myTemplate

A Real World Template Design for Joomla

Google Search

Webwomens-wellness.com

Login Form



About Womens Wellness
About

This site is a family collaboration and our approach toward family healing and support. I am Karen Patterson, a former Technology Coordinator for an elementary school in South Carolina, and was diagnosed with breast cancer in January, of 1997. My husband, Harry Patterson, developed Vision Technology Management, LLC which hosts web services and web development. He registered a domain, developed the concept, and hosted the site for Women's Wellness. Drew Patterson, a 14 year old freshmen at the time helped out as the Webmaster. The reflections come from a book my sister in law started for me in February of 1997. I added some thoughts to the book and it has been a source of comfort and release. This is truly a family effort because a huge part of individual wellness is family wellness. They deal with this tragedy everyday also. Our site will strive to reach the families and offer what support we can. I'm grateful beyond belief for the family support I get.

We are not
just body parts,
We have
good minds.

Chronology:

  • Detection of a lump with pain in May 1996
  • Dr. diagnosed as cyst and told not to worry May 1996
  • Lump grew and pain changed
  • Read article in Dec. 1996 about cyst vs. cancer diagnosis
  • January 1997 went for second opinion on lump
  • Needle aspiration, biopsy, and ordered mammogram that day
  • Two days later the results was benign but doctor recommended removing anyway
  • Three days later the lumpectomy was performed and a frozen section was done during surgery which revealed malignancy.
  • Seven days later an axillary dissection was performed. The results showed no node involvement.
  • A Port a Cath was put in place and chemotherapy began on March 18, 1997. I would have six treatments of CAF every three to four weeks depending on my condition.
  • I had six treatments every three weeks. Required shots of Neupogen to keep my white blood count up.
  • I then completed 37 treatments of Radiation. I completed radiation in October 1997.
  • The results of a Menopause test showed that I had been forced completely through Menopause in 18 weeks. Estrogen Therapy became an issue to deal with. Heart and Bone are major concerns for someone my age. Increased risk of Breast Cancer from ER is just as scary barely at the age of 43.
  • In August 1998 I was diagnosed with recurrent breast cancer. I started chemotherapy again receiving four rounds of Taxotere. The site is the axillary scar where there was no evidence of cancer previously. I was given a Cat Scan and a Bone Scan.
  • January 1999 - Began High Dose Chemotherapy/Stem Cell Rescue at Duke University Transplant Center. See High Dose Chemo Diary
  • July 1999 - Back to Work
  • December 1999 - another reoccurrence with a nodule found on the axillary scar same as August 1998. The biopsy showed cancer. I was 45. I have been diagnosed with cancer three times in three years.
  • January 2000 - Implanted Radioactive Isotopes and five days in hospital isolation.
  • January 2000 - Five standard radiation treatments to specific area.
  • Resigned from Technology Coordinator position in June, 2000
  • August 2001 - Mammogram detection of cancer in right breast- mastectomy of right breast and four Taxotere and Cytoxin chemotherapy treatments ending in January 2002.
  • 2002--referred to Neurologist for nerve damage in right (dominant arm) and chemo-brain
  • Awarded Retirement Disability and Social Security Disability benefits as of June, 2000
  • Cancer free for almost two years--the longest yet.
  • September, 2006--Cancer free for five years
  • December. 2006 Cancer Survivor for 10 years.

Back to Top


Karen's Story:

In 1996 I found a lump the size of a gum ball on my right breast. Hot, burning pain drew my hand to my upper breast and I found the lump. I do regular self exams so it was a shock. It was like it grew overnight. I went immediately to my GYN. She diagnosed it as a cyst after feeling it and checking the results of my baseline mammogram from the previous year. She said that I should expect this at my age. She told me to cut down on coffee and nicotine and take vitamin E. I did all those things and the pain went away—but not the lump.

A few months later I experienced hard stabbing pains that often made me cry out. Eight months later while waiting in a doctor’s office I read an article which stated a cyst could not be diagnosed by feel and should be at least aspirated to be sure its not malignant. I went to another doctor for a second opinion and was sent to a surgeon that day. By then the lump was the size of a golf ball.

When I first found the lump I did not do any research. I placed my confidence in the doctor I had trusted for years. I believed what I was told and went on with my life feeling safe. I did not know the questions to ask and what "Best Practices" were. The result was devastating. I did have breast cancer and the lump had more than doubled in size. Eight months of early detection wasted because I didn’t know any better. I felt betrayed and seethed with anger and regret. I was very angry with the doctor but most of all I was angry with myself. I let myself down. I needed to regain control over this situation.

I vowed that I would not let that happen again and began researching on the Internet. Since I am a technologist this just seemed the logical thing to do. My husband, Harry, did most of the searching and printed out pertinent articles. At this point, I was in a state of shock. I felt powerless and out of control. My brain was not comprehending well. In another ironic twist the biopsy came back benign. The surgeon recommended a lumpectomy as a cautionary step. During the week waiting for the surgery I read the material my husband had collected. It covered a definition of breast cancer, the anatomy of the breast, lumps, cysts, and biopsies. As I carefully digested the characteristics of a malignant tumor I began to feel uneasy about the biopsy results. Pathology during surgery determined the lump to be malignant NOT BENIGN. I felt that the knowledge I had gained to that point helped me greatly. I felt confident with what the surgeon suggested and the treatment plan laid out before me.

As I read and researched I found that I could only handle so much information at a time. I would read a little bit ahead, but not far enough to jump to conclusions and scare myself. Using the Internet was like getting a second opinion. Not everyone has the luxury of a second specialist close by their area. But most areas, even the very rural, offer Internet access in their public libraries. The information I collected helped me to form good questions to ask when meeting with the doctor or nurse. A treatment plan is usually acted upon quickly not affording the patient a great deal of time for thought or discussion. Laying out questions ahead of time helps use time wisely and specifically. There are several resources in print and online that list questions to ask at each phase of the process. You can find these on this web site.

I had two more surgeries to remove my lymph nodes and insert a catheter for chemotherapy. My lymph nodes were negative, but because of the size of my tumor, 4.5 cm. my treatment plan called for six rounds of CAF chemotherapy treatments followed by radiation.

At this stage researching options and answers became very difficult. We were reading case studies and best practices were not so clear. The language was scientific and clinical and I often had to read things over and over to make sense of them. Knowledge of research and statistics was also important to analyze one study against another. I soon came to learn that the pathology characteristics of this cancer played a big role in understanding this information. More often research raised more questions than it answered. One thing I soon became sure of however, was that my doctor had access to the same research and was able to discuss best practices with us based on what we read. I felt secure that he was doing the right thing and did not seek another opinion. I gradually regained a sense of control and trust.

Chemotherapy was absolutely frightening for me. I could not find any research on the process. I found MOUNDS of research on case studies and side effects. Every time I tried to discuss my fears with friends and family they would say, "You’ll be okay. You can do it. You’re strong" Well, I didn’t feel strong and I really began to resent them telling me that. It is important to note here that fear is based a great deal on the unknown. The first day of chemo was terrifying. I was given a consent form to sign that listed every side effect known to man. I wanted to run out of the door and never come back. For weeks I had visualized the chemo room as a torture chamber just waiting to strap me in. I watched the nurse put on all this protective clothing to mix the chemicals she was going to inject inside me. She couldn’t come in contact with them but she could inject them in me. I watched every drop of the IV waiting for nausea, cramps, and other related malaise. Again, a lack of knowledge contributed to much more distress than necessary. I thought my hair would start falling out as I sat in the chair, the chemo would burn through my veins, and I would feel pain and discomfort throughout the whole treatment. Later, I was approached with a gigantic needle full of red liquid which was pumped into my IV. It was not until the treatment was almost over that I was told I would feel okay for a few days and the worst would come between 7 and 10 days. It really would have helped to know that before I began the scheduled treatments. Once again the fear of the unknown created so much additional anxiety that could have prevented with a little knowledge or a shared experience.

In my experiences speaking with other patients they all express feeling the same way before their first treatment. I have learned that some areas of the country have patient liaisons to help with the initial chemo treatment support. If there is no one like that in your area you could ask the nurse if she knows a patient who may be willing to help. The patient should be shown the chemo room as early as possible, explain what is going on, and how long it will take to begin feeling the side effects. My chemo room was actually filled with large comfortable lounge chairs, and a TV and VCR for patient use. Patients exhibit fear in a variety of ways including withdrawal (which was me) or overt anger or loudness and everything in between. Some patients are facing much worse than a cancer diagnosis in their everyday lives. I have a colleague who in the year prior to her diagnosis had her thirteen year old daughter in a coma for months with encephalitis. While at the hospital with her daughter her eight year old son drown, her mother-in-law died of mouth cancer, and her father was diagnosed with breast cancer. This beautiful, spiritual, intelligent woman was already a basket case before anyone diagnosed HER cancer. She overreacted to everything and was on the verge of a breakdown. This women needed extra special care and support. I acted as her liaison and the oncology staff was sensitive and supportive. A neighbor of mine received her cancer diagnosis just one month after her husband died of leukemia. She had just spent three years as his caretaker. She didn’t know how to turn around and care for herself and she was very, very tired. Two women I met in treatment had to deal with their husbands leaving them as soon as they were diagnosed. As my web site says, "We are not just bodies. We are not just cancer patients. We are minds and souls. Intelligence and emotions. Treatment needs to take the whole individual into account."

I continued to research chemotherapy and radiation. Radiation seemed like it would be easier except for the 3 hour commute. This is where I learned about health care politics. My oncologist said our state legislature wouldn’t allow a second radiation center to be opened in the same county until the first unit is used 100%. Our county in South Carolina is the size of the state of Rhode Island (my native state). In very rural areas the radiation facility may be too far to reach by car. I learned that many people traveled much longer than the three hours and some didn’t go at all because it was too far and the travel too costly. It was my first exposure to the fact that not all health care is created equal. However, it would not be my last.

In October 1997 I completed all my treatments and I was on top of the world. I had a new outlook, new hair, and a new appreciation of myself and my disease. I had a future again. I felt confident that we had followed best practices and that I understood why these practices were followed. I found that I was quite knowledgeable in an area that ten months ago I knew absolutely nothing about. My next important revelation came during a follow up visit with my oncologist in January, 1998. I expressed concern for some of the side effects that I was still experiencing. Sleeplessness, fatigue, lack of concentration and forgetfulness, vaginal dryness, hot flashes, and physical weakness. He said that it could not be attributable to the chemo after this much time had passed. We decided that the continued side effects could be a result of the forced menopause. At age 41 the aggressive chemo treatments (CAF) forced me through menopause in 18 weeks. He also recommended that I begin taking hormone replacement therapy to counteract the side effects of early menopause. My GYN gave me a hormone test and it was determined that I had been forced completely through menopause in 18 short weeks. I began to realize that treating my cancer alone and not my whole body, my whole health would be a major mistake. I came to the decision that I needed more information and again turned to the Internet which had served me so well so far.

I returned to the Internet to find all the information I could on menopause as a result of chemo, menopause in general, and managing side effects. I also searched for information on hormone replacement therapy. On completion of this research I knew one thing for sure. I was not going on hormone replacement. The risk of recurring breast cancer was just too great. I knew that loss of hormones at the age of 41 was going to cause me other problems specifically heart, bones, and libido but was not sure the positives outweighed the risk. My GYN and I made the decision to watch for the release of Raloxifene and not take HRT. Again I felt secure in my knowledge base. Raloxifene was also touted as a cancer preventative working as an anti-estrogen agent. This helped to reassure me that I was doing everything I could. My tumor type was hormone receptor negative so Tamoxifen was not an option for me.

In August, 1998 I was diagnosed with recurrent breast cancer. I was propelled back in to the business of collecting information. The cancer returned on the axillary scar. Since I was node negative this was unusual. The doctor explained a new best practice in cancer treatment. It was pretty safe to say that my cancer was resistant to Adriamycin which some say is due to the hormone receptor negative factor. My oncologist wanted to leave the tumor, administer Taxotere treatments, and see if the tumor responded. Again, this made sense but it was disturbing to leave the tumor there. Again I turned to research.

At this point I realized things were much more complicated than I had thought and I would probably be researching the rest of my life. I looked around at mounds of research and publications feeling overwhelmed and challenged. I empathized with the other women in the same situation who also needed to know this information. I found many women who did not realize that their side effects were due to menopause and not chemo. My husband, a web site developer, designed a web site for me as a gift. He knew it would be a way for me to give back by helping other women get the information they need. He also wisely knew that by taking care of others utilizing my background in education would be like therapy for me. In October, 1998, for Breast Cancer Awareness month, Womens-wellness.com was launched.

My goal was to provide a one stop research site covering breast cancer, menopause and whole wellness. I truly believed that these issues go hand in hand. Unfortunately I also felt that doctors were not taking this approach and women all over the world were being treated in pieces. For women, who are not cancer patients I felt the menopause and wellness information was also vital to share. I wanted to provide quality information in a format that any person could understand. It is quite common for husbands or family members to do research for the patient. I wanted to share my personal experiences in addition to the clinical information. I wanted to help the patient know what to expect. I wanted to open up opportunities for women to share questions and experiences.

More and more through this process I realized the individualization of tumor pathology. I was tested for Her2 and was negative. If I had tested positive for Her2 a drug called Herceptin would have been part of my treatment. We already knew I was hormone receptor negative. The topic of a Stem Cell Transplant came up. I agreed to speak with a doctor at Duke and began researching everything I could find on transplants. Of course, my husband Harry always contributed his hundreds pages of research. This research was even more technical and clinical than before. It was more difficult to find and not real encouraging. I had to force myself to remember that a lot of these studies dealt with women with more advanced cancer than mine. This was a very frightening time. The research was contradictory and it was difficult to decide. The discussion list helped me tremendously. Women from all over the world supported me through making this extremely difficult decision. Some women were in the same situation of trying to decide this issue for themselves. I underwent four Taxotere treatments which reduced the tumor noticeably and in January began the procedure for Stem Cell Transplant. We decided we would document the procedure in a Daily High Dose Journal published to the site every day and emailed to the list daily. Later it was added to the cancer section of the web site so patients could read the day by day account and learn what they could expect in the process. I truly think this journal has helped a lot of patients and their families make informed decisions while also alleviating some of the fear factor. I also came out of this experience with an incredible appreciation of the brave patients who enter trials and with a fractional understanding of what they go through. We all owe a great debt of thanks to the patients who’s bravery and determination has taken us to the point we are now. After reading this journal many doctors, nurses, pharmaceutical research and development teams, and pharmacists relayed that this knowledge of the patient’s perspective helped them greatly in their practice or job.

I returned home in late February and for about four months was unable to focus enough to further develop my web site. I returned to work in July 1999. Also that July I was invited to attend the first annual Patient Advocate Congress in Washington DC as a stem cell transplant patient with Dr. Vrendenburgh from Duke. This was an invigorating and informative experience. Again the inequality of health care availability came to the forefront. I met family after family who could not have transplants because their HMO would not cover it. I met a 15 year old boy from Connecticut who earned all his money for his transplant by fund raising. I was appalled that not everyone had the same opportunity for treatment that I had. I learned about current legislature before Congress and learned to lobby for patient rights. I networked with many incredible people and for the first time met several survivors of stem cell transplant. Prior to this I only knew the other patients who were at the clinic at the same time as I was. Seeing other patients who had survived several years beyond their transplant gave me new confidence and a future back again. I used my web site to inform our subscribers of all I learned and promote action on everyone’s part to equalize health care options in our country.

In December of 1999 I was diagnosed with a second recurrence on the axillary scar. This was exactly eight months since my first recurrence which was eight months from my first treatment ending. For three years I had been robbed of the opportunity to have a full year cancer free especially after all the challenges of the stem cell transplant. This was too much for me and for the first time I fell to pieces. When I received the pathology I felt like I had been handed a death sentence. I felt I had no future again and fell into a deep depression. Implanted Radioactive Isotopes had been recommended at a follow-up at Duke a few months prior, but I had decided against it. I wanted to look at each treatment optimistically and felt I shouldn't need other treatment if this treatment was what they claimed it to be. Now, it looked like I had no choice. I was fighting my own cells, which were turning out to be as strong and stubborn as I was.

Once again I ran up against the uninformed, but this time on the part of the hospital nursing staff. This procedure required five days isolation in the hospital following surgical implant. I was not prepared for my reaction to this or the nurses reaction to me. Their lack of information resulted in an unrealistic fear of me and resulted in poor care. It was a miserable week and I sobbed all morning on the last day all alone in my room. Rumors spread rapidly on the hospital floor and everyone was afraid of me. I received very little care, housekeeping, and even meals because of it. I had to call the desk and remind them that no one had brought me food. They were afraid to take anything out of my room because it might be radioactive and at a desperate time in my life I received little human contact or support because information critical to my care was not passed on among the nurses.

After my release I worked with the hospital to improve this situation. No one meant to treat me badly, but important information was not available or shared. I was the catalyst to a new policy for isolation patients. I was their advocate and created change. It may not help me, but at least some one else will not go through the same miserable experience. It is important to know that we have a voice and will be listened to if we try. Sometimes you have to pound many doors before you have success, but the feeling that you improved care for someone else is a great reward.

My current areas of research center on my particular cancer characteristics and the treatment for it. What has worked and what has not? What types of treatment work with cancer characteristics like mine? What current studies may help determine the best practice for me? It has become painfully obvious that the broad based treatments are not working for my type of cancer and others like me. I am convinced that cancer treatment needs to become specifically individualized to the cancer cells characteristics and not generically administered. This is where I will place my emphasis now. Whether it be vaccine, oncogenes, or specific drug therapy it will be decided upon based on my individual pathology.

In sharing this perspective with you I hope that I have broadened your awareness of the whole patient. I would like to summarize a few key points:

A patient is an individual whole person with intelligence and emotions which they can not separate from their treatment. Sometimes that means more baggage than you anticipated.

A patient feels powerless and small against this huge disease. They feel trapped and robbed of a future. They experience stages of grief.

Patient’s display fear in many different ways. Good resources and support can alleviate fear.

Fear comes from the unknown and special attention to alleviating the unknown prior to the treatments is a invaluable help to the patient.

Patients are more informed and active in their treatment plan because of their access to the Internet. They will also probably expect doctors and nurses to be.

I have paid special attention to all of this and now use the Internet to share all that I have learned and continue to learn daily. I have dedicated myself to this cause and know through the many emails I receive that I am making a difference. The beauty of the Internet is that we reach the whole world. We offer equality of good information to patients and women from New Hampshire to California to India to Liberia and back to Canada. Many write and thank me for the new power they feel. Many turn around and help others where they can. Knowledge is power. This can only improve health care and cancer treatment delivery.

In August of 2001 I went for my annual mammogram. It had been a year and a half since my last treatment of high dose radiation. More cancer was found in the right breast which had breast saving surgery previously. A simple mastectomy was performed since my lymph nodes had already been removed. My team of doctors was unable to agree on whether this was a reoccurrence of the same cancer or a new cancer. The suggestion was made to treat it with adjuvant therapy assuming it was a new cancer. I had four rounds of Taxotere and Cytoxan. This time I need both Neupogen for white blood count and Procrit for red blood count. I completed my therapy in January of 2002 and will go for a round of tests (CT, Bone scan, and chest x-ray) this week.

In June 2003 I had a full bone scan, MRI, and PET (Full body scan) No sign of cancer was evident. In Sept 2003 I will have been cancer free for a full two years. This will be the longest period to date. I continue to research for myself and for my list members. I share new treatments and diagnostic test information on my site I was invited to speak at an Amgen Research and Development team meeting and at the Oncology Nurses Association Conference on patient Internet use. I read and review books on cancer, menopause, and wellness for myself and share these reviews on my site. I collect resource materials and created a patient resource center at my oncologist office. I try to follow a whole wellness plan through diet, exercise and nutritional supplements. I try to keep centered, positive and stress free. I am an empowered pro-active patient starting to plan a future once again. My son is now 19 and in college. I have a hairstyle. Most of all I have the daily support and great honor to know many wonderful women who belong to my discussion list. I am very thankful on a daily basis for all of this.

In September, 2006 I celebrated five years cancer free. In October, 2006 I was selected to attend the Lance Armstrong Foundations Inaugural Survivors Summit in Austin TX. It was an uplifting, humbling and motivating experience to say the least. While attending the conference each of the 1000 delegates wrote a personal action plan regarding the improvement of issues for cancer survivors. Mine is to become more active in advocacy. I will dedicate a page on this website to the Lance Armstrong Foundation and through this hope to educate and empower you into your own plan of action. As Lance says, "Attitude is everything!" In December, 2006 I celebrated my ten year survivorship remembering the 3% chance I was given in 1999. Research and clinical trials have allowed me this survivorship and I must do all I can to make sure the funds are available to continue this invaluable research.

Back to Top


Following is a list of excellent resources for cancer patients. There are more resources throughout the site.

Patient Resource List:

Back to Top


Videos:

What I Wish I Knew hosted by Jill Eikenberry

Six women who offer hope and help in dealing with breast cancer.

Sponsored by Amgen available through their website or Amgen Inc. 1840 DeHavill and Drive Thousand Oaks, CA 91320-1789

Starting Over a video guide also from Amgen for patients and caregivers on how stem cell support helps rebuild your immune system after high-dose chemotherapy. www.neupogen.com

What Women Should Know About Breast Biopsy—A Women’s Guide to Mammotome.

Sponsored by Ethicon Eno-Surgery, Inc call 1.888.329.4224

Back to Top


Audio:

Cancer Survival Toolbox Building Skills that work for you

A set of six audio programs produced by the National Coalition for Cancer Survivorship, Oncology Nursing Society, Association of Oncology Social Work, and Genentech BioOncology Call 301.650.9127 or site www.cansearch.org

Topics: Communicating, Finding Information, Making Decisions, Solving Problems, Negotiating, and Standing up for your rights.

Excellent and comprehensive. Easy to understand. Can be listened to while receiving treatment.

Back to Top



Printed materials:

Kids Talk : Kids speak out about breast cancer Call 1.800.Im.Aware Susan G. Komen Foundation or www.breastcancerinfo.com

Questions to ask your doctor about breast cancer by the National Cancer Institute 1.800.4.cancer

Your Guide to Choosing Quality Health Care Agency for health care policy and research www.ahcpr.gov

Patient to Patient Sharing Our Experiences with Chemotherapy A joint project offered on Amgen’s site or 1.800.333.9777

Also by Amgen: Managing Career & Cancer What you need to know

Stem Cell Support Making delivery of your high dose chemotherapy possible

A guide for patients and caregivers

Easing the Side Effects of Cancer Treatment Pharmacia An Oncoline Family Service

This guide is written by a cancer survivor in the hope that the practical, first-hand information it contains will make your trials as a patient with cancer easier.

The Cancer Research Foundation’s Spanish-language video Por Su Salud, Por Su Familia, is available for $10.00 703.836.4412

Tender Loving Care American Cancer Society National Home Office 1599 Clifton Road, N.E. Atlanta, GA 30329-4251 catalog of hats, head covers and clothes for the cancer patient.

Coping With Cancer The Friend’s Health Connection www.48friend.org matches up people who are currently experiencing or who have overcome the same disease, disability or injury. This new relationship fosters emotional support for both parities. Call 800.483.7436 for free membership.

Virtual Workshops can be accessed via www.cancereducation.com and www.cancercare.org offer these workshops over the Internet covering topics such as Ovarian Cancer, Prostate Cancer, Breast reconstruction, Understanding Treatment, Challenge of Cancer in the workplace, etc.

Back to Top

 

Disclaimer: The information presented on this site should NOT replace the advice of a qualified health care professional
and is NOT presented as qualified advice or council. Please use this information as a guide or reference point
when consulting with your private physician (s).

Copyright © Vision Technology Management
Developed, Maintained and Hosted by Vision Technology Management, LLC
All proceeds go to Vision Technology Management to help support this site.
Joomla Templates by Joomlashack