable condition.


Medical advances are leading to new cancer treatments every day. Even with promising breakthroughs, however, cancer is often a chronic illness-- or at least the fear of recurrence is always there. Cancer is something you may have to live with for a very long time. This CareNote offers insights from courageous cancer survivors to help you live with cancer one day at a time.

  • Build a support team. If your diagnosis of cancer is fairly new, the shock of it may leave you emotionally shaky. Ironically, this can be a time when family and friends find it hard to understand your struggles. They may not know what to say or how to react to your intense emotions. In their confusion they may even avoid you.
Feeling alienated from others during this time is common, but now is not the time to go it alone. Try to remember that your loved ones emotional equilibrium has been shaken too. Maybe they just don't know how to comfort you. Maybe they don't want to face their own fears about losing you.

Communicating your needs and desires to family and friends can be painstaking work. If you've talked and you're still not feeling "heard" try putting your thoughts in a letter. Often just writting about your frustrations can provide relief. A support group of others with cancer can be a great source of comfort and practical advice. Your local newspaper, hospital, or cancer society are good places to start looking for such a group.
  • Use anger to your advantage: Anger, or even rage, is a "healthy reaction" the mourning that comes with any serious illness. And as uncomfortable as it may feel, anger can become one of your best assets in your battle.
A radiology technician I know says he can predict which cancer patients are going to survive by observing them during their radiation treatment. He says a person's will to fight is almost more important than his or her medical prognosis. He also notes that those who appear most angry, ironically, seem to have the best chance at recovery.

After a biopsy revealed malignancy in both her breasts, Laura remembers her despair. "All I could think was that I wouldn't be able to see my little grandson grow up," she says. "Then my reaction changed to "I am going to see Brett grow up!" That was seven years ago. Now Laura and her husband look forward to many more years of enjoying life and their grandson.

A fighting spirit does not guarantee a cure. But if you are struggling to overcome your anger, maybe it's time to channel it into your fight for survival instead. A mental health professional or pastoral care counselor can help you learn how to use all your emotions to your advantange.
  • Make plans. As cancer patients wrestle against the personal threat that the illness presents, life may seem to stand still for them and their loved ones. Others continue to go to school, change jobs, have babies, take vacations. But with tentative feelings about the future, those striken with cancer may stop living their lives fully. They may even unconsciously give up.
"Without making plans for a dinner party, a movie night out, or that family reunion, I had nothing to look forward to," says Pete of the darknest time during his chemotherapy for bladder cancer. "Finally I realized that although I was physically and mentally slower, I was able to do many of the things I loved doing before. Making plans gave me a sense of control and hope about my future."

If you haven't set goals lately, do it now. Writte down some short-term and longer-range plans. If you've always wanted to learn how to paint, why not investigate that watercolor class today?

When Laura was faced with her mortality, it prompted her to try new things. She and her husband have traveled extensively since her surgery. She also learned how to use a computer and fulfilled her ambition of becoming a published writter. "Since that time, I've done some of the most exciting and creative things in my life," she says.
  • Survive what is merely survivable: Before your cancer diagnosis, you may have had an idealistic vision of how you would handle such a crisis. When faced with the challenge of cancer treatment, you may have resolved not merely to endure, but somehow to breeze through it. Cancer is an awful disease. It's treatments can be wretched.
If you are just getting into the active phase of therapy, seasoned cancer patients urge you to do only what is necessary to get by; if keeping a positive outlook seems too taxing during the worst of your medical care, give yourself permission to just "be."
  • Forgive yourself. Perhaps treatments are just an unpleasant memory but you still wince when you remember your behavior during that ordeal. Or maybe you are feeling responsible for becoming ill in the first place.
If you are displeased with the way you dealt with the past, talk with loved ones and/or your healthcare professional team. They may be able to give you a more realistic appraisal. Remember, you wouldn't be reading this now if you were not a survivor.

If you have endured surgery, chemotherapy or radiation therapy, large doses of supportive medications, biologics, immunosuppresive therapy or hormone replacement therapy you have a lot to be proud of. This is a good time to forgive yourself for being human.
  • Reduce your stress levels: Pshychoneuroimmunology is becoming a part of many medical treatments these days. Though the word is scary, the concept is simple. It refers to the new scientific field that studies how the mind and emotions affect the physical being.
Studies have shown that stress, from whatever source, has a detrimental effect on the immune system. Your best chance of improving your quality of life is by reducing all your areas of stress.

Some people find self-hypnosis, guided imagery or exercise helpful in relaxing. Others feel energized when they devote to being of service to those around them. Still others find a consistent program of spiritual meditation or reading gives their lives emotional balance.
  • Realize how scary recovery can be. "You are in remission." Since your diagnosis, you've longed to hear these words. But when the final chemotherapy round is completed and your last doctor visit is scheduled, don't be surprised if you are again flooded with strange feeligns.
During treatment, you teamed up with doctors, nurses, therapists, and friends who ministered to your physical and emotional needs. Suddenly this army of cancer fighters begins to disarm and maybe even disband. If you're feeling abandoned by your support system, take heart.

When you go into remission, it's natural to experience a sense of loss. One more time you are redifining your role as a patient. Though you will be forever changed by your experiences with this illness, remission is a time to gather your forces and learn a new identity. You are no longer a cancer patient, you are a cancer survivor !

TAKE HEART: On your journey through the experience of cancer, you will inevitably have times when you feel you don't have even an ounce of strength left to get yourself through the ordeals of that day. When that happens, go ahead and give it all up -- to the faithful God who walks beside you every step of the way. God will give you the strength you need to get through that day....and the next...and the next....and the next.

About the Author: Claire Bradshaw is a registered nurse and free-lance writter who regularly writes about medical and mental health issues.