Hello friends,
Everyone keeps asking me if I have a surgery date yet, and the answer is no. But it turns out that this could be a blessing in disguise. You may or may not subscribe to the idea that everything happens for a reason, but I think there's a reason why my surgery has been delayed, perhaps divine intervention, and rather than freaking out and calling every day to demand a surgery date, I took it as an opportunity to explore some other options that weren't available for me a few weeks ago.
Towards the end of July, UCLA told me that the surgery would most likely be early to mid September. At first I cried at the news, balling my eyes out, at having to wait more than a month for for my healing journey to even begin. Plus the fear that this aggressive and fast-growing tumor was invading organs, possibly adding to the nerve damage and the amount of bone and nerves that would have to be removed in surgery. But then, I took a step back and realized that over the last three weeks, there has been some big changes for the better.
Starting mid July, I was starting to feel less and less pain. I was no longer walking around my house with ice on, or laying in bed with a heating pad, nor having to have 3-4 ice packs on my lower back and the back of the legs in order to fall asleep. I was no longer waking up at 3am in pain and having to take pain medication. I was now sleeping throughout the night. In fact, I started to feel like I no longer even needed my pain meds. So after 4 months of taking the maximum dose of oxycodone, I was able to cut my dose in half. This was so different than just a few weeks ago when I'd count down the minutes until I could take my next pain pill to find some relief. I would rarely leave the house for more than an hour or two because I wanted to be close to my ice packs for some pain relief. But I began getting out of the house more, going on long day trips with friends, and on Aug. 6th, I surfed for the first time since February, with absolutely no pain afterwards. I still had some pain flare-ups, but now they happened about once a week, instead of every day. I started to wonder if my tumor was also shrinking.
So why this drastic reduction of pain? I can't say for sure, but what I suspect is a few different things that I started doing in July: Vitamin C IV's, plant-based ketogenic diet, CBD oil, plus the fact that my ex-boyfriend from El Salvador came to visit me because he wanted to be by my side and help me through a difficult time. He'll be here for 3 months. It could have been one or all of these things combined. But anyway, because I was no longer in much pain, with the delay in surgery, on August 5th, I decided to go down to Tijuana, Mexico for 3 weeks of alternative cancer treatments at an in-patient hospital called Oasis of Hope. I had been exploring this option in June when I was initially diagnosed, but when the pain became too much to bear, I felt that I didn't have time to explore this option, nor the luxury of a failed response to the treatment.
I first heard about this place in June while I was having lunch with a friend at Cafe Gratitude. I was talking about my diagnosis when suddenly a woman sitting at the table behind us interrupted and introduced herself telling us her cancer story. In a nutshell, 9 months ago she had stage 4 breast cancer. Now, she was completely cancer-free because of the treatments she had received at an alternative cancer therapy hospital in Tijuana, Mexico called Oasis of Hope. She had zero chemotherapy, radiation or surgery. Her cost of treatment was $26K. I went home that day, looked them up on the internet and inquired for more information. A week later I had a treatment proposal with a $30K price tag and spoke to the doctor, Dr. Contreras. I was discouraged by the phone call because he admitted that in the 55 years the hospital had been around, they had never treated a patient with Chordoma, and could not make any promises about whether the treatment would work or not. (They actually can't make any promises for any cancers, but they have a lot of success working with most common types of cancer)
Soon after that phone call, in June my pain started to worsen, I found out that the tumor had grown a lot within 2 months, so overwhelmed with fear, I forgot about Oasis of Hope, and I relented to surgery. I got over the devastation of having to get the surgery and just wanted it to happen as soon as possible. I stayed focused on the surgery until this major delay made me think twice. Plus, as I mentioned, by the end of July, my pain was becoming hardly noticeable to me. I figured that if I pay $30K, and the treatment doesn't work, at least I can go into surgery knowing that I tried everything; that I did everything in my power. Yet if I don't try this route, and just have surgery, I will always wonder IF it would have worked, IF I could have avoided surgery. What if? What if? The idea of not trying absolutely everything in my power to heal my body and avoid a painful surgery which will amputate my sacrum and cut off my nerve roots, a surgery that may limit my ability to surf, run or do other things just didn't sit well with me. I didn't think too much about the price. When you are facing a life-threatening illness like cancer, money and hefty price tags don't matter anymore.
So, August 5th Mutsu and I came down here with our surfboards and started the treatment plan. The treatment center is only 2 blocks from the beach. Thanks to the Go-fund-me-page, and your generous donations, I had some money to go towards the cost, but the rest of the money went onto 4 different credit cards. I would worry about how to pay for it later. Right now I just wanted to focus on the treatment. I know a lot of people will scream "quackery" or "scam", but I had been praying a lot for guidance from God, and I believe that it was not just a random coincidence that a random woman, whose name I later found out is also Crystal, told me about this place. Also, I think we are limited in the United States to surgery, radiation and chemotherapy due to the power of pharmaceutical companies and lobbyists, the "medical mafia" (as it's called here).
When I first arrived, I was comforted to see people from all over the world: Australia, Canada, Tennessee, Iowa, Colombia, etc. Many of these people are on the second or third rounds of treatments with amazing results. Many people came to find that after 2 or 3 rounds of treatment (coming back every 3-6 months), they're tumors are completely gone, or that they've had a significant reduction in the primary tumor site. I've met one woman who was told by her doctor that she only had 3 months to live. She told me that on her previous visit she was in a wheel-chair, and now she's walking perfectly. She said the hospital advised her against coming because her lymphoma was too advanced. She came anyway, and the doctors are all surprised that the treatment is working very well. I met another woman from Australia with ovarian cancer, who during this visit, her 3rd round of treatment, found out that she had absolutely no evidence of disease. I also met a woman who came down here the first time 4 years ago to treat breast cancer, and after 3 treatments within 1 year, she was cancer-free. She now just comes once a year or every 2 years to do the treatments as a strategy to keep the cancer from coming back.
I'm now (at the time of writing this) two weeks into my treatment, but it takes three months to see the effects and know whether the treatment is working for you. I'm not really sure if I have the luxury of waiting 3 months, but even if I still end up having the surgery, I believe the treatments here will help me heal faster and have fewer complications than if I hadn't come simply because the treatments work to strengthen your immune system.
The treatments can also be referred to as immunotherapy. Immunotherapy aims to enhance your own immune system to help you fight the cancer naturally. There are many treatments that go into the overall treatment plan, but the hallmark treatment is the dendritic cell vaccine. Basically, some of my blood is taken during the first week and cultured in a lab. In the lab, they add immature dendritic cells to the sample and place the blood back into your body. Because I'm not a scientist and don't have a complete understanding of how it works, one metaphor that many of the patients here use is they are adding cancer-fighting soldiers to your blood. They train the soldiers in the lab and then place these soldiers back into your bloodstream and the hope is that they will find the cancer and attack. LAK (Lymphokine-Activated killer) cells are also inserted into your blood. LAK's are also like soldiers. They are a white-blood cell that has been stimulated to kill tumor cells.
The first two weeks of treatment focuses on IV therapy of high dose Vitamin C, Vitamin B-17 (illegal in the U.S.), Vitamin K. Also, there is ozone therapy where they take some of your blood out, oxygenate the blood, and then put the blood back into your body via IV because cancer cells hate oxygen. Hyperthermia, where you climb into a chamber with a special astronaut suit and have your core body temperature raised to an insane amount. It's quite uncomfortable. Think of having to sit in a sauna times 10. I also take about 30 pills a day, most of them are nutraceuticals and supplements. The third week is just the vaccine.
I meet with a doctor pretty much every day, or every other day as needed. The nurses come and take my vital signs three times a day. My blood work has been carefully monitored, and I had to lower the dose of Vitamin C because I have a low hemoglobin count. I also had to stop doing the B-17 IV because I had an allergic reaction. I've had my blood taken, tested and analyzed three times because they found that I was anemic upon arrival. My blood work is good and improving each time.
I've been surfing, going to the beach, making friends with the other patients and enjoying my time. Ever since the first day here, I've had a good feeling about this place. Not only that, but the evidence that other patients from around the world and the success that they've had makes me hopeful. Dr. Cessenia has told me, not every patient that comes here successfully responds to the treatment. Some tumors are very resistant and stubborn and continue to grow despite all the treatments. In those cases, they offer chemotherapy and surgery and even do it for some patients here at the hospital. My hope is that my body will respond to treatment and that I can avoid having an invasive surgery. Thank you for all your thoughts and prayers. I'm feeling good!
Wednesday, August 22, 2018
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