Until it wasn’t.

The Pain

In February, I started having severe pain in my lower back. Initially diagnosed with a bulging disk, I started physical therapy, but six weeks later I was in even more pain. This was amid the beginning of the Opioid Crisis, so doctors looked at me suspiciously with my back pain with no clear origin. They were not going to dole out any narcotics, they told me. Plus, 80% of Americans have had back pain at some point in their lives, so why was I special?

Yet the pain just kept getting worse. My nurse practitioner kept looking at me suspiciously like I was just out to get narcotics. Except my pain was no joke. I had never been on any medications my entire life, and Advil wasn’t touching this. The pain got so bad that I kept making 3am trips to the E.R. where I would be hooked up to a morphine drip.

X-rays were taken, but nothing was found, and I was always sent home with that same suspicious look that said: there’s nothing wrong with you.

After several more weeks and several tearful phone calls with the nurse practitioner who was handling my case by subscribing nothing but physical therapy, I finally got ahold of her.

“I need an MRI. I KNOW there is something wrong with my body.”

She said it would just be a waste of $500, my copay. But finally, after several weeks of persistence, she ordered it.

The MRI

I had the MRI on April 16th, 2018. I was in so much pain, it was insanely difficult to lie on my back, and lie still. While initially the radiology tech told me I should hear back within 5 to 7 business days, after my MRI, he rushed to help me out of the machine with extra care as if I were his 90-year-old grandmother. As I finally stood up, he said, “Well you should hear back in the next 24 hours.”

That evening I got a call from the nurse practitioner, the one who looked at me the last 8 weeks like I was just out to get narcotics, the one who rarely returned my phone calls. “So, we found something on your MRI. There’s a 2 to 3 inch mass on your sacrum, about the size of an egg”

“A mass? What is that? Like a tumor?” I asked.

“Yes,” she said, “Most likely. We don’t know if it’s benign or malignant, but I’m referring you to the orthopedic surgeon…”

Benign or Malignant?

I couldn’t even think straight after that. I don’t know what I was expecting, but I wasn’t expecting this. A tumor? Seriously?

I knew tumors could be benign and that they didn’t necessarily mean cancer. Because me having cancer just did not compute. I was the girl that ran half-marathons, rarely went a day without exercise and put kale in her smoothie every morning. Cancer was for people who smoked, ate fast-food and drank excessive amounts of alcohol, all the things that repulsed me. I used to make my ex-husband eat his pizza outside; it wasn’t allowed in the house.

It had to be benign. Something the doctors would remove surgically, and then I could get back to my normal life.

After apologizing profusely to me, the nurse practitioner wished me luck and told me to call her anytime I had any questions or concerned. Funny how once she knew I had this tumor, she was suddenly reacting like I wish she would have 8 weeks ago. Even though I had just been hit with some potentially bad news, I felt a twinge of redemption: See, there was something wrong with me. I’m not out just to get your narcotics after all, am I?

By that time, the ER doctors had prescribed me Norco. Within a couple more weeks, I would get onto Percocet, and even then, the pain medication barely scratched the surface of the pain I was feeling: intense nerve pain firing up and down both legs and severe throbbing bone pain, as if my pelvis was broken. Later, I would find that this destructive tumor was eating away at the bone. It was also involving and getting wrapped up in all my root nerves that ran from my sacrum down to my feet.

The Bad News

A week later, on May 7th, 2018, the results of the biopsy came in and guess what?

“You have cancer.” Bone cancer, a sarcoma, but not just any bone cancer, the rarest of all bone cancers: Sacral Chordoma, which only affects about one in every one million. Which means there’s very little research or known treatments.

“What we do know,” said the doctor, “is that this type of tumor is slow-growing, and that means we cannot treat it with chemotherapy.” Good, I thought, I wouldn’t touch chemotherapy with a ten-foot pole. I was also soothed by the sound of slow-growing. “It’s also resistant to radiation.” Ok, I said. So surgery, right?

“Right. Surgical resection of the sacrum is the only known and proven treatment for this type of cancer.”

“Ok, sign me up,” I said. “When can we do it. Let’s get this thing out of me.” By this time, I had been dealing with intense pain for three months, unable to surf, travel, sometimes I couldn’t even drive. I was just so ready to do whatever I had to do to get my life back to normal. I was constantly high on pain medications, unable to sleep at night. My whole life for the last three months had been one long, horrendous nightmare and I was ready to get back to my life, or take the necessary steps to get back to my life.

Little did I know, I would never get back to my “normal” life.

More Bad News

“Unfortunately,” Dr. H said, “The surgery is quite invasive. It requires resection (amputation) of your sacrum from S2 to S5. Because we need to remove the sacrum, we also need to remove the root nerves which control bladder and bowel function.”

“Wait, what? Are you saying that surgery is my only option, and that with this surgery…I’ll need to wear adult diapers for the rest of my life? At 35 years old? That I won’t be able to control my bowel or bladder function?”

“Yes, I’m sorry. But surgery is the only way…” What happened afterward is a distant memory. I just melted into uncontrolled sobbing and let my mom do most of the talking.

And just in case that wasn’t enough bad news…

I would go on to get a second opinion and then a third. And then a fourth. All four doctors (3 orthopedic surgeons and a radiologist) suggested surgery. “It’s the only way,” they said. “We’re so sorry.” I also learned that I would likely have to have a colostomy, and with all the hardware that would be going into my pelvic region, I was told I most likely would never be able to surf again.

Never surf again? I don’t know what was more devastating, that with this surgery I’d lose bladder/bowel control for the rest of my life, or that I’d never surf again. I was a beach girl who lived to surf. After each and every medical opinion, a loud and defiant thought kept running through my veins over and over again like a song stuck on repeat: there’s no way I’m getting that surgery.

Find out what happens next in My Story: Part Two

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The post My Story: Part One: You Have Cancer appeared first on Cancer Free For Life.

“I’m sorry…I just heard the word ‘tumor’ and my ears perked up, and I couldn’t help but eavesdrop…but I had stage 4 breast cancer last year and am now completely cancer-free. I never had chemo or surgery. I healed through natural therapies.”

She had my attention.

Oasis of Hope

A thirty minute conversation ensued. She told me about an alternative therapy cancer clinic in Mexico called Oasis of Hope where she had gone on and off for the past year and credits their program and at-home protocol (mostly nutraceuticals) for saving her life.

She was with her husband and three small children. As we said goodbye, she said, “…and my name is Crystal, and here’s my info if you have any questions.”

“How funny,” I said. “My name is Crystal, too.” I took her information and went home and looked up this clinic in Mexico. I spoke with the doctors. But the price tag was steep: around $30,000 for three weeks of in-house treatment, including a dendritic cell-vaccine, the holy-grail of their treatment, followed by several months with an at-home nutraceutical protocol, which basically means taking a bunch of vitamins and supplements every day, up to 70 pills. I was seriously considering it. What if, I didn’t have to have the surgery?

After I went for a tour, it just felt right. UCLA still hadn’t called me about a surgery date. The treatment program here was only three weeks.

What did I have to lose? Well, besides all my money. I actually didn’t have the money so I maxed out four different credit cards and the rest I paid for with money from a Go Fund Me account my friends had set up.

Off to Tijuana I went, fingers crossed, hoping for the best. My desire to heal outweighed my desire for financial stability. What good is it to have money in the bank if you don’t have your health. Plus, at the very least, since I did have an aggressive tumor, at least this would slow it down or stop it from growing.

I have nothing but good things to say about the Oasis of Hope Hospital. It’s a welcoming, healing environment with freshly-cooked, healthy vegetarian meals, green juices and daily coffee enemas.

After breakfast, most of the day is spent getting high dose Vitamin C infusions and other alternative therapies such as Ozone therapy, heat therapy, and the best part: a dendritic cell vaccine, which has been shown in multiple studies to supercharge your immune system enough to fight off cancer. Of course, it doesn’t work for everyone.

Every day I was seen by the nurses who took my vitals and the oncologists I had a chance to meet with a couple times a week. I met some beautiful people there and formed solid friendships. One woman in particular, Jackie and her husband, I really connected with. If I missed the cooking class because I was in treatment, Jackie would bring me the dairy-free date brownies they had made.

I noticed Jackie also walked around with books by Deepak Chopra (Quantum Healing) and Joe Dispenza (Becoming Supernatural). “Oh, you have to check out Joe Dispenza, she said. “Whenever I’m feeling down, I just watch his videos on YouTube and it’s like a switch from sad to happy.” I made a mental note to look him up later.

CT Scan

Two weeks into my treatment, I don’t remember what the reasoning was, but the doctors decided to give me a CT scan. I expected it to be smaller because I was feeling good. I even kept accidentally forgetting to take my pain medication.

Plus, here I was in this state-of-the-art hospital getting natural chemotherapy (high dose Vit C), downing green juices, having daily coffee enemas along with other cutting-edge treatments like HBOT and other oxygenated therapies. I was even surfing.

Yes, I brought my surfboard to a cancer clinic in Tijuana. Because it was right on the beach, and there were waves, and it was August. My pain had subsided enough by that time, or maybe the pain meds were just doing a better job, so that I could surf small waves. The doctors and pretty much everyone else got a kick out of it. The doctors would look at my MRI and then back at me. “How is that you’re surfing?”

I knew I stood out walking in and out of the hospital with a bikini and a surfboard. When I’d go in for my treatments, the medical staff kept mistaking me for someone who was there simply accompanying a patient, instead of the actual patient. In every part of the hospital for the first two weeks, I was told “this area is for patients only.”

“I AM the patient,” I would insist. I just didn’t look the part.

When the results of the CT scan came in, I was in shock. The tumor had increased in size. “Perhaps we’re slowing down the growth,” the doctors said. But I was in tears. I didn’t have any more room in my body for this tumor. Why was it still growing? More fear poured into me.

Another Option

Towards the end of my last week, I had a final meeting with the oncologists on site: Dr. Contreras and Dr. Cecena, both renowned American-educated oncologists whom I respected. From the beginning, they weren’t fans of this morbid surgery. What I didn’t realize was that they had been doing some research on my behalf.

They told me that day that they’d uncovered some studies of Chordoma patients who had undergone Proton Beam Radiotherapy as an alternative to surgery. They told me Proton Beam Therapy was an alternative form of radiation, explaining how it was more targeted, and thus much better than traditional photon radiation.

However, because Chordoma is such a radio-resistant tumor, the only catch was that very high doses of the protons are necessary. And according to the studies, the survival rates are just as good as those with surgery as long as high doses (77Gy) are used. Plus, they told me, the proton beam therapy has a synergistic effect with the dendritic cell vaccine.

This wasn’t the first time I had heard about Proton Beam Therapy as an option. But when I had brought it up to the orthopedic oncologists, all three dismissed it as something that did not have good results. If I chose this route, “I would likely die within five years” they said.

Proton Beam Therapy had not been around for very long which is why there were very few studies or cases on treating Chordoma with it in the absence of surgery. However, some small scale studies had been done on people who either refused to have the surgery, or were just too old for their bodies to handle the surgery, so they took on the next best thing: high doses of proton beam therapy.

So that’s how I decided that I would do Proton Beam Radiotherapy instead of surgery. On my last day at the clinic, the doctors at UCLA called telling me they’d scheduled my surgery for the following week. I called them back and told them, I’m not doing the surgery. There’s a new treatment in town and his name is Proton.

*Update (2025) 

I went to Oasis of Hope in 2018, and I still think it is an amazing place that can contribute to overall healing. I’m also still happy with my decision to go (despite the enormous price tag) because it the oncologists there opened up my eyes to an alternative to surgery (proton-beam therapy). However, having said that, five out of six patients that I stayed in touch with after my stay have passed away. Everyone who passed away had different stages of disease, some had gone the traditional route, others had not. So they may have passed away anyway.  Having said that, I probably would not be comfortable recommending alternative treatments like those at Oasis of Hope to anyone as a replacement for traditional medical treatment. It’s a very individual decision, and my only recommendation is to do what feels right, to listen to your intuition. 

Continue to My Story: Part 4

The post My Story: Part Three: Oasis of Hope Cancer Clinic appeared first on Cancer Free For Life.

I immediately liked Dr. Urbanic and felt like I was in good hands. I could tell he cared about me as a person and didn’t see me as a medical record number. I liked that he took my lifestyle into consideration and desire to still surf and be active. 

Treatment Protocol

I would come in for eight weeks of Proton Beam Therapy, five days a week, Monday-Friday. I would be zapped with 77 grays, the dose of radiation. The typical radiation dose for cancer patients undergoing treatment hovers around 45 to 60 grays, but still, I had no idea what I was in for.

I was already in so much pain and by that time had switched from Percocet to morphine. There’s no way that my body could tolerate more pain. I was a 10 out of 10 whenever anyone asked, which was often. I was told that I might experience something like a bad sunburn on my skin and possibly some diarrhea.

The Pain and Side-effects

But by the fifth day of Proton Beam Therapy, I could no longer walk. Or sit. Or stand. When I sat, the pain was unbearable. I could only tolerate it for about twenty seconds. Standing caused all the nerves that ran up and down my legs to fire up. It was like being zapped or shocked endlessly, as if my nerves were going haywire. I could stand for only about 90 seconds.

I never had diarrhea, and the “sunburn” that was supposed to be the worst part was nothing compared to the internal bone pain and the nerve pain shooting up and down both legs. The bone pain felt as if someone had taken a bat and beat my sacrum repeatedly. The nerve pain felt like someone was slicing my nerves open with a sharp knife.

Unable to Walk, Stand, Sit

I remember trying to make myself a smoothie one morning. Once I made it to the kitchen, I put in the fruit and the protein powder and then would quickly go to the living room and lie down on the floor (always on my stomach) to alleviate the pain. After a few minutes, I would get up, put in the almond milk and sometimes the chia seeds too, if I could make it standing that long.

I usually had to lie down on the floor two or three times before I could finish making my smoothie. From then, it would be several months before I could stand up long enough to make my own meals.

Getting out of bed in the morning, I felt like a 95-year-old woman as I wiggled my body in the perfect position to slowly dismount one toe at a time. With both feet planted on the ground I would slowly rise up to standing, grimacing in pain, one vertebrae at a time. I would see others’ heartache at the site of me trying to stand up, a once-athletic, once-vibrant, 35-year-old, suffering from so much physical pain.

I also remember not being able to stand up long enough to take a shower, but I couldn’t take a bath either because the skin above my sacrum was so badly burned. I ended up taking showers sitting on my knees. Awkward, I know. Also, awkward was getting to and from treatments in the car. I had to lay down on my stomach in the back. This was pretty much my position 23 hours a day: laying down on my stomach. Anything else was pure torture. I could sit on the back of my heels on the floor which I would do often for about 20-30 minutes of the time.

Quitting

By the time Monday came around, my second week of Proton Beam Therapy, I quit. I just couldn’t bring myself to get in the car and walk into another beating.

I sent Dr. Urbanic an email. I’m in too much pain, I wrote. Can’t make it. Won’t do it. Nope. Sorry. This is not right. After a few phone calls, he convinced me to come back by telling me he’d increase the pain meds and put me on steroids, and I reluctantly agreed. More morphine and now a strong steroid (6.0mg Dexamethasone). But it still took every ounce of strength to walk through those doors to the California Protons Center for each subsequent treatment. But I did it.

In October, about four weeks into my treatment, I moved in with my Mom and Dad. Around this time, the pain started getting worse. So I quit again. I told my mom, I’m not going. I’m not getting in the car. I then sent another email to Dr. Urbanic reiterating that I was in too much pain. I needed a break at least.

He called and called. Then a few other doctors started calling. I finally took his call. “We can hospitalize you if we need to, but we need to get you through the treatment. You can’t stop. You can’t take a break. I’m worried that if you stop this, there will be no other way to treat it.”

By then I had learned that surgery was out since most surgeons can’t operate on damaged post-radiation skin, especially with this high dose because the skin is so damaged that the wound won’t close. Having an open surgical wound, or a wound that won’t heal is an invitation to sepsis and subsequent death.

Increase in Pain Meds

So I succumbed and continued with the treatments. My morphine dose went up again, and by this time I was on 180mg of morphine each day. In total, I was taking 9 different pain medications. You can imagine how fuzzy my mind was at that time, so forgive me if I don’t remember all of them, but some of them were Flexeril, Gabapentin, Dexamethasone, Tramadol, Effexor, Cymbalta, and Dilaudid, another narcotic on top of the morphine. Most of these were at the max allowed dose.

Around that time, my mom came home from the pharmacy with something called Narcan. “What is that?” I asked. “In case you overdose,” she said. “The pharmacist and the pain management specialist thought we should have it on hand in case…”

That’s when I realized that by taking so many pain medications, I was risking my life. I’d learn later that this was normal for cancer patients. There’s a delicate balance, a fine line between relieving pain and risking death from overdose, or irreversible damage to the body, not to mention the potential addiction to opioids.

The eight weeks of proton beam therapy were blurry, to say the least. I used a walker to walk into my treatments. I couldn’t sit in the waiting room chairs, so the nurses would lead me back to an empty room where I would lay on a bed, waiting for my treatment session. Each day, I made a big red X on my calendar, counting down the days.

Deep Depression

At times, in so much pain, I prayed to not wake up in the morning. I often wondered if I should have just had the surgery because anything would be better than this. Now struggling with depression, I told God that if I could ever free myself of pain again, I would live my life to the fullest. I could have a good life if I were just out of pain.

At this point, I could deal with having cancer, with not being able to surf or walk again, but I could not deal with this level of physical pain. I wondered if I would ever be off of narcotics or whether I’d have to be on them for the rest of my life, like many other chordoma patients I had met through a Facebook group.

Finally, after eight weeks, I completed the treatments. To celebrate the completion of the treatment, the staff (who was amazing and supportive) awarded me with a medal.

And the Tumor?

Every week I was having CT scans to check on the progress and every week Dr. Urbanic told me the same thing: it’s about the same size; it hasn’t shrunk. And each time, my heart sank. What I wanted so desperately to happen wasn’t happening.

Even worse, what I would find out later was that the tumor was actually still growing, little by little. Proton beam therapy had only slowed down the growth, not stopped it.

I could understand to some extent why he didn’t tell me it was still growing. The growth was probably too slight to see on a weekly basis. It also could have been inflammation, rather than actual growth. But one thing was for sure. By the end of my eight-week treatment, the tumor had not shrunk. I felt do defeated. But there was still hope that because radiation is cumulative, it could shrink in the coming months.

This was a very dark, dark time for me. I thought a lot about death. About my family. About what’s important and what’s not. My body was also overflowing with fear, depression and anxiety. Despite the darkness, I still held onto hope that it would shrink. My next MRI would be in three months, in February 2019. It had to get smaller, it just had to.

Continue to My Story: Part 5

The post My Story: Part Four: Proton Beam Therapy appeared first on Cancer Free For Life.