Proton Beam Therapy

Hello friends! I want to dedicate this post to talking about Proton Beam Therapy and how my treatment is treating me.

First of all, Proton Beam Radiation therapy (PBT) is a more targeted form of radiation that uses protons instead of photons. The big benefit of PBT is that the dose will not go beyond the tumor and damage surrounding tissue. This type of radiation is most commonly used with brain tumors, but other cancers such as breast and prostate cancers can also be treated with PBT.

I am doing definitive radiation, which means radiation only--no surgery. The unfortunate thing is that because chordomas are such resistant tumors, it takes very high doses (77-80Gy) to treat the tumor with definitive radiation. As far as side effects, I was to expect a severe "sunburn" by the time radiation is finished. There were other side effect mentioned as we were going over the paperwork. Less likely side effects included damage to the colon, nerves, ovaries, etc, There are no guarantees and even though this is a more targeted radiation, side effects can still be severe and at times, devastating. However, there were still less chance of encountering these side effects with radiation than with surgery.

I asked about the worst case scenario. What would be the worst that could happen? My radiologist stated that the worst case scenario is that it continues to grow right through the treatment, but that is very, very rare, he assured me.

I read in one article that most patients can work throughout their treatment. You just come in for 30 minutes each day Monday-Friday, get your zap, and go back to work. Easy. Sinch. I spoke with four other Chordoma patients who I found through Facebook that had also done proton beam therapy. All four of them told me that they were happy with their decision to not do surgery. They suffered very few side effects from the treatment, and were living their lives happily.

After we went over all the side effects, the radiologist mentioned that at the start of treatment, there sometimes is an inflammatory response, some swelling that may cause pain for some people. If that's the case he prescribes a steroid (prednisone) for a few days just to ease the swelling. But he didn't see that happening in my case. The worst was just to expect a painful burn at the radiation site (sacrum) towards the end of treatment. I signed all the papers, and was ready to start treatment. My treatment dose would be 80Gy (extremely high for radiation) for 8 weeks, Monday through Friday.

I had no idea what I was in store for.

Nobody, not even the doctors, expected me to be in THIS MUCH PAIN. The first week was fine, but towards the second week I started to feel as if someone was swinging a bat at my lower back. So with reluctance, but wanting relief from the pain, on to steroids I go. On Friday of week 2, I didn't show up for treatment. I was having a hard time. Pain, sciatic pain. Was I supposed to be in this much pain? Is this my body's way of screaming that I'm on the wrong path? If this is what I'm feeling in week 2, how will I be feeling in week 8? How will I make it through?

On Thursday of week 2, I told my oncologist I needed the day off and I'd be back Monday. I expected the pain to get better over the weekend, but it didn't. It got worse. The steroids weren't helping me out. This is mostly nerve pain. After trying everything to relieve pain...meditation, guided imagery, hot baths, CBD, THC, upping my dose of narcotics, taking them more frequently, until, I couldn't take the pain. Nothing was helping, so I ended up in the ER at 2am.  I was put on morphine for 3 hours which was total heaven. I finally had full pain relief for the first time in weeks. I didn't want to leave, but I knew Mutsu was tired,  just sitting in a stiff chair after watching me sleep like a baby for 3 hours.

We went home Sunday morning. By Sunday afternoon, the same pain was back. Mutsu drove me to the ER and on the way there I started stating affirmations "I'm feeling better. I'm feeling better. I'm getting better" over and over. By the time Mutsu pulled into the parking lot of the ER, I WAS feeling better. The edible that I had taken a couple hours ago had just kicked in. I got out of the car to walk around for a few minutes and said, "no, take me back home". I figured I could just try to get through with more edibles.

Come week 3 Monday, I wake up and swear that I can't do it anymore the pain is too intense. I can barely walk. Every step is painful. I can't stand for more than a couple minutes. I try making myself a smoothie, then half-way through having to hobble over to my bed for some relief. I can no longer make meals for myself, or do anything that involves standing for a long time, or walking more than a few steps. I feel like my 35 year-old-body woke up the next day with a 95 year old body.

Nevertheless, I drag myself to the car and go anyway to PBT. They see me limping and send me to the nurse before treatment. I then met with the doctor whose solution is dexamethasone, a heavy duty steroid. He prescribes it for just 4 days to get the tumor swelling down fast. I asked him, "Should I still continue with the treatment? Is this too much?" He advises me to soldier on with the radiation treatments because interruptions in the treatment make it less effective.

Tuesday, I wake up and tell myself, "there's no way I can do this anymore". The pain is too much. But after a few hours, I'm feeling a little better. So I go. After treatment, I met with another doctor (my doc is out of town). He told me I was right for choosing PBT....the surgery is awful. He was convincing me to stay, saying that this is the best chance for cure, for success. Keep taking the pain meds. Everything's going to be alright.

I met with the dietician, Kate, who I meet with every Tuesday. We talk about anything except food. In our first session, she just wanted to make sure I was getting enough protein, good quality proteins for healing, and the rest of the time, our sessions have been more like psychotherapy. She asks how I'm feeling emotionally, and I just let it all out. The tears, the worries, the fears, the ups and downs. She convinces me to keep going. "Just surrender to the experience".

Wednesday is just like Tuesday. I limp through the doors of the California protons center holding onto Mutsu. The nurse, Melissa is really starting to become concerned. I meet with the doctor again after treatment who wants me to stay on the heavy duty steroid instead of tapering it off. He's convinced that it'll help with the pain. So far it hasn't been helping me, but I don't want the pain to be worse if I stop taking it. From meeting with the docs, I start to get the feeling that the pain might not go away so soon. It may take longer than I had expected for it to shrink.

Initially I was told by my oncologist that he expected me to be feeling less pain in 2-3 weeks, but here I am in much more pain. The pain they attribute to the inflammation, the fact that the tumor is so big and pressing on nerves.

Friday morning, I wake up after having only gotten 2-3 hours of sleep that night and write an email to my oncologist telling him that I quit. I can't take it anymore. My body can't take it anymore. My pain is worse every day.

After a few hours, he calls me, says he's gotten a hold of my Kaiser primary care doctor, and the pain management doc from Kaiser and was able to get me a prescription for morphine. I really didn't think it would make a difference. Every pain medication that I was given didn't seem to do much. But I figured I'd try it.

It helped. Not a lot. I still have trouble standing for more than a few minutes, but I can get up much more easily and walk a little more without the pain. I am having much less sciatic pain. Mutsu noticed a big difference in my mood as well. I still feel confined to my bed, but things are looking up and it's doing a lot for my morale.

Prior to last week, I was walking an hour a day, doing yoga and meditating. Now I can barely walk. Standing for more than a couple minutes is difficult. But I'm having lots of friends come by and lots of help to help me get through this. I can only take it a day at a time. I can't think about the future right now.

Last Minute Detour! Surgery OUT. Proton Beam Radiation IN.

Chordoma, a very rare bone cancer, is a difficult beast to treat. It doesn't respond to chemotherapy, so that was never an option for me, nor was radiation since the location of the tumor (my sacrum) is too close to prime real estate (colon, nerve roots, bladder, rectum, ovaries, etc.) So, the only option I was ever given by my oncologists was surgery. "You have to have surgery. It's the only way", as my oncologist told me firmly the day I was diagnosed.

My initial reaction was a feeling that my oncologist was wrong. I had heard plenty about success with alternative or holistic treatments and I was a big believer. 

However, after the tumor had grown to be as big as a grapefruit, major fear set in and, as I mentioned in my previous post, I felt like I had no other options, especially with so much pain. I just wanted to get it out of me. But then, with all the delays in surgery, and the fact that it was taking so damn long for UCLA surgeons to put a date on the calendar, I started second-guessing the surgery option, and that ultimately led me to seeking treatments in Mexico. 

Even at the time of going down to Mexico, I figured that I was probably still going to have surgery. But a funny thing happened in Mexico, as funny things do tend to happen in Mexico. About one week into the treatments, the head oncologist, Dr. Contreras  asked to see me. With my IV bag still full of Vitamin C, I was escorted up to his fancy office on the 5th floor. A large corporate board meeting looking office. This was the second time I had sat across from him. Our first meeting, two days after my arrival, he had very few words for me. He kept shaking his head. My case was complicated to them and difficult to advise on. It wasn't so much that they had never had a patient with Chordoma, It had more to do with the fact that I had a very large and aggressive mass impinging on nerves, and an upcoming surgery that they were afraid to suggest delaying as they admitted that some cancers are stubborn and not all respond to their treatment. Yet I could see that he also had a hard time suggesting that I go through with the surgery. Not just any surgery. This surgery. 

So what exactly does this surgery involve? Let me spill the beans. It involves amputating my sacrum, severing most of my nerve roots and thus, total incontinence, cutting off my ability to have normal bowel and bladder function, with leg weakness and permanent neuropathy, oh and not to mention, possibly debilitating pain for the rest of life due to the fact that "sometimes nerves hold a grudge". Plus, the real possibility of a colostomy (google it. I had to. It's not pretty.), wound infection, sacral fractures, blood transfusion, etc. Later with the specialist at UCLA, there was the hardware. Rods and screws in my body for pelvic stability that would make it difficult for me to surf again. And on Aug. 20th, I learned what the real need for the plastic surgeon was. He would be there to take one of the two large core abdominal muscles that run down the front, detach it from my abdomen, and flip it through to the back side so that there would be enough flesh between the hardware and the skin. And the real kicker is that even after all that surgical nonsense, there's still a 40% chance of it coming back. 

So here, in Tijuana, Mexico, during my second week there, Dr. Contreras (who is also a surgeon and an oncologist) looks at me and says, "Have you considered proton beam therapy?"And I had. It is a radiation treatment that is usually used after the gruesome surgery to make sure "they got it all". It's used only for certain types of cancer (think brain cancer) in which traditional radiation would be too risky. Proton beam radiation is more targeted and does not exit the tumor like traditional photon radiation.

When I visited UCSD radiology oncology to inquire about it as a treatment option instead of surgery, the radiologist deterred me stating that surgery, and then proton beam therapy was my best bet for long-term survival according to all the studies. Well, the few studies they have. His reasoning: There haven't been any long-term studies on using proton beam radiation therapy instead of surgery to treat this, nothing beyond 5 years, so he couldn't recommend it for me. Plus, you have to use very high doses of proton radiation in order to treat chordomas with proton beam therapy only, which makes it very difficult for you to have surgery if it comes back. He also stated that proton beam therapy is better for more elder patients who are in their 70s and 80s and would have a harder time recovering from the aggressive surgery. I asked at UCLA and they also told me that it's almost impossible to find a surgeon that would operate on a patient after having only proton beam therapy (if it came back) because the would won't heal. They've tried, and it just doesn't heal. 

Dr. Contreras, however, told me that their treatment, the immunotherapy, or more specifically, the dendritic cell vaccine, coupled with radiation actually works well together. They actually work synergistically. Wow. I had no idea. Afterwards, I became busy researching whether it was true, reading a ton of scholarly articles trying to make sense of them. Despite not understanding all the medical jargon, the gist for all the articles that I read was the same. Radiotherapy and immunotherapy work together in tandem. I asked two other doctors who agreed and did their best to explain to me how it works, drawing pictures and visual representations of T-cells, apoptosis and antigens and all that. Then, during the last week at Oasis of Hope, Dr. Contreras and Dr. Cessenia, the 2 head doctors met with me for a final review before I was to go home. Dr. Contreras looked me straight in the eye and said, "If you were my daughter, this is what I would recommend". ("This" meaning the proton beam therapy and their immunotherapy treatments together instead of surgery.) 

A few days prior to this, I had finally gotten that call that I had been waiting and waiting and waiting for. My surgery date. August 31st, about one week away. Wow. But I still had to make sure of a few things before I canceled it. First, that my insurance would completely cover it. Second, that the radiologist at UCSD would still treat me even though he recommended surgery. And third, that I was still 100% sure that this is what I wanted to do. The clock is ticking. Decisions are rough. 

Long story short, affirmative to all three, but the radiologist wanted to do an MRI and a CT scan to get an assessment of the treatment and make sure there weren't any red flags in which he would want me to reconsider surgery instead of radiation. We made the appointments for that on Friday, Aug. 24th, one week before my surgery date, and he told me he'd get back to me by Monday on whether everything was a green light for the proton beam radiation. So I was to hold off on cancelling my surgery until then. 

Monday comes and he gives me the green light. That evening, 5 days before I was due to have surgery, I made the monumental decision. I cancelled it. Wow. Even now, a week later, I'm still haunted by the decision. It's hard not to go there and think, what if, what if? What if I would have had a better result? What if I made the wrong decision? I may never know.

80-90% of sacral chordoma patients choose the surgery. Most Chordoma experts would disagree with proton beam radiation in place of surgery, reasoning that given my age, my best odds for long-term survival is to have the surgery, since the radiation only approach has a higher re-occurence rate, though it's not that much higher. Yet, they don't say anything about the quality of life. I'm rolling the dice and choosing quality of life over quantity. I feel as if the surgeons, in order to get negative margins, would cut off my left leg and re-position my right leg in the middle and declare proudly, "We got it all!" without saying anything about the quality of life. I don't know the future, but I don't expect this to come back. Plus, with the immunotherapy treatments I had in Mexico, I'm hoping for good results.

I'm done reading the research and racking my brain over statistics involving my supposed fate. Statistics don't apply to me. I'm no doubt younger and healthier than the average person included in statistics of chordoma patients. Most are in their 50's or 60's when diagnosed. At the end of the day, I have to go with my gut. Plus, it's strange isn't it? The fact that my surgery kept getting delayed opened up a window of opportunity for the Mexico treatment ,which led me to reconsider proton beam and combine it with the immunotherapy treatment in Mexico. Plus, I still think it's significant that a random woman at Cafe Gratitude approached me to tell me her story about being cured of her cancer at the Mexican hospital, Oasis of Hope. And then I found out her name was Crystal! Was that not a sign? Or was it?

As of now, I haven't started my proton beam therapy treatments, but I will be starting them this week! I pray that everything goes well. In a separate post, I'll go into more detail about that treatment.

Please leave me a comment! Comments make me happy!! :) 

Oasis of Hope

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!

In the meantime...

Hi Peeps!

So, still no surgery date. Sigh. New proposed surgery date is mostly likely going to fall at the end of August, early September.

Apparently, the best plastic surgeons are on vacation in July, and since my surgery requires a plastic surgeon on the team, I'll have to wait. The UCLA team doesn't seem to be concerned by the fact that I have a large monstrous and aggressive tumor capable of invading other nerve roots that would lead to further incapacitation. It also doesn't help that the administrative assistant to Dr. H resigned and a new one stepped in.

For the last couple weeks I thought it was Kaiser's authorization that was holding the whole thing up. But no. Dr. H didn't even send his request for authorization until 10 days after our consult. Then, it was authorized by Kaiser within 3 days. Then, there's no admin assistant to speak to at UCLA because one resigned and another had to be replaced. And then, that's when I found out that the plastic surgeon who Dr. H wants to work with is on vacation for another two weeks.

So, I've asked if there's another plastic surgeon that could fill in to hurry the surgery along, and she'll get back to me on that. In the meantime, I've decided to remain calm and try to focus on what I can do instead of trying to force an outcome that may or may not be favorable. I'm assuming that a surgery date asap would be better, but could getting a less experienced plastic surgeon with an earlier surgery date hurt me??? Would it be better in the end to wait and get the plastic surgeon specifically assigned to my case? I don't know...

In the meantime, while my surgical team is sipping Mai Tai's on some beach, I've been keeping busy trying to do everything in my power to halt, inhibit, slow down the tumor growth. First and foremost, I started going back to the naturopathic clinic to see an integrative oncologist who has convinced me to cut out all sugar and carbs, going on a clean ketogenic diet. No fruit, no chocolate, no bread, no brown rice. Sugar and glucose feed cancer cells. I am trying to get in as many greens and vegetables in as possible. Second, I'm taking Vitamin C IV's three times a week at the clinic. I've also added a few more supplements to the 20+ supplements that I'm already taking at the request of the naturopathic doctor (cur cumin, melatonin, fish oil, medicinal mushrooms, etc.) I'm doing reiki, massage, acupuncture, infra-red saunas, meditation, CBD, journaling. I'm trying to stay stress-free as much as possible.

One great thing is that I've been sleeping better, sleeping through the night most nights, and not waking up at 3am in pain reaching for my pain meds. I have had a couple bad days that have kept me in bed, but for the part, my pain has been subsiding. I notice that I have a bad day with pain when I get off schedule from my pain meds. I also have times when I am just feeling really good, so good that I convince myself to skip the pain meds, or to start taking less. That usually results in a flare-up. So, I've learned I've got to stick to a schedule. Also, I've learned that to avoid pain, I need to avoid sitting too much, esp. driving too much. That means staying active through the day, skipping restaurants that tend to take longer, and laying down to relax instead of sitting.

That's the latest...

My Story at a Glance

My Story:

• Nov. 2017: Started having moderate lower back pain. Pain went away after 2 weeks with a chiropractor. 
• Feb. 2018: Back pain returned, but more severe 
• April: 2018: I got an MRI and was told there was a "mass" of 2-3 inches on my sacrum. The size of an egg. 
• April 2018: Got a Biopsy 
• May 7, 2018: Found out the "mass" is cancer. Was diagnosed with "Chordoma" (a super rare bone sarcoma). Surgery date set for July 2. 
• June 20, 2018: I requested my doc at Kaiser for a referral to see a Chordoma specialist at UCLA, but my request was denied.  
• June 26: Got pelvic MRI to prepare for surgery. 
• June 28: MRI came in. Tumor had grown to be the size of a grapefruit. Local surgeon from Kaiser throws in the towel (saying surgery is going to be more extensive now) and approves my referral to see a specialist at UCLA. July 2nd surgery is cancelled. 
• July 9: I visit Dr. H at UCLA  
• Aug. 5th: Checked into Oasis of Hope (cancer treatment hospital) 

UCLA Visit

Hello peeps!

*Exact surgery date is not known at this time, but they are thinking at the end of July, early August.

 First and foremost, a little background on the UCLA doctor. Dr. Hornicek and his nurse, Al, have been working together strictly on Chordoma for over 20 years. They were at Mass. General hospital for many many years, and then came together to UCLA to start the Chordoma program less than a year ago. Let me just say that these two, Al and Dr. H, are a Chordoma-surgery-dream team. This is all they do. Not just surgery. Not just bone cancer surgery. But Chordoma surgery only. That is and has been their entire focus for the last 20+ years. So they, along with other specialists, have fine-tuned this surgical procedure to avoid any type of complications that come up. Dr. Hornicek (let's call him Dr. H) mentioned performing at least 300 of these surgeries, and he has performed more than any other surgeon in the U.S.! Worldwide, only doctors in China (because of their population) have performed more of these surgeries. So, not only am I in expert hands, I am in the hands of a foremost internationally recognized Chordoma expert. People fly from all over the world to see him, and I just had to drive for two hours. That is amazing!

During the visit, which lasted 2.5 hours, Al and Dr. H went over the details of my surgery, which is quite extensive. It's actually going to be two surgeries. This is the gist of what I gathered from my visit. Some of the tiny details may be a little off, but it was hard to write everything down.

• The surgery consists of a team of Dr. H (orthopedic surgeon), a general surgeon, a spine surgeon, and a plastic surgeon
• First incision in the front to tie up the blood vessels (to avoid blood transfusion and massive blood loss) and start cutting/preparing the sacrum from the back. They will also remove muscle from my abdomen to fill the void of taking out the sacrum (something of that sort) This surgery will last 4-6 hours. 
• 3-5 days later (after the wound in the front heals), they will flip me over and do the second, more extensive surgery in the back. They will remove most of my tumor and anything that is involved including most of my sacrum, any nerve roots that are involved, and leave whatever they can. They need to be sure to remove the entire tumor with wide margins, taking with it whatever's necessary. I asked Dr. H if he could save my S2 nerves. He gave a roundabout answer that mostly seemed to mean "most likely". On whether he could save the S3 nerves, he mostly said no. He reiterated his main objective is to save my life. I then told him that I didn't care about that, I just wanted him to save the nerve roots haha. Everyone laughed. Mostly he was saying that you cannot always depend on the MRI. He'll have to wait until he's in surgery to truly see what he can save. The surgery also involves a bone graft, and hardware that screws into my pelvis, to avoid sacral insufficiency fractures in the future. There's a lot of other mechanical things that they mentioned that I don't understand very well yet. Like why do they need to take muscle from my front and for what? And while plastic surgery is there, can he take out some fat and give my a tummy tuck as well while he's at it?? Lol. This surgery will last 8-10 hours. 
• I will be in the hospital for an estimated two weeks, and another two weeks after that in a rehab center. 
• The most surprising thing to me: I will need to get cleared to sit, and I will not want to sit for 3-6 months following the surgery. I will be able to sit on a toilet they said, but sitting will be painful for me for a while. Basically, Dr. H says, I will feel like a grenade went off down there. Yikes! 
• Another surprise: I will most likely be using a walker for 3 months or so after the surgery. 
• Most patients need their narcotic pain meds for about 6 months following surgery. 
• One of the scariest things about this type of cancer is its high re-occurance rate. The best chance of beating this cancer is to get ALL of the tumor surgically, not leaving even one cell behind to wreak havoc. But Dr. H has a 0% re-occurance rate!! That was incredible to hear. That as long as there are no metastases (in the lymph nodes or lungs) prior to surgery, according to those statistics, I have a 100% chance of being cured, one-and-done. 
• As far as activity level goes, Dr. H says he normally tells patients that they will only be limited in high impact activities. But he recently changed his mind with one patient who after a year was doing high intensity workouts in the gym and sent him videos of his workouts. He also mentioned a Marine who after six months was able to go back into active service. I also spoke online with another guy who had this surgery and told me that he did Crossfit 4-5 times a week. (Wow!) I have hope. Not that I'm into Cross-fit, but just knowing of these cases helps me feel like this surgery will not be the end-all of my athletic interests. 
• My overall thoughts on the experience. 
• I am SO happy to be in good hands. I know that if there is a nerve root that can be saved, he's the guy to do it. If he can't, I won't question it. If I need to have hardware, it's because they have tried it without, and it works better this way to avoid future surgeries and painful fractures, etc. 
• Recovery: It's going to be tough! (Not wanting to sit for 3-6 months? A walker for 3 months?) But I'll get through it. I have my family and my support team who will get me there. 
• I'm sooooo glad I didn't go with the Kaiser Dr. (more on that below) 
• Kaiser Doc vs. UCLA Specialist: 
• Kaiser doc was nice, had great bed-side manner and has a great reputation as a spine surgeon. He had done a few Chordoma surgeries (I'm guessing 5 in a 30 year career-span). 
• Kaiser doc's approach to my surgery: Go in through the back only. Take out the tumor and whatever was necessary. Sow me up. It's easy! It would be him and another spine surgeon. He told me in the pre-op that I would be surfing in a month!! There was no hardware, no bone-grafting..It was so simple, yet when he said "surfing in a month", it felt...so NOT right. 
• I was so close to going with this doctor because he denied my initial referral to be seen by a specialist. I'm glad that he granted my request in the end because otherwise, he would have performed the surgery and I would have had no idea of what was to come in terms of recovery, and I probably would have had to have multiple surgeries after that and it could basically mean the difference between having a re-occurance or not. In other words, the referral to see the specialist probably saved my life. I will probably never know, but my gut knew that this was not the right guy for the job. 

Anyway peeps, the bottom line is: I'm in expert hands and I'm happy about that. It's going to be a long and hard recovery, but I'll do my best. Everything feels RIGHT with Dr. H. There are no doubts. I have full confidence in this guy, and I'm so blessed that he's close, and I have all your support. Because of that, I'm not worried! Like I've said from the get-go, "Everything is gonna be OK, no matter what". 

What is this?

Hello Friends/Family,

I've created this page as a way to give updates and to write about what's going on. I suspect the purpose is two-fold. One, to keep friends and family in the loop. And two, writing is cathartic and a release for me in a way.

I'm not sure how often I will publish updates, but I will try to do it often.

Thanks for being a part of my journey.

Crystal