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Alexandra
I had what I thought was an infection. I woke up one morning with what appeared like a flea bite on my breast. It kept growing and becoming red. I went to the doctors and got antibiotics but nothing happened. I was very lucky that I had a primary care physician, James Eichel, M.D., who knew of Inflammatory Breast Cancer.
On November 12, 1997, I had a mammogram. On November 13th, I was in a surgeon's office. On November 14th, I had a core biopsy with ultrasound.
I remember sitting in the surgeon's office and he was talking to an oncologist. These are his exact words: 'I have another (patient's name) in my office. We can do better this time!'
I had been told originally when given the antibiotics that there was a chance I had a rare breast cancer. Women who had this cancer died within weeks/months of diagnosis. On November 13, 1997, I was asking my son Teddy whom he wanted for a guardian.
I was busy trying to find and make arrangements for my son. No one had much hope for my survival. I was also busily trying to get treatment. Things fell through for care in Berkeley, Calif. I had been treated for skin cancer at the University of California at San Francisco in the 70s. Because of that success, I felt that the fates wanted me to go to UCSF.
I had been studying UNIX, a specific computer operating system, for nine months before receiving my diagnosis of IBC. I was about to get a well-paying job in UNIX. (My final project in this school is now in textbooks for students).
This was a bitter time for me. I had always had the dream of going back to school and getting a high-paying job when my son went to college. I had been a very faithful mother. Suddenly, I had to give up all dreams. It is very weird not to have a future.
I learned to live in the moment. People spend fortunes meditating or following spiritual teachers trying to learn to live in the 'now.' I got Inflammatory Breast Cancer.
There were many helpful people. As Teddy Andrews' mother, I was able to get help and support from U.S. Representatives, City Council members, politicos. I went unexpectedly to one local party and they were collecting money for my funeral.
boona cheema, the Executive Director of Building Opportunities for Self-Sufficiency (BOSS), a multi-million dollar non-profit organization, was so helpful and supportive. She had me over for dinner every Sunday night. She helped pay for my initial acupuncture with Nancy Rakela, OMD, L.Ac. She called my oncologist Charles Dollbaum, M.D. and said things like 'Alexandra is very dear to us.'
I never dealt with bills when I was in treatment. BOSS did everything for me. When my insurance disappeared, they got me on Medi-Cal and on disability -- actually, IBC is rated the same as full-blown AIDS.
Patients in cancer treatment need someone to make sure the bills are paid on time. When you are really sick, it is hard to focus and pay attention to details. You are certainly too weak to fight it out with HMOs or insurance companies. That's why having someone to advocate for you, and handle your financial matters, can be a big help.
Patricia E. Wall, Esq., Executive Director of Alameda County Homeless Action Center, was very helpful in getting my Social Security Disability. Many metastatic patients do not realize that as soon as they metastasize, they are eligible.
I gave Cancerlinks.org away to BOSS. So many helped me throughout my treatment that it would be impossible to repay everyone. Cancerlinks.org is a website that provided information to all in need. We have links to information in many languages. There is a web tutorial. It is accessible to all -- no matter physical limitations. By doing this, I feel rewarded and grateful for the opportunity.
Laura Goldbaum and Diane Scott of Womankind were enormously helpful. Laura knew about IBC because her aunt had died of IBC -- 6 months from diagnosis to death.
The people at the Charlotte Maxwell Clinic provided free complementary cancer treatments. Someone sent me to a Filipino psychic healer.
Support groups and therapy are supposed to help cancer survival. Alta Bates Medical Center in Berkeley, CA and St. Mary's Medical Center in San Francisco, CA had support groups. I was part of the UCSF Complementary Treatment Program. I saw a therapist, Deborah Krupp.
I did everything possible. Relationships with relatives suddenly bloomed. My mother, Ruth Harmon, took over my son's financial affairs. A cousin, Libby Bennett, in Swarthmore, PA became active in Teddy's care. I was able to relate to my aunt, the Honorable Isabel Burgess, who died of breast cancer. Another cousin, Suzy Cordsen, and I became close. She is finishing her training as a chaplain.
As for physicians? On the one hand, I was their dream patient -- I was offered any oncologist at UCSF because of the rarity of my cancer. On the other hand, I experienced the nightmare of the dead patient, a dead woman walking -- that's how I felt much of the time.
My sister, Heather Henry, M.D., Ph.D., came through for me. She was at the Medical School of Georgia. I had my surgery there. Because she went with me to my appointments, everyone was very helpful. For the first time, I heard some hopeful words about the possibility of survival.
I did the full IBC treatment and more: five Adriamyacin and Cytoxan treatments, mastectomy, four Taxotere treatments, and radiation.
I still live in the present. I can relate to those whose lifestyle is ended by a disaster.
But I am not dead yet! 5% survival for 5 years. As one woman told me, someone has to be in that 5%.
I went 95% deaf from a rare Cytoxan side effect. I still have major fatigue problems from all the treatments, neuropathy, and muscle and bone pain from the Taxotere. (The radiation and Taxotere combined to give me 'Taxane Toxicity.') I also still have post-mastectomy syndrome.
In general, I had a terrible time through treatment. I experienced:
Second opinions which were everyone trying to top each other: e.g., 'You are not Stage IIIB or 4 -- you are stage 5, 6, 7.'
A radiation oncologist who told me, 'This treatment is palliative.' -- this, after carefully explaining the terrible statistics of my survival from IBC. I have never forgiven him. He completely flattened me. I have never understood why it is so important to tell patients they are dead.
At one point, I told my oncologist he had to quit talking to me like I was a ghost. It was creepy. He did. Patients and oncologists need to realize the importance of creating a working relationship. This is not always easy.
I was lucky and ended up with another radiation oncologist, Jeanne Quivey, M.D. She said in all her years of practice she had never seen a patient so angry. Believe me, by this time I was planning REVENGE. What is the best revenge but living well?
Anger -- we never hear about anger and cancer. Cancer is supposed to be all 'Dancing in the Flowers' or 'This is the most wonderful gift you will ever receive.' Also, various drugs used in cancer therapy such as steroids can have rage and anger as a side effect.
I had always believed in the kind, caring doctor. I remember doctors making house calls. I had neoadjuvant chemotherapy (chemotherapy before surgery). Because neoadjuvant chemotherapy at that time was not the norm, I encountered a dearth of information that I would have received if I had followed the normal pattern of chemotherapy after surgery, such as: basic facts about chemotherapy, what side effects to be aware of and what to do, when my hair would fall out, etc. (My son, my cousin Ardele, and I buried my hair on Christmas Day).
I had no idea what to expect. I never talked to a nurse practitioner, medical social worker, or support staff. Everyone thought someone else was providing basic information to me. They were not. And meanwhile, I was in free fall. But as I am still alive, going to UCSF was the right/lucky choice.
How can I put this? One of my strengths in computers is the ability to find the flaw in the code or program. I essentially debugged the entire Breast Cancer program at UCSF. (It was terrifying). The Carol Franc Buck Breast Care Center did make a lot of changes to make things more functional for patients. I just experienced this myself -- I heard about how they wanted a one-stop floor for patients. When I had a mysterious lump appear in my arm, the pathologist came and did the fine needle biopsy right there -- this, instead of me having to get dressed and going to another floor/building to have the biopsy done. I found this very comforting.
Somehow patients must become people to their doctors. Because cancer is such a harsh disease with a huge death rate, most doctors are true heroes trying to do their very best. Many oncologists are driven by statistics. Try to see and treat your patients as human beings. Metastasis is everyone's worst nightmare.
In addition, make sure you have great office staff. Anyone facing death and believing in you needs support. Try to see your patients as people. Never ever tell them, 'you are cured.' Breast Cancer kills 40,000 plus per year. In my opinion, this is NOT a cure.
I would be a squeaky wheel. Good girls die. I am reminded of the videos on how to survive a plane crash. You are supposed to count the rows between you and the exit door. Do not gather belongings. Do not wait politely for others -- get out! Those that wait politely are the ones they find dead in the plane.
Also, I would try to get as much information as possible. Because I was not given any information and went into treatment blindly, I became very angry. Remember! A few years ago patients diagnosed with IBC were sent home to make their wills. Do not despair. Do not listen to the doomsayers. There is hope.
Do not believe in the statistics. Understand that if breast cancer is a mystery, IBC is the great unknown. A pathologist at UCSF who sees thousands told me he saw maybe three to five IBC patients per year. Do not blindly trust your oncologist. Go at once to the nearest teaching hospital! Realize many doctors do not know what IBC is. You need to fight for the very best treatment.
The Cancerlinks website started as a single piece of paper. This is from the Website:
'The Cancerlinks Website began on August 20, 1998. I was in the University of California at San Francisco Radiation Department Women's' Waiting Room. A woman told me how much she wanted to use the Internet but didn't know where to start. That night, I made a paper hand out of web addresses. In December of 1998, Bob Gill added his HTML skills. Acor.org and Saklan.com hosted the beginning search lists. Cancerlinks.org, under http://www.self-sufficiency.org/ (Building Opportunities for Self Sufficiency, a non-profit agency) went on line February 14, 1999. Peace and Light!'
Cancer is a harsh disease with a harsh treatment. Some doctors are into 'Don't ask, Don't tell' or the patient doesn't ask the right question. My goal was that no one else would suffer fear because of lack of information. Our motto is, 'No one will be afraid in the Dark of Ignorance.'
I think the website was wanted by the universe. As you know, those associated with it enjoy the blessings of the universe. I am a Quaker, and Quakers believe in leadings. This is my leading.
All of my websites together have about 150,000 visitors per month. This year, we should have almost 2 million visitors. I guess if you want to count hits, we do millions. We keep growing.
I want to mention that none of this would have been possible without the initial support from the guys in the computer lab. Most people do not think of computers as cancer therapy, but for me they were. I worked at Muster Learning Architects. John Muster is the lead author of Unix Made Easy, a best seller in the UNIX world. Scott McNeil, Norman Pancner, Mike Lewis, and Bee ChingOH all gave me support, kept me involved with Linux projects, and helped me get cancerlinks.org started.
I started this for breast cancer. A woman I knew asked me to please do one for her friend with pancreatic cancer. I did it and she died three weeks later. Then someone asked me for a prostate one, then someone asked for one dealing with melanoma, and so cancerlinks.org grew and grew. Each search is separate and distinct for each different kind of cancer. That is why I made Cancerlinks.com. There are many of the same issues for each cancer. I wanted Cancerlinks.com to be more global.
I do the websites for Malin Dollinger, M.D., http://www.thecanceranswer.org/, Ernest H. Rosenbaum, M.D. and David Spiegel, M.D., http://www.cancersupportivecare.com/, Andrew Kneier, Ph.D., http://www.melanomasupport.com, and Nancy Rakela, LAc OMD. http://www.nancyrakela.com.
I am also the list owner of Club-Mets-BC http://www.acor.org/club-mets-bc.html. This is an online support group for metastatic breast cancer patients (men and women). Some are parents dying with very young children. It is heart wrenching. My other lists are Inflammatory Breast Cancer Discussion Group http://listserv.acor.org/archives/ibc.html and Metastatic General Cancer Discussion Group http://listserv.acor.org/archives/metastatic.html
In July of 1999, Louise Heyneman and I became partners in Cancerlinks, LLC. Cancerlinks.net contains a complete current listing of our websites and projects.
People are very supportive of my work. I have had articles in MAMM (April and June 2001) and The Berkeley Daily Planet. I just finished writing a hand book, Web Access Made Easy, The Programmers Guide. This is how to write websites that all can use -- the blind, the color blind, the bifocal wearer, those with 28k modems, and so on.
Because I was writing cancer sites, I became aware of this hidden digital divide. Also, as a patient, I know what many want. I am a big believer in the team approach, so I am always listening to feedback. There is life after breast cancer. Think of breast cancer as pregnancy. Your life is changed. I do not believe that there is a breast cancer cure. The number of deaths (40,000+) has not changed in the last 20 years.
I have written chapters in the new editions of Supportive Cancer Care (old name Cancer Supportive Care) and Everyone's Guide to Cancer Therapy. We have written web tutorials for beginning users. I am writing a tutorial on listservs. I want to write many small, helpful books for cancer patients -- for instance, a book on Post-Mastectomy Syndrome. When we broke that story on Cancerlynx, thousands were suffering and being dismissed. The Canadian Medical Association says that 10-30% of all breast cancer patients, those with lumpectomies included, have this problem after surgery or radiation each year!
The Steering Committee on Clinical Practice Guidelines for the Care and Treatment of Breast Cancer says this: 'The postmastectomy syndrome is a fairly common sequel of breast surgery. All patients should be warned that it may occur, and that if it does, it does not signify a recurrence of cancer. Between 10% and 30% of patients will suffer persistent pain after breast surgery; it is more common after axillary dissection or total mastectomy than after breast-conserving surgery (BCS).'
If not for the experience, I probably would never have discovered the joys and blessings of Cancerlinks. Having a reason to jump out of bed each morning is something I am very grateful for.
There is a saying, 'Great Tests are Great Gifts.' I feel so blessed to have the opportunity to do these websites. It is a great gift to me and gives me purpose.
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To read the full article:
http://medicalreporter.health.org/tmr092001/alex1.html
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