Compliments of the Medicine On Line CancerForum

 

MOLERS NEWS

 

 

 

I have NSCLC (type: Broncho Alveolar)
diagnosed 9/2/97.  They gave me 6 mos. to a year to live after surgery in 10/97. They found it in a lymph node aside from rt. lung and because of markings in my left lung (that never had a biopsy) they assume it is there;also-they stopped the surgery. Anyway, I had Chemo from Nov. thru Jan.1998. There was no change and I had almost dropped dead partly because I have emphysema also, I decided to go without Chemo and live out my 6 mos.to a year without feeling sick and my plan was to take pain killers when the pain came.

I left Sloan and moved to an Oncologist on Long Island near where I live. I told him my plan and he said fine and suggested that when the pain starts I take a low dose maintenance type Chemo to keep the pain away - so that's a possibility in the future.

In the meantime I heard about Staten Island Univ. Hosp. I went there in Sept. of '98 and had 5 treatments in the rt. lung Stereotactic body radio surgery. The tumor was down to 1/2 it's size in January of 1998.

I have a Lung CT Scan every 3 mos. and so far it hasn't grown. I am due for a CT Scan at the end of Sept. here on Long Island and then the films are mailed to Staten Island and I will get an answer back in the 1st week of October. The doctor there said if it starts to grow again in the same spot they can do it again in the same spot. If it grows elsewhere, depending on where, they can radiate that.

I also am aware that only about 3% of people make it with this type of cancer past 5 years unless of course they caught it at Stage 1, well mine is Stage IV.

I have come to terms with God. If He decides that if I am needed elsewhere, no amount of anything will keep me here. Once I came to terms with that, which took a couple of months, things got a whole lot easier.So far so good, I work full-time and go to a cardio karate class 3 times a week. I was in a 3 1/2 mile walk/run at Jones Beach for my company recently and I finished the race in 62 minutes which was decent. I take several vitamins per day, as a matter of fact I have an appointment today to see a Chinese herbalist in Flushing recommended by one of the molers. The vitamins, because of taking so many, really are affecting my stomach. I am hoping I can get a powder or liquid made that encompasses a lot of what I use and maybe it will be easier to digest. I also eat a special made soup 4 days a week for lunch that is recommended by a Ph.D.. that deals with cancer. I have recipe if you want. I also go to a Hypnotherapist twice a month for relaxation. Fortunately I am a member of AA and go to meetings twice a week where I have always received support no matter what the problem.
So, take some deep breaths and take all the suggestions that people will share with you and do what your heart says. Everyone is different. As hard as it can be at times, please try to find the positive,     love June
                 

 

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MARTY AND THE LOVE OF HIS LIFE BARB!

by Marty Auslander

I am a caregiver, a husband, of; a woman who close to four years ago was diagnosed with a rare form of cancer.    She was in a place where most every oncologist we saw for consultation misdiagnosed and they never agreed with any of the other physicians as to the diagnosis and type of treatment.  So, began our journey, a journey in which our way of living came to a halt.  It was our wellness journey and one in which was, indeed, welcome and needed.   One in which we will proceed with even in the maintenance, of present good health.   It is now a lifestyle that we believe was a signal, a message, that we now welcome as we find that our life, and the support we receive is Godly, goodly and filled with love for each other as well as the great gift of love from so many.  Now in that four years I had to learn what it meant and what it means to be a caregiver.  Married for twenty-five years at the time, we have no children; but ourselves as partners in business and in marriage.  Barb, my wife is a negative person and I am a positive person.   We are very different in complexity, emotions and attitudes.  So, when she was diagnosed, her belief in living was very short term, my belief was stressful and panicky; but dedicated.  Barbs dedication to live came some time later, after she had addressed the many negative emotions and saw that there was HOPE AND A WAY TO LIVE.    I have learned this, which I wish to share with you as I am hoping that whatever I say here will be a message to all caregivers that there are many ways for us as caregivers to support our loved one, the   survivor, to be determined to beat this disease of cancer in any form.  In that period I read many books, we attended support groups where we experienced the importance of these sessions as we became educated and informed about cancer. where to find monetary help. to learn the importance of second opinions, to read about those books that provided us with comprehensive educational program that started with HOPE, and to learn about the myths of cancer, that the medical community has been very progressive in finding may treatments to establish longevity and the knowledge that was acquired about both conventional and alternative methods including stress management which was so vital in my wife's progress to recovery and to me to stay calm and seek the methods of medication and imagery that supported our road to recovery further.

 

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QUESTIONS TO ASK YOUR HEALTH CARE TEAM

Communicating effectively with your health care team is crucial in being informed about the diagnosis of your disease.  Don't be afraid to ask questions or get a second opinion.  You may want to bring a friend, a caregiver, a relative with you to help you remember questions and answers and to make notes.  Or, you could bring a tape recorder with you during these consultations and sessions with your doctor.

It is also important to get your healthcare team to treat you as a whole person, not just cells inside a body.  Let the team know about what you do for a living, your family situation, your future goals or plans.  Be sure to discuss what impact treatments may have on your life.

There are many specific questions about certain diseases; however, below are listed suggestions for general questions you should ask at the time of your diagnosis and follow-up sessions, and questions about continuing care.

 

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QUESTIONS TO ASK ABOUT THE DIAGNOSIS

What is my diagnosis?   What is the stage of the disease?  Is it localized?  Is it extended around an organ?  Has it spread?  Is my condition genetic?  Is the diagnosis uncertain?  What should I tell my family and children?  Where can I go for counseling?

 

 

QUESTIONS TO ASK ABOUT TREATMENT OPTIONS

What are my treatment choices, which do you recommend for me and why? How, where, when and how often will treatment be given? What are my treatment choices, which do you recommend for me and why? How, where, when and how often will treatment be given? What is the goal of treatment-cure or control of my symptoms? Is the treatment experimental, controversial or risky? What are all of the possible side effects? Are there safe and effective treatments to control these side effects? How much time may I take to weigh my treatment options without harming my chances for recovery? What happens if I skip one or more treatment sessions due to side effects or scheduling problems? How will I know if the treatment is working? How long will treatment last? What are the names of the drugs I will take? May I drink alcoholic beverages? Are there any special foods I should or should not eat? Will I have to change my normal activities? Will I be able to have children after treatment? Are there options to preserve my fertility prior to treatment? What are some signs of infection that may occur during treatment? Would this treatment aggravate or intensify any medical condition I already have? Will there be interactions with other medications I am taking? Does my age influence the side effects? Since my mouth may be affected by treatment, should I see a dentist before starting treatment? Will the treatment affect me emotionally or sexually? What will happen if I decide to do nothing? Are there other options offered elsewhere? When treatments are completed, how often would I need to see you? Will other therapies be needed? Will the disease or treatment affect my ability to work or care for my family? Will my insurance or managed care plan cover all of the costs of treatment?

 

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FINANCIAL ASSISTANCE FOR CANCER CARE:

Cancer imposes heavy economic burdens on both patients and their families. For many people, a portion of medical expenses is paid by their health insurance plan. For individuals who do not have health insurance or who need financial assistance to cover health care costs, resources are available, including Government-sponsored programs and services supported by voluntary organizations.

Cancer patients and their families should discuss any concerns they may have about health care costs with their physician, medical social worker, or the business office of their hospital or clinic.

Social Security Administration (SSA) is the Government agency that oversees Social Security, Supplemental Security Income, and Medicare. A description of each of these programs follows. More information about these and other SSA programs is available by calling the toll-free number listed below. Spanish-speaking staff are available. Telephone: 1-800-772-1213 TTY: 1-800-325-0778

Social Security Administration (SSA) is the Government agency that oversees Social Security, Supplemental Security Income, and Medicare. A description of each of these programs follows. More information about these and other SSA programs is available by calling the toll-free number listed below. Spanish-speaking staff are available. Telephone: 1-800-772-1213 TTY: 1-800-325-0778

Social Security provides a monthly income for eligible elderly and disabled individuals. Information on eligibility, coverage, and how to apply for benefits is available from the Social Security Administration. Web site: http://www.ssa.gov/SSA_Home.html

Supplemental Security Income (SSI) supplements Social Security payments for individuals who have certain income and resource levels. SSI is administered by the Social Security Administration. Information on eligibility, coverage, and how to file a claim is available from the Social Security Administration. Web site: http://www.ssa.gov/SSA_Home.html

Medicare is a Federal health insurance program for those who receive Social Security benefits. Eligible individuals include those who are 65 or older, people of any age with permanent kidney failure, and disabled people under age 65 who have received Social Security payments for at least 24 months. To receive information on eligibility, explanations of coverage, and to enroll, call the Social Security Administration. Some publications are available in Spanish. Web site: http://www.medicare.gov

Medicaid (Medical Assistance) provides health insurance for low income and poor people who are elderly, blind, or disabled as well as for certain groups of children. Services are coordinated by state or local government through the Department of Social Services or the Social Security Administration. Check the local telephone directory for the number to call. Spanish-speaking staff are available in some offices. Web site: http://www.hcfa.gov/medicaid/mcaicnsm.htm

General Assistance programs provide food, housing, prescription drugs, and other medical expenses for those who are not eligible for other programs. Funds are often limited. Information can be obtained by contacting your state or local Department of Social Services; this number is found in the local telephone directory.

Veterans Benefits: Eligible veterans and their dependents may receive cancer treatment at a Veterans Administration Medical Center. Treatment for service-connected conditions is provided, and treatment for other conditions may be available based on the veteran's financial need. Some publications are available in Spanish. Spanish-speaking staff are available in some offices. Telephone: 1-800-827-1000 Web site: http://www.va.gov/benefits.htm

Hill-Burton is a program through which hospitals receive construction funds from the Federal Government. Hospitals that receive Hill-Burton funds are required by law to provide some services to people who cannot afford to pay for their hospitalization. A brochure about the program is available in Spanish. Telephone: 1-800-638-0742 Web site: http://www.hrsa.dhhs.gov/osp/dfcr/obtain/consfaq.htm

Income Tax Deductions:

Transportation: There are nonprofit organizations that arrange free or reduced cost air transportation for cancer patients going to or from cancer treatment centers. Financial need is not always a requirement. To find out about these programs talk with a medical social worker. Ground transportation services may be offered or mileage reimbursed through the local ACS or your state or local Department of Social Services.

Fundraising is another mechanism to consider. Some patients find that friends, family, and community members are willing to contribute financially if they are aware of a difficult situation. Contact your local library for information about how to organize fundraising efforts.

Community voluntary agencies and service organizations such as the Salvation Army, Lutheran Social Services, Jewish Social Services, Catholic Charities, and the Lions Club may offer help. These organizations are listed in your local phone directory. Some churches and synagogues may provide financial help or services to their members.

 

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Excitement Brews! 

For some of our Molers.  A wave of joy will soon pass over them in the form of new life. Five babies will be presenting themselves to their families and to the Molers Family.

P.J. will be a mother before long, this will be their second child. June, is a grandmother again, making this grandchild number four. Frank, will be a grandfather, making this grandchild number four and Lillian will be a grandmother, making this grandchild number nine & ten.

Congratulations to all those that will have little ones to hug and hold.  They  will have lots of aunts and uncles who will want to  love them from afar, keeping them in our prayers and hearts.

 

Isabella   Jessica Rose  Michayla  Isabella  Sidney Bailey 

 

 

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WELCOME NEW MOLERS   

We are pleased to announce some of our new Molers and to welcome them to our wonderful forum. Linda, Diane, Gwen, Olivia, Dale, Mary, LaVerne, Jane, Kathie, Judy, Dusti, Connie, Christie, Christopher, Charlotte,Ginny, Paula, Lucas, Jaume, Ira,Lori, Marian, David, JoyAnn, Deb, Stacie, Gail, Laurie, Lisa, Donna, Sam, Francisco,Nancy, Laura, Maria Lusia, Gill, Donna, Brandi,Nick, Bridget,Sylvia, Andy, Rhonda, Madge, Arlene, Scotty, Miriam, Kathy Q., Marlene, JoAnn, Kathryn,Frank, Jeanie, Lisa, Maureen and Pat. Welcome new friends!  

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                             Diane              Bess and husband Tom    Kathy

 

 

 

We love our Caregivers !

 

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