My goal is to help as many people as possible through the journey of combating chronic disease. I am a researcher by training and I like to make evidence based research more understandable for people.
I also want to be clear that “evidence based research” in the United States is created by research studies that require millions and sometimes billions in funding, a controlled environment and also a control group. That being said, I want to be clear that personal experiences can be valuable as well, especially as a movement. I have also be able to gather data from different expereinces that have produced similar outcomes for different chronic diseases including cancer.
My personal experience is very similar to many people’s, sadly, as it relates to a loved one and their struggle with cancer. Another aspect I need to discuss is how chronic disease can affect the family of the loved one as I feel like this is a topic that is rarely discussed. The issues I was having were exacerbated through this process BUT it all ends well because it all happened to make us all stronger and more useful.
My mother was diagnosed with stage III ovarian cancer in 2014. I remember that day like it was yesterday. It all started out with an issue with her bladder. When she was getting an ultrasound, they detected a large mass around her pelvic area. I remember my mom trying to play it down but somehow in my heart, I knew that it was not going to be good. She was then scheduled for surgery to remove the mass and to have a hysterectomy. All of this was “exploratory” but it ended up happening as we thought it would.
I am an only child. My mother, her sisters, her brother, my grandmother and her friends raised me. However, my mother has always been my solid rock. On the day of the surgery, I went with her. I had a 4 month old at home who was still nursing. It was a dark day in my heart. I honestly do not remember if the sun was shining or not. As we were driving to the hospital, my mother started talking to me about where all of her “papers” were. I already knew where she kept any important information so I asked her not to talk about it as I wanted to remain in the dark.
I remember my mother telling me how proud of me she was. I already knew that she was proud but hearing her say it, just brought me to tears. We got there and she was taken away. I sat in the waiting room.
Hours passed. I cannot remember how many hours passed, but I remember that we got there in the morning and it was getting late. Around dinner time, somewhere between 500pm-700pm, I started to get worried and went to ask where my mother was. They had been giving me updates throughout the surgery, however, the updates were at a surface level. They told me that she was doing very well every time they updated me. Around dinner time, I found out that my mother would be in recovery and that I would be able to see her soon, thank God!
Meanwhile, my son was running out of mothers milk and I was getting worried about getting back to him in time to feed him. He was exclusively getting mothers milk at this time. As soon as I was about to rush home to feed him and then rush back, my mothers doctor came out smiling so I was hopeful. She said that my mother did very well. But this was the only good news that came out of her mouth.
She then said that they found three masses. One that was the size of a football, one that was the size of a tennis ball and one that was the size of a golf ball. She told me that the tumors had been sent to their lab for biopsy. She then said that she suspects that the results will be stage III ovarian cancer. She explained to me that this was “very common” and that ovarian cancer goes undetected for long periods of time.
So many thoughts were running through my mind. I asked her to describe the sizes of the tumors again. She did. I then clarified what she said about the tumor that was the size of the football. She told me again and even used her hands to show me the size of the tumor. I could not wrap my head around what she was saying. I then asked her again and she told me again. I was in complete denial.
Eventually I allowed her to go. I sat in the waiting room for about an hour and a half or more in complete shock. I started to ask myself questions like “What would your mom want you to do in this moment?” So I started texting people who were asking me how she was because that is what she asked me to do. I spoke to my aunts, a couple of my mothers friends and a couple of my cousins while in the waiting room.
It was then time to see my mom before I left. I went in to see her and she was not coherent at that time so I kissed and hugged her and decided that the best thing to do was to go home.
I remember sitting in my car on the rooftop parking lot at around 900pm-1000pm for another hour or so with so many regrets. I thought that my mom was going to die. I kept saying to myself, “all mama ever wanted to do was to hang out with me and that I had been too busy because I thought she would always be there.” As strange as this sounds, this was the first time I realized that we were all mortal and that none of us would be here forever. I was 31 years old!
The next morning came and I rushed back to the hospital having not slept a wink. I had just missed the doctors’ rounds by a few minutes. I started to tell my mom what I was told the night before. She was also in shock. She explained that her doctor had told her the same thing. We just sat together for a while. I then had to return home to feed my son as I had run out of stored milk.
My thoughts at this time were that I had to be strong. I realized that I had lost faith in all things including the God that I grew up with. I relied on myself and myself only. I forgot that my husband would be willing to help. I forgot that my mom had people in her life that loved her. I felt that this was my responsibility and my responsibility alone.
My mom had always been there for me and now it was my turn to be there for her. I was in fight-or-flight mode for the next 16 months and also began to destroy my own life without realizing that had become severely depressed and very anxious.
My mom went through chemotherapy a few weeks after surgery and that began to make her weak. Seeing my mother in that state was unbearable. She was frail, she was unhappy, she was also depressed and feeling defeated.
After months of agony and depression, I remembered that I had the tools I needed to help my mom through this experience. I immediately got to work. I started using the skills I use to do my job and looked at the literature to see what had already been studied as it relates to ovarian cancer. I found out that my mom got and was going to get the best chemotherapy for this disease.
However, I also found out more about chemotherapy, radiation and surgery that I did not know before. I found out that these three treatments/interventions are the only three approved treatments for cancer in the US. I looked into “alternative treatments” as well as lifestyle implications at this time.
- I learned that cancer may be a disease of deficiency. Specifically I learned about vitamin B17 and how populations that eat high doses of vitamin B17 have zero to little cancer.
- I learned that sugar feeds cancer!
- Also, I learned that patients can ask for complimentary alternative medicine while going through their treatments and have access to dietitians, chiropractor, stress management groups or therapist, other therapies that help in recovering from this type of diagnosis.
- I learned that medical doctors do not get a lot of training in nutrition in medical school.
- I learned that plant-based diets are best for ovarian cancer patients (and other chronic diseases as well as in general for healthy people). This is because there are many nutrients, vitamins, minerals, phytochemicals, antioxidants etc. found in plant foods
- I learned that cow’s milk is not good for patients with ovarian cancer specifically or those prone to it because of the hormones in cow’s milk.
- Egg yolks are also not good for people with ovarian cancer or those prone to it.
- It is suggested that people with ovarian cancer should stay away from animal products.
- Vitamin D (Specifically, vitamin D3) deficiency is common in people with ovarian cancer
- Cruciferous veggies are great for people with ovarian cancer (Ex. cauliflower, cabbage, broccoli, bok choy, other green leafy vegetables).
- I learned about beta-glucan and how it makes the immune system stronger.
- There are options for clinical trials that are exploring using targeted cell therapies that only target the tumor or cancer and not other organs.
- …and a host of other things.
Having this information allowed me to ask questions that would help direct my mom to the best options available to her in the hospital. What we did not do is trust our intuitions in 2016. We were better able to deal with the surgery and chemo as we had grown spiritually (and had been through this before in the worst way) but we still made a decision based on some fear. I know this now as we embark on making different decisions.
My mom was in remission for 2 years and the cancer came back a third time. We have already had the surgery to remove the tumors, in October of 2018 as my mom was in pain, however, we plan on taking an alternative route to treatment and maintenance.
I decided that I wanted to help other people get the information they need in order to get the best care available to them. We all trust our caretakers, however, sometimes, time doesn’t always allow them to look for all available options. Also, their training can sometimes cause bias in the types of medications they use.
The goal of PATIENTcE is to provide the entire story so people can have all the information they need in order to ask questions and obtain the best possible outcomes for their chronic disease.
- Hypertension (High-Blood Pressure)
- Hypercholesterolemia (High Cholesterol)
- Rheumatoid Arthritis
- …and more…