Process and Survival
On October 30, 2004, I will mark an anniversary of sorts. On this date a year ago, my life changed dramatically. I remember small details like the doctor's matter-of-fact voice discussing major surgery, chemotherapy, losing my hair. I remember the "dear-in-the-headlights" look on my husband's face, a look probably mirrored in my own face. I remember the day was beautiful, warm and sunny. I don't remember much of my drive back out to work or exactly how I told my co-workers that I scheduled for surgery in approximately three weeks for what was, almost certainly, advanced ovarian cancer. My first reaction was probably pretty standard - DENIAL- "This can't be happening to me. I'm healthy. I eat right. I exercise." Then came -ANGER. I had just had a complete physical with my doctor (which included the OB-Gyn exam) on August 28th. I had been complaining to her for months about bloating, increased waist size, and fullness. But she had assured me that everything was fine and that my exam was normal. (How could she have missed a tumor the size of my fist?) -FEAR followed anger. I have never had surgery. Chemotherapy? A nightmare! I don't want to lose my hair! What about work, my family, my LIFE?
Fear can be a great motivator. It motivated me to learn as much as I could about ovarian cancer, the surgery, the chemotherapy protocols and the newest treatments and clinical studies. Surgery was scheduled for November 24th, two days before Thanksgiving. In the three weeks prior to surgery, I organized my work load in my department in preparation for being gone for 6-8 weeks. I spent hours gleaning information from the internet and library. I turned to friends and family for support and positive energy through prayer and visualization. With the help of my husband and a very dear friend, Sabrina, I started preparing for the surgery. We made pre and post operative tapes for stress relief (anxiety control), relaxation, pain relief, and healing. I practiced visualizing an uneventful, no complications, very successful surgery with minimal post-op discomfort and rapid recovery. My daily meditations included messages of self-healing and images of my powerful immune system already fighting and destroying the cancer cells. I continued to exercise and, in fact, went to my favorite exercise class the day before surgery. Exercise has played a very important part in my recovery from surgery and chemo. I went into surgery feeling stronger, mentally and physically, almost as if I'd been preparing for a marathon. In addition to increased exercise that included walking, step class, and weight training, I increased my vitamin intake to boost my immune system and energy levels. And just like an athlete preparing for an event, I endeavored to prepare myself emotionally and spiritually. "I feel myself strong, healthy and completely cancer free, now and forever," became, and still is, my mantra. I gathered all the good wishes and positive healing energy from friends and family like a cloak around me. I worked very hard at controlling my fears about the surgery, chemo and my future instead of letting the fears control me!
The morning of November 24th dawned clear and cold. Six AM found John and I on our way to UCSF to check in for surgery. I remember feeling somewhat disconnected to what was happening, surrounded by a sense of unreality. "I should be getting ready for work and shopping for Thanksgiving and decorating the house." Instead, we are speeding toward a big unknown. I practiced some "grounding" and "centering" techniques that Sabrina had taught me and kept deep breathing whenever the "nervous butterflies" fluttered around inside of me.
Checking in went smoothly. In my meeting with the anesthesiologist, I requested that he follow a script I had written up for him to use while talking to me during the surgery. The script had messages like: "Everything is going smoothly, Barbara," you'll wake up feeling minimal discomfort," You'll have a speedy recovery and nor complication." He agreed to my request and I was off to surgery.
The next few days are a blur, as I was in and out of sedation and on pain medication. A few memories do stand out- many, many beautiful flowers being delivered, gentle hands and voices taking care of and reassuring me; the faces of my loved ones looking stunned and scared. I must have appeared pretty scary with tubes and IV's everywhere! All seemed to be progressing smoothly until three days before my discharge. I was alert and moving around my room, sitting in the chair, and walking the hallways. Up until that time and for what seemed like for weeks, I'd been consciously putting on a good, strong, positive front. My theory was that the more positive energy would be reflected back to me in the form of: "It wasn't cancer, but just a benign cyst. Well, it is cancer, but we caught it early. The surgery will go great, and I'll recover quickly. I'll get back to my regular life!" That day started with a visit from my surgeon. She said I had had Stage IIIc ovarian cancer and she did not know if there was lymph node involvement. She was waiting for the report. She said a discharge nurse would be by to discuss chemo, wound care and at home follow-up. In her exam, the doctor found that my left leg was very swollen and she was sending me to have a CT Scan to rule out a blood clot. Also, my wound was infected in one area. She removed a few staples and started me on IV antibiotics. The staple removal procedure was very painful and I cried. Getting in and out of the wheelchair and up and down off the table for the CT scan was painful and I cried. Looking down at my 13 inch abdominal wound which was stapled except for a 3 inch open area and seeing my swollen to "twice it's size" left leg made me cry. And then there was the visit with the discharge nurse. A nice lady with a friendly smile as she spoke about chemo protocols that I'd be starting in three weeks, all of which would cause loss of hair, eyelashes and eyebrows. I cried. I felt so compromised, so vulnerable and SO ANGRY! Picture an armful of IV's shaking a fist at the sky. The next day was a little brighter. I went back to listening to my tapes, practicing my meditation and using the techniques that Sabrina and John had taught me for pain and stress relief. The CT scan was negative. No blood clots. My body was just redistributing fluids. I increased my walks around the halls and the swelling started to dissipate. The pathology report showed, to the surgeon's surprise, that there was no lymph node involvement! That first breath of fresh air was heaven! San Francisco was at it's prettiest-clear blue sky, warm sun on my face and a cool breeze caressing my cheeks and tousling my hair. My brother carefully loaded me and my pillow into his car and I was, thankfully, on my way home.
My husband, sister Nance and my mom welcomed me with a clean house, lots of tasty treats and loving arms. My sister, Laurie, would arrive in a few days. The house would be decorated for Christmas and I was preparing to embark on phase 2, recovery from surgery and starting chemotherapy.
The second part of the story will be published in a future newsletter. It describes the chemotherapy, finding clinical studies, complimentary approaches to beating ovarian cancer that have been work for Barbara.
Ovarian Cancer: a not so silent killer
Ovarian cancer has long been considered difficult to detect with vague symptoms that look like other conditions such as Irritable Bowel Syndrome and PMS. I had been experiencing bloating, gas, fullness, and urinary tract problems for several months. I complained to my doctor. She suggested dietary changes but never did any follow up testing on me. A simple blood test called CA-125 would have alerted her to the problem before it had advanced to Stage III. An elevated CA-125 (above 35) is indicative of ovarian cancer, especially in conjunction with the other symptoms I had. New research points to a clear sign of the disease: the presence of three specific symptoms simultaneously- increased waist size, bloating or gas, and the urgent need to urinate. Since my diagnosis, several friends and my sister have requested that their doctors do a baseline CA-125, especially, if they had symptoms of gas or bloating. Fortunately, they are fine. I urge you to do research, get information and if you have any symptoms or concerns, talk to your doctor and be assertive about what you want.
Vitamin and supplements that Barbara researched and used in her fight with ovarian cancer, Phase I.
The following is a list of vitamin and supplements that I took to prepare for surgery and to speed post-operative healing.
Vitamin A: 25,000 IU daily- numerous studies have shown the beneficial effects of Vit.A on healing after surgery.
Vitamin C: 2,000 mg per day- essential for collagen synthesis which is part of normal wound healing.
Zinc, magnesium, B Complex: wound healing
Vitamin E: speeds healing
Homeopathy:
Arnica montana 30x, 3-4 pellets twice per day on the day before surgery and also as soon before surgery as possible. Then take them as soon as possible in the recovery room. Take for 1 week following surgery. Arnica is very good at preventing ill effects from any kind of physical trauma. Refer to: Women's Bodies, Women's Wisdom by Christine Northrup, MD for further information about these and other supplements. She also has a script example of four healing statements for the surgeon and anesthesiologist that I requested they say to me during my operation.
I also took Cat's Claw. I found information about this herb on the internet and started taking it as soon as I was diagnosed. Cat's Claw is indigenous to the Amazon rainforest and other tropical areas of South and Central America. It has been used for over 2,000 years by indigenous peoples for a variety of conditions including wound healing, cancer, internal cleansing, and "normalizing" the body. It has been used in Europe and Peru since the early 1990's as an adjunctive treatment for cancer and AIDs as well as other diseases that target the immune system.
Post Surgery
Read Part I for information regarding diagnosis and surgery...
The next few weeks after my discharge from the hospital, were very busy. My sister, Nance, and my mom decorated the house and Christmas tree. My sister Lauren visited from Washington and cleaned, cooked and lent invaluable support to all of us. There were visits to the surgeon for follow-up and the oncologist for the initial visit. John and my sisters accompanied me. It was so very helpful to have someone else ask questions and write down information. It can be an overwhelming experience, especially when you're a little "spaced out" on vicodin for pain management, as I was. I signed on to be part of a clinical study using different combinations of medications for eight instead of the normal six cycles. Laurie had brought a book with her that offered a lot of information on how to deal with an ovarian cancer diagnosis and subsequent treatments. One suggestion was to research clinical studies. There is a great deal of "cutting edge" research out there but you may have to hunt for it, do your homework, and bring the information to your doctor. My oncologist's office was conducting a trial, I was accepted, and I was scheduled to begin treatment on December 21.
Even though I was dreading the whole process, I knew I had to approach it in much the same way I did the surgery, almost like an athletic event or a race. Attitude is defined as a manner of acting, feeling or thinking that shows one's disposition, opinion and mental set. We may not be able to control a situation, but we can choose our attitude about that situation- victim or fighter; passive or aggressive; depressed or striving toward joy and happiness; caught in the "why me's" or searching for the "what can I learn from this." With the help of many people and through much reading and research, my "attitude-adjustment" process unfolded.
A booklet entitled "Preparing for Chemo" suggests several things that I immediately put into action.
1) Get your hair cut short so that when your hair starts falling out, it's less traumatic and won't clog the shower's drain. (This worked for the drains but I was still traumatized.)
2) If you plan to wear a wig, shop for it before starting chemo. My sisters and my dear friend and hairdresser Patty, helped with both of these steps. Watching my long hair fall to the floor was very hard and yet made me feel the tiniest bit more in control of what was happening to me. To my surprise, everyone loved my new hairdo. The compliments boosted my ego when I really needed it. Nance and Laurie accompanied me to the wig shop. Laughter is very good medicine-and we laughed a lot as we all played with the wigs before settling on two very nice ones. Four hundred dollars later I was armed with my hair prosthetics and a sore belly from laughing. At this writing, I am sporting my own very short hair after nine months of wigs and hats.
3) The booklet suggests having a dental check up and cleaning before starting chemo. Also important is giving your home a thorough cleaning and perhaps scheduling someone to come in once a week thereafter- a clean house can minimize exposure to infectious agents.
4) Building up strength through exercise and a good diet can help minimize some of the side effects of chemo. This booklet and other helpful literature, is available through oncology offices and offers good practical information. I also found the library and the internet to be good resources.
Shortly after my homecoming, from the hospital, I received a telephone call from Lindy, a volunteer with the Cancer Society (set up by my husband and the cancer support staff at the hospital.) She had been diagnosed and treated for Stage IIIc ovarian cancer seven years ago. Hearing from her gave me a real boost and some good tips for dealing with the upcoming chemo. She shared her experiences with surgery, hair loss and complete recovery! She is still cancer free! In addition to advice on make-up to camouflage the fact that one has no eyebrows or eyelashes, she told me how helpful acupuncture was for her. She felt that it really minimized some of the chemo side-effects and "rebalanced" her body's energy. I believe in its efficacy and definitely feel the sessions have been very beneficial.
My first acupuncture session was four days after the first chemo treatment. The meds they gave me to prevent nausea worked very well. I didn't have much of an appetite and felt a little achy and tired but the only real side effect I experienced was a terrible, hand-wringing itching and tingling in my hands and feet. Amy, my acupuncturist, has worked with several people undergoing chemo, is very knowledgeable, and had a good treatment plan in place for me. I scheduled to see her 2 days before and 4 days after every chemo session. After my first visit with her, I did feel better, more energized and the itching had definitely dissipated a good deal. She gave me some suggestions on supplements and some Chinese herbs to use.
The side effect of itching, burning and tingling is called neuropathy and is fairly common with the types of chemo protocol I was on. After my second and third sessions, the symptoms worsened! I turned to the internet to learn more about neuropathy and what, if anything, I could do about it. I found an article by Cindy H. Makencon, website: www.ovarian-news.org, entitled "coping-Tips for dealing with neuropathy." She offered a great deal of helpful information including reports of studies on the benefits of taking fairly large doses of L-Glutamine Sulfate and Chondroitin. I forwarded this information onto Carolyn, the research nurse in charge of my clinical study, and she shared the information with the oncologist. The combination of all these things worked! The neuropathy gradually subsided and I've had no further problems.
I believe a few other factors contributed to my being able to handle the chemo pretty well. I continued to increase my exercise regimen, progressing to walking everyday and then back to the gym for step-classes, albeit modified, and lifting light weights. Exercise builds muscle strength, increases oxygen and blood flow and for me, was and is a real physical and mental energy boost.
I came across a book entitled: "Herbal Therapy & Supplements- a Scientific and Traditional Approach" written by Merrily A. Kuhn, RN, Ph.D. and David Winston, a herbalist and ethnobiologist. The book was part of an at-home study course that I needed to complete for my RN Continuing Education Credits. The book offers a comprehensive guide to many common and some less common herbs and supplements, their uses, adverse effects, contraindications, and drug-herb interactions. After careful research, I started using several herbs and supplements designed to minimize chemo side effects and boost my immune system. I was careful to use things that do not stimulate estrogen in the body as my cancer was estrogen-receptor positive. I started taking these supplements one or two things at a time in smaller doses in order to monitor any unfavorable reactions, before adding more. Most importantly, I notified my doctor that I was taking supplements and having acupuncture.
At the end of this article, I will offer a complete list of the supplements and herbs that I have been using and some information regarding the rationale for each of these additions.
For several months, our kitchen counter resembled a drug and supplement store. It was worth it! Once the neuropathy was under control, I tolerated the remainder of the chemo treatments pretty well. I was able to work full time and exercise, and my appetite and energy levels were good. Physically, acupuncture, exercise, diet, and supplements were, and still are, valuable tools which helped me deal with the chemo and recover from its serious effects.
On another level, the emotional and spiritual aids were an even more powerful part of the healing process. Previously, I mentioned my visualizations regarding pre and post operative healing and seeing myself healthy and cancer free. Now, it was time to take it a step further and include it as a powerful adjunct to the chemo medications. Rather than seeing the meds as a poison, I started to visualize it as "nectar from the gods," washing through me and being taken up by my immune cells as a potion to destroy cancer cells. A few weeks before my first treatment, I read an article about a young local girl who had battled cancer at age 16. She wrote a book about her experience and included her thoughts on seeing her chemo as "nectar from the gods." I admired her outlook and incorporated it into my work. My husband, John, created a special tape for me to listen to while receiving the infusion of chemo. This guided exercise included relaxation, healing messages, and suggestions for picturing my immune cells taking care of things and using the chemo effectively. Before each chemo session, even before they started the IV, he would do a relaxation exercise with me. This ritual became a very important part of the process. By working on my "attitude" towards the chemo and by connecting with these parts of myself that can be powerful self-healers, I felt I was taking back control of what was happening. Feeling that you are part of the healing process instead of a passive receiver of medications etc., is very empowering.
Rituals and routines are very comforting, especially when you're experiencing stressful times. My "chemo ritual" evolved from the very first session. The night before, I meditated and did my healing visualizations at bedtime. John drove me to the oncology center. I selected my chair and we settled in with his relaxation exercise. My sister, Nance, arrived bearing muffins and silly magazines. After visiting and chatting, John left for work and Nance and I munched muffins and laughed at the National Enquirer stories. About an hour before the infusion was completed, my brother, Tom, would arrive for a visit and to take me home. Somewhere in the session, my sister, Laurie, would call from Washington to check in and often John would "pop in" in his travels. I always had company and felt lovingly supported. Sabrina included me in her meditation every morning and my mom would stop by the day after the session for tea and a chat. Every three weeks from December 21 through May 27, we followed this routine. The nurses and my family got to know one another and we became a real team!
Returning to work seven weeks after surgery was another normalizing routine that made me feel like I was taking back my life. Except for the day of chemo and the following day, I have worked full time, feeling productive, healthy and normal. My co-workers have been very supportive and caring. They even threw me a graduation party to celebrate the completion of chemo.
Even before my last chemo, I was researching what to do to prevent a recurrence of the disease. I found information on a clinical study for Ovarex, a vaccine designed to prevent a recurrence of ovarian cancer. After many phone calls, letters and haggling with my insurance company, I was accepted into a study being conducted at Stanford's Cancer Center in Palo Alto. It involved monthly infusions for the first three months and then every twelve weeks for the rest of the year, with routine labs and CT scans. I have experienced only mild side effects and feel fortunate to have access to one more tool.
I would have preferred the "universe" had given me a gentle tap on the shoulder instead of this Giant Thump on the head to let me know I had things to learn about myself and how "I am" in the world. Here are some of the things I have learned from this experience:
1. Pay attention - perhaps if I had agitated more forcefully with my doctor that something was NOT right, she would have responded with more attention. LISTEN to your body and trust your intuition.
2. Don't take anything for granted - people, job, health, hair. When you face the loss of these things, you realize how special people are, how the day-to-day routine of a job is a gift, how precious good health is and even how much better a "bad hair" day is than NO HAIR!
3. There are a great many sources of invaluable information out there through people, libraries and the internet. Taking advantage of these resources allowed me to create a comprehensive plan to restore my health and fight the disease using a combination of Western and alternative therapies.
4. We do have choices in how we deal with a crisis - probably the best choice for me was to reach out and ask for help. The more people I told about my health issues, the more positive energy came my way. I felt empowered rather than vulnerable and armed with my helmet (a wig, which, by the way, I got complements on) and my armor (acupuncture, supplements, chemo, prayers and visualization) I was ready to do battle. I was "Warrior Princess" instead of cancer patient.
5. Laughter is GOOD MEDICINE!
At this writing, my labs and CT scans are completely normal. I am back to my normal routines of work and exercise. I am sporting a "Jamie Lee Curtis" hairdo. I am excited about decorating and shopping for Thanksgiving and when we all come together, we'll have a lot to be thankful for! Before we dig into our feast, I will be asking each person to write on a piece of paper, one thing that they are grateful for. Each of us will then withdraw one of these papers from the basket and try to guess who wrote the message. It will be easy to guess mine. I am grateful for all the love and support from my family and friends (with a special thanks to my son, Matt, and my husband for shaving their heads to support me and to my son, Mike, and his band for dedicating songs to me at concerts and their fund raising for the Cancer Society.) I thank you!!! It's time to celebrate!
Happy Thanksgiving 2004 and celebrate every day of your life.
Barbara's Complete Ovarian Cancer Fighting Supplement List:
Three Imperial Mushroom Capsules - available through acupuncture office
A) Reishi- Immuno stimulant: enhances immune system; use is sanctioned by the Japanese Health Ministry as an adjunct treatment for cancer; Increases activity of chemotheraputic agents and reduces adverse effects such as nausea, decreased white blood cell counts; helps protect the liver against damage caused by viral, drug and environmental toxins.
B) Shitaki- strengthens immune system response: improves survival times of cancer patients when used concurrently with chemo.
C) Maitake- best known for cancer fighting properties: many doctors in Japan use it to lower blood pressure and blood lipids; effective as an anti-tumor agent and immune system modulator.
Echinacia- used in Germany along with chemo in the treatment of cancer. May enhance white blood cell counts in persons undergoing chemo.
Cat's Claw- reduces side effects of chemo; used in clinical practice in Europe for cancer & HIV; has important immune enhancing properties; helps increase the number of T-cells, the true soldiers of the immune system. In Austria, it is used together with conventional treatment (chemo, radiation &/or surgery) to treat hundreds of cancer patients per year.
Graviola- scientists have been studying this herb since the 1940's - four studies were published in 1998 re: significant anti-tumor properties and selective toxicity against various types of cancer cells (without harming healthy cells; Purdue University has conducted a great deal of research on the Annonaceous acetogenins family to which graviola belongs) much of which has been funded by the National Cancer Institute or the National Institute of Health.
Acidophyllis- rebalances intestinal flora (especially important when you're taking a lot of medications.)
ultivitamins with Vitamin E
Calcium Supplement
IP-6 with Insositol- has been studied extensively for over 20 years; has powerful effects on the immune system.
Wheat Grass Juice- increases hemoglobin; rebuilds the blood; improves body's ability to heal wounds; washes drug deposits from the body; neutralizes toxins and carcinogens in the body.
Green and White Tea- Chinese believe green tea is a cure for cancer and a longevity tonic; boosts immune system function; research being done all over the world and in the US by the National Cancer Institute re: anti-tumor activity. Both green and white tea are excellent antioxidants.
On October 30, 2004, I will mark an anniversary of sorts. On this date a year ago, my life changed dramatically. I remember small details like the doctor's matter-of-fact voice discussing major surgery, chemotherapy, losing my hair. I remember the "dear-in-the-headlights" look on my husband's face, a look probably mirrored in my own face. I remember the day was beautiful, warm and sunny. I don't remember much of my drive back out to work or exactly how I told my co-workers that I scheduled for surgery in approximately three weeks for what was, almost certainly, advanced ovarian cancer. My first reaction was probably pretty standard - DENIAL- "This can't be happening to me. I'm healthy. I eat right. I exercise." Then came -ANGER. I had just had a complete physical with my doctor (which included the OB-Gyn exam) on August 28th. I had been complaining to her for months about bloating, increased waist size, and fullness. But she had assured me that everything was fine and that my exam was normal. (How could she have missed a tumor the size of my fist?) -FEAR followed anger. I have never had surgery. Chemotherapy? A nightmare! I don't want to lose my hair! What about work, my family, my LIFE?
Fear can be a great motivator. It motivated me to learn as much as I could about ovarian cancer, the surgery, the chemotherapy protocols and the newest treatments and clinical studies. Surgery was scheduled for November 24th, two days before Thanksgiving. In the three weeks prior to surgery, I organized my work load in my department in preparation for being gone for 6-8 weeks. I spent hours gleaning information from the internet and library. I turned to friends and family for support and positive energy through prayer and visualization. With the help of my husband and a very dear friend, Sabrina, I started preparing for the surgery. We made pre and post operative tapes for stress relief (anxiety control), relaxation, pain relief, and healing. I practiced visualizing an uneventful, no complications, very successful surgery with minimal post-op discomfort and rapid recovery. My daily meditations included messages of self-healing and images of my powerful immune system already fighting and destroying the cancer cells. I continued to exercise and, in fact, went to my favorite exercise class the day before surgery. Exercise has played a very important part in my recovery from surgery and chemo. I went into surgery feeling stronger, mentally and physically, almost as if I'd been preparing for a marathon. In addition to increased exercise that included walking, step class, and weight training, I increased my vitamin intake to boost my immune system and energy levels. And just like an athlete preparing for an event, I endeavored to prepare myself emotionally and spiritually. "I feel myself strong, healthy and completely cancer free, now and forever," became, and still is, my mantra. I gathered all the good wishes and positive healing energy from friends and family like a cloak around me. I worked very hard at controlling my fears about the surgery, chemo and my future instead of letting the fears control me!
The morning of November 24th dawned clear and cold. Six AM found John and I on our way to UCSF to check in for surgery. I remember feeling somewhat disconnected to what was happening, surrounded by a sense of unreality. "I should be getting ready for work and shopping for Thanksgiving and decorating the house." Instead, we are speeding toward a big unknown. I practiced some "grounding" and "centering" techniques that Sabrina had taught me and kept deep breathing whenever the "nervous butterflies" fluttered around inside of me.
Checking in went smoothly. In my meeting with the anesthesiologist, I requested that he follow a script I had written up for him to use while talking to me during the surgery. The script had messages like: "Everything is going smoothly, Barbara," you'll wake up feeling minimal discomfort," You'll have a speedy recovery and nor complication." He agreed to my request and I was off to surgery.
The next few days are a blur, as I was in and out of sedation and on pain medication. A few memories do stand out- many, many beautiful flowers being delivered, gentle hands and voices taking care of and reassuring me; the faces of my loved ones looking stunned and scared. I must have appeared pretty scary with tubes and IV's everywhere! All seemed to be progressing smoothly until three days before my discharge. I was alert and moving around my room, sitting in the chair, and walking the hallways. Up until that time and for what seemed like for weeks, I'd been consciously putting on a good, strong, positive front. My theory was that the more positive energy would be reflected back to me in the form of: "It wasn't cancer, but just a benign cyst. Well, it is cancer, but we caught it early. The surgery will go great, and I'll recover quickly. I'll get back to my regular life!" That day started with a visit from my surgeon. She said I had had Stage IIIc ovarian cancer and she did not know if there was lymph node involvement. She was waiting for the report. She said a discharge nurse would be by to discuss chemo, wound care and at home follow-up. In her exam, the doctor found that my left leg was very swollen and she was sending me to have a CT Scan to rule out a blood clot. Also, my wound was infected in one area. She removed a few staples and started me on IV antibiotics. The staple removal procedure was very painful and I cried. Getting in and out of the wheelchair and up and down off the table for the CT scan was painful and I cried. Looking down at my 13 inch abdominal wound which was stapled except for a 3 inch open area and seeing my swollen to "twice it's size" left leg made me cry. And then there was the visit with the discharge nurse. A nice lady with a friendly smile as she spoke about chemo protocols that I'd be starting in three weeks, all of which would cause loss of hair, eyelashes and eyebrows. I cried. I felt so compromised, so vulnerable and SO ANGRY! Picture an armful of IV's shaking a fist at the sky. The next day was a little brighter. I went back to listening to my tapes, practicing my meditation and using the techniques that Sabrina and John had taught me for pain and stress relief. The CT scan was negative. No blood clots. My body was just redistributing fluids. I increased my walks around the halls and the swelling started to dissipate. The pathology report showed, to the surgeon's surprise, that there was no lymph node involvement! That first breath of fresh air was heaven! San Francisco was at it's prettiest-clear blue sky, warm sun on my face and a cool breeze caressing my cheeks and tousling my hair. My brother carefully loaded me and my pillow into his car and I was, thankfully, on my way home.
My husband, sister Nance and my mom welcomed me with a clean house, lots of tasty treats and loving arms. My sister, Laurie, would arrive in a few days. The house would be decorated for Christmas and I was preparing to embark on phase 2, recovery from surgery and starting chemotherapy.
The second part of the story will be published in a future newsletter. It describes the chemotherapy, finding clinical studies, complimentary approaches to beating ovarian cancer that have been work for Barbara.
Ovarian Cancer: a not so silent killer
Ovarian cancer has long been considered difficult to detect with vague symptoms that look like other conditions such as Irritable Bowel Syndrome and PMS. I had been experiencing bloating, gas, fullness, and urinary tract problems for several months. I complained to my doctor. She suggested dietary changes but never did any follow up testing on me. A simple blood test called CA-125 would have alerted her to the problem before it had advanced to Stage III. An elevated CA-125 (above 35) is indicative of ovarian cancer, especially in conjunction with the other symptoms I had. New research points to a clear sign of the disease: the presence of three specific symptoms simultaneously- increased waist size, bloating or gas, and the urgent need to urinate. Since my diagnosis, several friends and my sister have requested that their doctors do a baseline CA-125, especially, if they had symptoms of gas or bloating. Fortunately, they are fine. I urge you to do research, get information and if you have any symptoms or concerns, talk to your doctor and be assertive about what you want.
Vitamin and supplements that Barbara researched and used in her fight with ovarian cancer, Phase I.
The following is a list of vitamin and supplements that I took to prepare for surgery and to speed post-operative healing.
Vitamin A: 25,000 IU daily- numerous studies have shown the beneficial effects of Vit.A on healing after surgery.
Vitamin C: 2,000 mg per day- essential for collagen synthesis which is part of normal wound healing.
Zinc, magnesium, B Complex: wound healing
Vitamin E: speeds healing
Homeopathy:
Arnica montana 30x, 3-4 pellets twice per day on the day before surgery and also as soon before surgery as possible. Then take them as soon as possible in the recovery room. Take for 1 week following surgery. Arnica is very good at preventing ill effects from any kind of physical trauma. Refer to: Women's Bodies, Women's Wisdom by Christine Northrup, MD for further information about these and other supplements. She also has a script example of four healing statements for the surgeon and anesthesiologist that I requested they say to me during my operation.
I also took Cat's Claw. I found information about this herb on the internet and started taking it as soon as I was diagnosed. Cat's Claw is indigenous to the Amazon rainforest and other tropical areas of South and Central America. It has been used for over 2,000 years by indigenous peoples for a variety of conditions including wound healing, cancer, internal cleansing, and "normalizing" the body. It has been used in Europe and Peru since the early 1990's as an adjunctive treatment for cancer and AIDs as well as other diseases that target the immune system.
Post Surgery
Read Part I for information regarding diagnosis and surgery...
The next few weeks after my discharge from the hospital, were very busy. My sister, Nance, and my mom decorated the house and Christmas tree. My sister Lauren visited from Washington and cleaned, cooked and lent invaluable support to all of us. There were visits to the surgeon for follow-up and the oncologist for the initial visit. John and my sisters accompanied me. It was so very helpful to have someone else ask questions and write down information. It can be an overwhelming experience, especially when you're a little "spaced out" on vicodin for pain management, as I was. I signed on to be part of a clinical study using different combinations of medications for eight instead of the normal six cycles. Laurie had brought a book with her that offered a lot of information on how to deal with an ovarian cancer diagnosis and subsequent treatments. One suggestion was to research clinical studies. There is a great deal of "cutting edge" research out there but you may have to hunt for it, do your homework, and bring the information to your doctor. My oncologist's office was conducting a trial, I was accepted, and I was scheduled to begin treatment on December 21.
Even though I was dreading the whole process, I knew I had to approach it in much the same way I did the surgery, almost like an athletic event or a race. Attitude is defined as a manner of acting, feeling or thinking that shows one's disposition, opinion and mental set. We may not be able to control a situation, but we can choose our attitude about that situation- victim or fighter; passive or aggressive; depressed or striving toward joy and happiness; caught in the "why me's" or searching for the "what can I learn from this." With the help of many people and through much reading and research, my "attitude-adjustment" process unfolded.
A booklet entitled "Preparing for Chemo" suggests several things that I immediately put into action.
1) Get your hair cut short so that when your hair starts falling out, it's less traumatic and won't clog the shower's drain. (This worked for the drains but I was still traumatized.)
2) If you plan to wear a wig, shop for it before starting chemo. My sisters and my dear friend and hairdresser Patty, helped with both of these steps. Watching my long hair fall to the floor was very hard and yet made me feel the tiniest bit more in control of what was happening to me. To my surprise, everyone loved my new hairdo. The compliments boosted my ego when I really needed it. Nance and Laurie accompanied me to the wig shop. Laughter is very good medicine-and we laughed a lot as we all played with the wigs before settling on two very nice ones. Four hundred dollars later I was armed with my hair prosthetics and a sore belly from laughing. At this writing, I am sporting my own very short hair after nine months of wigs and hats.
3) The booklet suggests having a dental check up and cleaning before starting chemo. Also important is giving your home a thorough cleaning and perhaps scheduling someone to come in once a week thereafter- a clean house can minimize exposure to infectious agents.
4) Building up strength through exercise and a good diet can help minimize some of the side effects of chemo. This booklet and other helpful literature, is available through oncology offices and offers good practical information. I also found the library and the internet to be good resources.
Shortly after my homecoming, from the hospital, I received a telephone call from Lindy, a volunteer with the Cancer Society (set up by my husband and the cancer support staff at the hospital.) She had been diagnosed and treated for Stage IIIc ovarian cancer seven years ago. Hearing from her gave me a real boost and some good tips for dealing with the upcoming chemo. She shared her experiences with surgery, hair loss and complete recovery! She is still cancer free! In addition to advice on make-up to camouflage the fact that one has no eyebrows or eyelashes, she told me how helpful acupuncture was for her. She felt that it really minimized some of the chemo side-effects and "rebalanced" her body's energy. I believe in its efficacy and definitely feel the sessions have been very beneficial.
My first acupuncture session was four days after the first chemo treatment. The meds they gave me to prevent nausea worked very well. I didn't have much of an appetite and felt a little achy and tired but the only real side effect I experienced was a terrible, hand-wringing itching and tingling in my hands and feet. Amy, my acupuncturist, has worked with several people undergoing chemo, is very knowledgeable, and had a good treatment plan in place for me. I scheduled to see her 2 days before and 4 days after every chemo session. After my first visit with her, I did feel better, more energized and the itching had definitely dissipated a good deal. She gave me some suggestions on supplements and some Chinese herbs to use.
The side effect of itching, burning and tingling is called neuropathy and is fairly common with the types of chemo protocol I was on. After my second and third sessions, the symptoms worsened! I turned to the internet to learn more about neuropathy and what, if anything, I could do about it. I found an article by Cindy H. Makencon, website: www.ovarian-news.org, entitled "coping-Tips for dealing with neuropathy." She offered a great deal of helpful information including reports of studies on the benefits of taking fairly large doses of L-Glutamine Sulfate and Chondroitin. I forwarded this information onto Carolyn, the research nurse in charge of my clinical study, and she shared the information with the oncologist. The combination of all these things worked! The neuropathy gradually subsided and I've had no further problems.
I believe a few other factors contributed to my being able to handle the chemo pretty well. I continued to increase my exercise regimen, progressing to walking everyday and then back to the gym for step-classes, albeit modified, and lifting light weights. Exercise builds muscle strength, increases oxygen and blood flow and for me, was and is a real physical and mental energy boost.
I came across a book entitled: "Herbal Therapy & Supplements- a Scientific and Traditional Approach" written by Merrily A. Kuhn, RN, Ph.D. and David Winston, a herbalist and ethnobiologist. The book was part of an at-home study course that I needed to complete for my RN Continuing Education Credits. The book offers a comprehensive guide to many common and some less common herbs and supplements, their uses, adverse effects, contraindications, and drug-herb interactions. After careful research, I started using several herbs and supplements designed to minimize chemo side effects and boost my immune system. I was careful to use things that do not stimulate estrogen in the body as my cancer was estrogen-receptor positive. I started taking these supplements one or two things at a time in smaller doses in order to monitor any unfavorable reactions, before adding more. Most importantly, I notified my doctor that I was taking supplements and having acupuncture.
At the end of this article, I will offer a complete list of the supplements and herbs that I have been using and some information regarding the rationale for each of these additions.
For several months, our kitchen counter resembled a drug and supplement store. It was worth it! Once the neuropathy was under control, I tolerated the remainder of the chemo treatments pretty well. I was able to work full time and exercise, and my appetite and energy levels were good. Physically, acupuncture, exercise, diet, and supplements were, and still are, valuable tools which helped me deal with the chemo and recover from its serious effects.
On another level, the emotional and spiritual aids were an even more powerful part of the healing process. Previously, I mentioned my visualizations regarding pre and post operative healing and seeing myself healthy and cancer free. Now, it was time to take it a step further and include it as a powerful adjunct to the chemo medications. Rather than seeing the meds as a poison, I started to visualize it as "nectar from the gods," washing through me and being taken up by my immune cells as a potion to destroy cancer cells. A few weeks before my first treatment, I read an article about a young local girl who had battled cancer at age 16. She wrote a book about her experience and included her thoughts on seeing her chemo as "nectar from the gods." I admired her outlook and incorporated it into my work. My husband, John, created a special tape for me to listen to while receiving the infusion of chemo. This guided exercise included relaxation, healing messages, and suggestions for picturing my immune cells taking care of things and using the chemo effectively. Before each chemo session, even before they started the IV, he would do a relaxation exercise with me. This ritual became a very important part of the process. By working on my "attitude" towards the chemo and by connecting with these parts of myself that can be powerful self-healers, I felt I was taking back control of what was happening. Feeling that you are part of the healing process instead of a passive receiver of medications etc., is very empowering.
Rituals and routines are very comforting, especially when you're experiencing stressful times. My "chemo ritual" evolved from the very first session. The night before, I meditated and did my healing visualizations at bedtime. John drove me to the oncology center. I selected my chair and we settled in with his relaxation exercise. My sister, Nance, arrived bearing muffins and silly magazines. After visiting and chatting, John left for work and Nance and I munched muffins and laughed at the National Enquirer stories. About an hour before the infusion was completed, my brother, Tom, would arrive for a visit and to take me home. Somewhere in the session, my sister, Laurie, would call from Washington to check in and often John would "pop in" in his travels. I always had company and felt lovingly supported. Sabrina included me in her meditation every morning and my mom would stop by the day after the session for tea and a chat. Every three weeks from December 21 through May 27, we followed this routine. The nurses and my family got to know one another and we became a real team!
Returning to work seven weeks after surgery was another normalizing routine that made me feel like I was taking back my life. Except for the day of chemo and the following day, I have worked full time, feeling productive, healthy and normal. My co-workers have been very supportive and caring. They even threw me a graduation party to celebrate the completion of chemo.
Even before my last chemo, I was researching what to do to prevent a recurrence of the disease. I found information on a clinical study for Ovarex, a vaccine designed to prevent a recurrence of ovarian cancer. After many phone calls, letters and haggling with my insurance company, I was accepted into a study being conducted at Stanford's Cancer Center in Palo Alto. It involved monthly infusions for the first three months and then every twelve weeks for the rest of the year, with routine labs and CT scans. I have experienced only mild side effects and feel fortunate to have access to one more tool.
I would have preferred the "universe" had given me a gentle tap on the shoulder instead of this Giant Thump on the head to let me know I had things to learn about myself and how "I am" in the world. Here are some of the things I have learned from this experience:
1. Pay attention - perhaps if I had agitated more forcefully with my doctor that something was NOT right, she would have responded with more attention. LISTEN to your body and trust your intuition.
2. Don't take anything for granted - people, job, health, hair. When you face the loss of these things, you realize how special people are, how the day-to-day routine of a job is a gift, how precious good health is and even how much better a "bad hair" day is than NO HAIR!
3. There are a great many sources of invaluable information out there through people, libraries and the internet. Taking advantage of these resources allowed me to create a comprehensive plan to restore my health and fight the disease using a combination of Western and alternative therapies.
4. We do have choices in how we deal with a crisis - probably the best choice for me was to reach out and ask for help. The more people I told about my health issues, the more positive energy came my way. I felt empowered rather than vulnerable and armed with my helmet (a wig, which, by the way, I got complements on) and my armor (acupuncture, supplements, chemo, prayers and visualization) I was ready to do battle. I was "Warrior Princess" instead of cancer patient.
5. Laughter is GOOD MEDICINE!
At this writing, my labs and CT scans are completely normal. I am back to my normal routines of work and exercise. I am sporting a "Jamie Lee Curtis" hairdo. I am excited about decorating and shopping for Thanksgiving and when we all come together, we'll have a lot to be thankful for! Before we dig into our feast, I will be asking each person to write on a piece of paper, one thing that they are grateful for. Each of us will then withdraw one of these papers from the basket and try to guess who wrote the message. It will be easy to guess mine. I am grateful for all the love and support from my family and friends (with a special thanks to my son, Matt, and my husband for shaving their heads to support me and to my son, Mike, and his band for dedicating songs to me at concerts and their fund raising for the Cancer Society.) I thank you!!! It's time to celebrate!
Happy Thanksgiving 2004 and celebrate every day of your life.
Barbara's Complete Ovarian Cancer Fighting Supplement List:
Three Imperial Mushroom Capsules - available through acupuncture office
A) Reishi- Immuno stimulant: enhances immune system; use is sanctioned by the Japanese Health Ministry as an adjunct treatment for cancer; Increases activity of chemotheraputic agents and reduces adverse effects such as nausea, decreased white blood cell counts; helps protect the liver against damage caused by viral, drug and environmental toxins.
B) Shitaki- strengthens immune system response: improves survival times of cancer patients when used concurrently with chemo.
C) Maitake- best known for cancer fighting properties: many doctors in Japan use it to lower blood pressure and blood lipids; effective as an anti-tumor agent and immune system modulator.
Echinacia- used in Germany along with chemo in the treatment of cancer. May enhance white blood cell counts in persons undergoing chemo.
Cat's Claw- reduces side effects of chemo; used in clinical practice in Europe for cancer & HIV; has important immune enhancing properties; helps increase the number of T-cells, the true soldiers of the immune system. In Austria, it is used together with conventional treatment (chemo, radiation &/or surgery) to treat hundreds of cancer patients per year.
Graviola- scientists have been studying this herb since the 1940's - four studies were published in 1998 re: significant anti-tumor properties and selective toxicity against various types of cancer cells (without harming healthy cells; Purdue University has conducted a great deal of research on the Annonaceous acetogenins family to which graviola belongs) much of which has been funded by the National Cancer Institute or the National Institute of Health.
Acidophyllis- rebalances intestinal flora (especially important when you're taking a lot of medications.)
ultivitamins with Vitamin E
Calcium Supplement
IP-6 with Insositol- has been studied extensively for over 20 years; has powerful effects on the immune system.
Wheat Grass Juice- increases hemoglobin; rebuilds the blood; improves body's ability to heal wounds; washes drug deposits from the body; neutralizes toxins and carcinogens in the body.
Green and White Tea- Chinese believe green tea is a cure for cancer and a longevity tonic; boosts immune system function; research being done all over the world and in the US by the National Cancer Institute re: anti-tumor activity. Both green and white tea are excellent antioxidants.
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