My cousin, Mary Brown, is an ovarian cancer survivor. I am posting her story (written by her) because, first of all, she is a pretty amazing lady, and secondly, I want you to understand the critical importance of nutrition in her journey. Cancer is awful and I hate everything about it. I firmly believe nutrition is key to not only surviving cancer, but also preventing it. I hope you enjoy reading Mary’s courageous and inspiring story.
I am a three year, two time ovarian cancer survivor. As soon as you are diagnosed, you become a survivor. August 15, 2011 is a date I will never forget. When you hear the words cancer and malignant in the same sentence, your life changes forever. That was the date that I learned I had Stage 1C Clear Cell Ovarian cancer. I was 55 years old and in very good health otherwise.
After the initial shock (because the last words from my gynecology oncologist, before surgery, were “the odds are in your favor that it will just be a cyst”) we cried and we prayed and my doctor talked about how we caught it early and I may even be cured! I had the usual symptoms: bleeding, fatigue and a slight “tummy ache” and feeling full after eating for months. But at the time, ovarian cancer, let alone the symptoms, were not on my radar at all! I had been babysitting two days a week for my newborn twin grandchildren several months prior to and during the symptoms starting, so I wrote off the fatigue. I would literally be exhausted after those two days in a row! I had been doing bio identical hormones at the time, and my hormone doctor had been “adjusting” them, hence the bleeding-even though I was long past menopause! And I felt ridiculous calling my doctor to tell him I have a “tummy ache.” So I went several months attempting to diagnose myself. I write that to tell you this-know your body! If something isn’t right for several weeks, it needs to be checked out! Be persistent, and do not stop searching until you find answers! Women tend to be the care givers of everyone else first, and take care of themselves last. If one doctor doesn’t find anything, keep going! Doctors are only searching data, just like us! I had to go to three doctors before finding the problem!
The first doctor was my hormone doctor, supposedly a gynecologist, and all he did was inject hormone pellets into my hip! Something, by the way, that was harmful to me with cancer. My GI doctor sent me home with a bottle of probiotics, and said that my symptoms were too vague to order a bunch of tests. My gynecologist did an exam, and ordered an ultrasound immediately. A cyst showed up on my right ovary, and he got me in with the top gynecology oncologist in Charlotte that week. My CA 125 came back elevated at 76 (35 or below is considered normal), but they said that any inflammation in your body can cause it to rise. Something that I will learn to live with the rest of my life – a rising/falling CA 125 blood test.
I went through the standard front line treatment of carboplatin and taxol chemotherapy. It is pretty rough stuff, but they give you plenty of drugs to ward off any side effects. I had 6 treatments over a 4 month period, and actually survived very well. I slept for 2 days after each treatment, and then would be okay until the next one. After the first treatment, I was caught off guard with severe bone pain in my legs. It was very painful and deep. I could not get comfortable, but I took more drugs to combat that pain and did fine. My sweet and devoted husband, Charlie, came to every treatment and doctor appointment with me, and took such good care of me during this time, along with other family, friends & church family. I felt very blessed!
I think losing my hair was the worse part of front line treatment. I sobbed when I shaved my head, and other than my friend, Cindy, who shaved it for me, my husband was the only one who saw me bald. And I mean slick! You lose every hair on your body! I chose to wear a scarf most of the time (the wig is itchy) and I had some very heartwarming experiences because of it. People tended to be especially nice and helpful! I would always share them with my family and we would chuckle and say, “It was the scarf.” These experiences actually made me more confident, and soon I was not self-conscious about it at all. My 3 year old granddaughter put it in perspective for me though. We were babysitting one week end, and I had my wig on, and we needed to shower. So I asked Avery if she wanted to see Mimi’s new haircut, and pointed to my wig and told her that this was not my hair. She said yes, so I took off my wig and she said, “Why did you cut your hair like that?” And I told her that I had to because of the “boo boo” in my belly, and she said, “Why do you wear those big earrings?” And I said because of my new haircut and she said, “Um, okay” and skipped off! No big deal! January 5, 2012 was my last treatment, and honestly, at the time, I felt like I could not stand another one. Never say never……
I was feeling great in early spring 2012, at one of my doctor’s visits, and casually asked my doctor, if my biopsy staging had come back 1A or B would I have had to have chemo? His demeanor changed and quickly became very serious; his answer hit me very hard. He said that clear cell is the worst type of the five types of ovarian cancer, very aggressive and hard to treat. My CA 125 ranged from 9-12 at the time, and I had stayed away from the internet and information regarding ovarian cancer. I felt very strongly at that moment that I had not seen the last of the cancer. I began researching that day, and came across several on line support groups on the internet, specifically, Inspire.com.
In late July, my CA 125 jumped up to 18.5, and so they wanted to do another test in four weeks, as a rising CA125 is one of the markers for a recurrence. This literally scared me so bad that I started immediately on a quest to change my diet to an anti-cancer diet. I had been reading a lot about sugar feeding cancer, and had danced all around changing my diet to a more anti-cancer diet, but never really did it consistently. My cousin, Robin, was reading a lot about it and became not only my mentor, but also an expert on the subject. She and her husband were embarking on this way of eating for their own health reasons, not particularly because of cancer, but because we all can benefit from this healthy lifestyle. I dove in head first, and cut out all sugar from my diet and only ate protein, veggies and fruit. This of course sent my digestive system a little crazy, and I was having all kinds of pain. But after three weeks, I called my doctor and scheduled the scan. It showed a pea size implant on my left abdominal wall. It was back! It is at this moment that your mortality flashes before your eyes, and you know that you are literally in for the fight of your life! There is no cure, and now your best hope is to stay as healthy as possible, to not only fight off cancer, but also survive any future treatments! But at the same time, you also cling to the fact that many women live years with multiple recurrences, and it is treated more as a chronic disease. I desperately wanted to be one of those women. My sons, Justin, Griffin and Andy, desperate to do something, went together and had a matching tattoo that said “FIGHT” in Japanese, and posted it on Facebook. It was their love language and inspired me to do just that! The good news was that no organ or lymph node involvement was detected in the scan.
OPTIONS & TREATMENT
My doctor did not offer surgery as an option, period. We did schedule a needle biopsy to confirm the cancer, and also send a sample to Caris Laboratories for cell assay testing. We were excited to learn that they can test the tissue to help determine the most effective chemo for my specific cancer. Ovarian cancer is so hard to treat because it presents itself differently in each patient, and what works for one may not work for another. It is also very smart, in that it is capable of mutating on its own, so that what worked before on an individual may not work again. This would take 3 very long weeks! My doctor offered to schedule a second opinion for us, but we believed it to be unnecessary, so we declined.
We got on our knees and started praying. We are very strong believers in the power of prayer. It has been a huge part of my story, so I must include how many times God answered prayer at just the right moment to help us navigate through this recurrence. I think finding Libby’s Hope was one of many answered prayers!
I was very distraught and was reading messages on Inspire.com, a website that provides an online support group, and ran across a link to a website dedicated solely to clear cell, called Libby’s Hope. I was amazed at the information! I left an email on the website that said, “I just need some hope…..” Paul Cacciatore responded that day with seven pages of hope! Charlie and I were floored, to say the least. Thus began my research and quest for knowledge to understand treatment options, clinical trials, and other cell assay opportunities. This was in early September 2012, and I had just become my own advocate, something that everyone should do. And if you are not able to do it yourself, find a family member or friend willing to do it for you!
At the same time, another cousin, Kim, saw a post on Facebook that Charlie had written about my cancer being back. Kim lives in another state, and I have seen her maybe three times in the last ten years. She called me to introduce me to a friend of hers who serves as an advocate on the Gynecology Oncology Group Board (GOG-they oversee many clinical trials). Dorothy is a ten year ovarian cancer survivor, and good friends with the then head of Gyn Oncology at Virginia Commonwealth University in Richmond, VA. She asked if I would consider doing a consult with the doctor. I said yes, even though Richmond is a six hour drive from Charlotte.
The night before we left for Richmond, I told Charlie maybe we should forget about this consult; it was 6 hours away and we were not planning on switching doctors! He insisted that this consult was literally dropped in our laps for a reason and we were definitely going. The first words out of the doctor’s mouth as she entered the room were, “you are a perfect candidate for surgery!” WHAT??!! Also, that I had lots of options for treatment and many years left in this fight. We left there full of hope, and so glad that we kept that appointment! Always get a second opinion, preferably somewhere away from your cancer center!
Now, what do you do with two conflicting opinions on how to treat this recurrence? We prayed and prayed. I researched anything I could find on the subject, and I updated Paul Cacciatore with Libby’s Hope on our 2nd opinion consult. I spoke to my doctor in Charlotte about it, and he was still reluctant to do surgery, saying that it is impossible to get everything and why put my body through that again so soon? Charlie got a very clear message through prayer that our answer would come from a third party, and that very evening I got an email from Libby’s Hope, advising me that their resource would do the surgery, that lowering the tumor burden whenever possible is always the right thing to do. Another answered prayer. I told my doctor in Charlotte that I wanted the surgery, and I would like him to do it, but if he wouldn’t, then find me someone who would! The surgery was scheduled for a week later; September 28, 2012.
In the meantime, Libby’s Hope provided me with much information, from clinical trials to other resources, such as having my tumor tested for chemo sensitivity. I contacted Rational Therapeutics, and also, Clearity Research, to test my tumor tissue as well. I was doing everything possible to beat this disease. In the end, Topotecan came back as an effective chemotherapy to use on my specific tumor. Since it was one of the nicer chemos, my doctor and I decided to save the “big guns” (chemo treatments with harsher side effects) for later. And there was no guarantee that this would work, but worth a try. I used to joke with my doctor and say, “Now that I have my medical degree…what do you think about this or that?” I was referring to all of my research and ever increasing knowledge about ovarian cancer. My head was spinning with so much info, but you know what? He treated me differently because he realized that I was questioning and researching everything on my own, and making decisions based on all available resources. Be your own advocate! I cannot say that enough. In the meantime, I was learning to accept that this was going to be a marathon, not a sprint.
The day after my surgery, my doctor was amazed that I was already sitting up in a chair. He was also very pleased to tell me that he indeed felt like he had gotten it all! My biopsy showed that it was a recurrence, and microscopic cells did show up in the abdominal wash. Rats, those suckers were still floating around! Back to the world of infusion labs, people in various stages of cancer journeys, and a lot of nurses with a true gift of compassion caring for us. I have to admit that although I survived very well, I never really got used to the infusion lab. Thankfully, our cancer center had modules that we could just stay to ourselves. Six months, eighteen treatments total, and no hair loss this time! I finished on March 25, 2013.
It was at this time, I decided to consult a more intense protocol for my nutrition. Through my research, I came across Nutritional Solutions. I sent several blood tests to be analyzed, and they would advise me of supplements to build up my body and immunities to fight off the cancer naturally. They compare my blood to others that are beating ovarian cancer and prescribe the right supplements to bring up my nutrient level to those survivors. Because there is no cure for ovarian cancer, my best hope of beating this is to build my body up to a level of health to fight it off naturally! Often times, the treatments are worse than the cancer. Either way, a healthy body will fight harder and withstand treatments easier!
In May 2013 I had my first post treatment scan to check my progress. My nurse called to tell me that it was all clear! She did say that I had a few slightly enlarged lymph nodes that were “probably” from the chemo. It is their job to clean up the toxins! We were elated to hear the words “all clear”! But when I got the written report, apparently all clear doesn’t really mean all clear! There were actually four lymph nodes, and one spot on my abdominal wall where the implant had been removed showing on the scan. When I pressed my doctor, he said that they all measure below the active disease criteria, but he basically could not say if it was cancer or if it was not cancer! I immediately went into maintenance mode. I didn’t want the cancer to have a chance to get any bigger. I scheduled a consult at Duke University, and talked to my doctor about maintenance therapy. My doctor was very willing to provide me with a maintenance drug called Avastin. The doctors at Duke gave me the best advice possible at the time: take the summer off! Nothing was going to change much in three months, and at that time, we would rescan and then make a plan. It could show improvement! Everyone agreed that the scan was inconclusive, but my body could use a break, and so could my mind and spirit! I called it the summer of fun!
Throughout this journey, I cannot begin to share the roller coaster of emotion that consumes your mind, body and soul! I do not know how anybody experiences something like this without God. He has been my Rock and Sustainer. When I get down or fearful, I just start reading favorite scriptures that claim His promises. When faith comes in, fear moves out. Simple as that. My favorite verse throughout this journey has been Romans 12:12; “Rejoice in hope, be patient in tribulation, be constant in prayer.” I may or may not survive this disease, but I am comforted to know how the story ends. When I was first diagnosed, one of my early prayers was asking God to allow me to go through this with grace and dignity. Another answered prayer, I think.
NAMASTE HEALTH CENTER
I had seen another post on Inspire.com, regarding a naturopath from Colorado, Dr. Nasha Winters of Namaste Health Center. The writer had had great success with lowering her CA 125, and generally building up her health and immunities, through diet and supplements following Dr. Winter’s protocol. I was very interested because this was the path I was beginning on my own. I attended a retreat in November 2013 to become a patient of Dr. Winters and Namaste Health Center. In her introduction she is very clear to state that she is not there to cure your cancer, but to build up our bodies to fight it off naturally! Her approach is through wellness of the mind, body and spirit. We addressed them all, and learned how to continue with follow up appointments that examine monthly labs, diet & stress diaries. The retreat was life changing for me. We learned a lot about diet and fighting cancer, and we all left there with not only a stronger commitment to fight through natural means, but also a sense of actually being able to control something! Our body is designed to heal itself given the opportunity. I have eliminated sugar, grains, gluten, GMO’s, potatoes, wheat and I only eat organic vegetables, limited organic fruits (many fruits have too much natural sugar) and clean protein. I only cook whole foods from scratch, no processed foods! Yes, I’m in the kitchen a lot! I must say that I am enjoying this style of cooking!
I feel fantastic, and attribute this to my new healthy lifestyle. One that can benefit everyone, whether you have cancer or not. Many autoimmune diseases can be cured or at least controlled by eating this way. I am fighting for my life, so it has been necessary for me to change old habits. It is not always easy, but for me it is always right. Everyone else has to find their own “cancer” to make this a lifestyle for them. Thankfully, my husband and family support this lifestyle, and also love the food! We are definitely eating well, and do not feel deprived!
This is my story. It is the path I have chosen to fight this disease, combining conventional with alternative treatments. Anyone battling cancer must determine their own journey. My CA 125 has been bouncing between 45-80 since January 2014 (35 or below is considered normal), but my scans have all been stable, basically slight improvement from post chemo scan in May 2013. So what do you do? Just keep living! It is more about learning to live with cancer than curing it. Initially, you have more anxiety over the CA 125, but with time it gets easier. I will be fighting this for the rest of my life. But at the same time, I am living life to the fullest every day. I am sure that I am the healthiest I have ever been in my life! I told my son that the difference between me and everyone else is that I don’t know the “when,” but I’m pretty sure about the “what”….he corrected me and reminded me that nobody is guaranteed tomorrow! He was so right! I begin every day by thanking God for my health today! I eat healthy; I exercise regularly. I spend every minute I can making memories with my children and grandchildren. I am so thankful for my husband and the love and support he has shown me, for friends and family. I appreciate the little things in life, and don’t sweat the small stuff! I hate cancer, but I am proud of the person I am becoming because of it! -MARY
What a great reason to
EAT YOUR VEGGIES,