Growing Pains

I'm sorry I don't have good news to share with you. My tumor is not shrinking, and to be frank, I'm a little tired of being asked about it. "Has it shrunk yet?" or the simple question of "What's the latest with the tumor?" Every time I've been asked that question, I've had pretty much the same answer, and that is "no change".

I know people mean well, so I don't take it personally. I genuinely enjoy when friends reach out to see how I'm doing in general, but I've grown tired and weary of giving the same old answer or going over specifics of the latest MRI results or when my next MRI will be. Plus, as I stated in my previous posts, it takes 6 months to 2 years for the radiation to work. It does not usually start shrinking tumors immediately, at least in the case of Chordoma. These days, I'm all about hearing what's going on in other people's lives.

What I had been expecting in the latest MRI, (Dec. 30) for that reason, is that it would be the same size, "no change", although, of course, I really hope for shrinkage or deep down, total disappearance of this whole thing. Spontaneous remission. All healed. As if none of it had ever happened. I know it could happen. It's happened to others. But that's not what happened to me, at least not yet (fingers still crossed).

So what did the MRI report?

It didn't disappear. It didn't get smaller. It didn't stay the same size. It grew BIGGER.

This was the one option that I had not even glossed over in my thoughts. Before radiation treatments I was told that the worst most unlikely thing that could happen after treatment would be that it continue growing. But I was reassured that this would be an extremely rare occurrence, so I pretty much decided that it wouldn't happen to me.

So, upon seeing that it GREW in my MRI report, I was shocked, devastated and, between choking out the words to my mom that I was going to die, I was sobbing uncontrollably. Seriously, how could it have grown? I totally lost it. It never even crossed my mind that it would grow after radiation therapy.

I started to ask myself disempowering questions that only made me feel worse. Why didn't I just get surgery? Why was I so stupid? Why is this happening?

My sisters came over. We had a family reunion. It's so good to have family. I talked about the reasons why it could have grown. Was I eating the wrong things? Was it the supplements? Was it just the nature of the tumor? Was it because I stopped doing certain things? I felt so helpless. In June I went to Brazil to see a spiritual healer. In August I dropped $30,000 on an in-patient cancer clinic in Mexico. I went through 43 rounds of 77Gy doses of radiation. I spend my days and nights in meditation and prayer, along with several rounds of energy healing, coupled with a healing diet, And it's still growing.

My sister Rachel helped me realize that I shouldn't feel so stupid about choosing radiation over surgery because I could have had the surgery, then had a reoccurrence (a ~40% chance) and beat myself up over not having had radiation instead. It's hard. I'll never know what would have been the better decision.

Up until this point, I had 100% expected to get past this. I was confident this cancer experience would just be a blip on the radar that I would get through and look back on as something that helped me grow stronger. A challenge to go through just like everyone else. But this. This caused doubts to creep in. Doubts that had never been there before. Doubts about living a full life. Doubts about being able to get past this. Dark thoughts consumed me and I felt tired. Tired of fighting. Ready to give up. I told God before I went to bed that night that it would be Ok with me if I didn't wake up. I just didn't want to go through this anymore.

The next morning I spoke with a patient navigator at the Chordoma Foundation who suggested that I have my tumor sample re-tested because it's possible that I was mis-diagnosed with the type of Chordoma. There are 4 types and I was diagnosed with the conventional, slow-growing type, but since this has been more aggressive and most pathologists don't know the latest techniques on diagnosing the sub-types, she thought that perhaps I may have the more aggressive sub-type. If this is the case, it would explain a lot, but we hope that it is not the case, since this type has a much worse prognosis. She also suggested getting into contact with the UCLA surgeon and see if I'm still a candidate for surgery. So that's what I did and they said that I am a candidate for surgery, but I would be in the hospital for longer and there would be difficulty with the wound healing. They were very concerned that it was still growing and requested copies of my imaging. So I requested another test of my biopsy sample and sent off my imaging to UCLA surgeons.

That afternoon, I spoke to my radio-oncologist, the guy that treated me with the 43 rounds of radiation and had told me that it would be very, very rare for my tumor to continue growing after the radiation. However, he said that when he uploads the images on the computer, the tumor looks like it grew a tiny bit, only millimeters larger than the last one that was done six weeks prior. He said it looks "stable", like there's not enough growth to be heading for surgery. He said that the growth could be "pseudo-progression", meaning swelling or inflammation due to the treatment, not real growth. So, he suggested me getting another MRI in one month to see if that's the case.

I went into his office a few days later and he showed me the last 4-5 MRI's and it's true that there didn't seem to be much difference in the size as far as I could tell. Also, because it's an odd shape, it's hard to measure and the numbers that are reported in the written report should be taken with a grain of salt, because it simply depends on which angle they're measuring from. After seeing him and the images, I did feel better. Maybe it is pseudo-progression.

A few days later, I received an updated MRI report from Kaiser (because the previous one was compared to June, and the radiologist insisted it be compared to the latest one done in Aug. and the one done in Nov). It stated "slow, significant growth" since August. It also stated the dimensions as well for each MRI. According to the report, it seems that the tumor had been growing throughout radiation and afterwards, though slowly. But if that's the case, it also seems that I was being lied to by the radiologist who told me each week during radiation that it was the same. "No change".

So, as of now, I don't really know what's going on. It's bigger. But that could be due to pseudo-progression. Or it could be because it really is growing. Another MRI is next week which will give us  (hopefully) more information. In the meantime, I'm getting the ball rolling to possibly have the surgery, or go into clinical trials.

I'm feeling a lot better mentally. I've overcome the dark thoughts and re-centered, focusing on gratitude and what I can do. I'm so grateful for my family, my friends and the somewhat normal life that I'm still able to maintain. I'm not in as much pain as I was a few weeks ago. I'm still able to go for long walks and drive short distances. In December, I tried tapering off a medication and unfortunately this made my pain much worse, so I went back on and have been doing much better since. As long as I can walk outside in the fresh outdoors, I am more than happy. I'm enjoying the time to read, journal, meditate, meet with friends, pray and write.

I tried to return to work, but my pain flared up unexpectedly a week before classes started, sadly causing me to cancel on going back to work. A few days later, however, I started to feel better as if I were able to go back to work. But I missed the boat. Perhaps next semester. It's as if my pain is my guidance system and I wasn't meant to go back to work just yet. Trying my best to stay positive and surrender to the ups and downs. This is a real-life rollercoaster.

Thank you all for your continued thoughts, prayers, positive vibes and support. I am so grateful for everyone! Thank you for reading.

New Years Resolutions

I can tell I've changed a lot this year because when I started to think about new years resolutions, this year was much different from previous years.

My new years' resolutions for 2018 (any many previous years) involved losing ten pounds, saving money, paying off debt and getting promoted (for more money).

While the specific details are not yet nailed down, my new years' resolutions for 2019 involve:

• spending more time with loved ones
• Volunteering
• being present and more connected to my students while I'm teaching
• being in a state of love, gratitude and appreciation as much as possible throughout the day 
• Giving more (being more of a giver than a taker) 
• Finding ways to serve others 
• Stop caring what others think 

Can you see the shift? In previous years I had always made resolutions and goals that involved my own personal benefit. There is nothing wrong with wanting to lose weight or wanting a promotion, but these were all for superficial reasons like wanting to look good in a bikini and wanting a bigger salary. If you want to lose weight for health reasons, to be able to stick around longer for your kids and grandkids, that's a completely different thing. If you want to earn more money to be better able to care for your family's needs, that's different from my underlying reasons for wanting a higher salary which basically involved more shopping and surf trips for me, and me alone. 

As 2019 approaches, I realize that my resolutions involve serving and connecting with others. While I never saw my diagnosis as a death sentence, there's nothing like a life-threatening illness to make you see the bigger picture. The bigger picture. Sure, losing ten pounds and finding your jeans a little bit looser is nice, but when I die, I'm not going to care about that, nor is that going to foster genuine and meaningful happiness. A promotion or a raise is great. But what is that extra money going to buy that will really make you happier? I mean, genuine, meaningful happiness. I guess it could if you use the extra money to spend on others, towards the needy. 

One of the first things I thought about when I was diagnosed with cancer was....I'm not ready to die yet because I haven't done anything to contribute. I had this overwhelming feeling of desire to contribute to something bigger than myself. Not in some grand way necessarily, but I came here to serve those less fortunate. I also thought about the fact that my whole life had been about fun and pleasure: surfing, salsa dancing, traveling, and anything that I wanted to do. I lived a very selfish existence when I know I came here to have a more selfless existence. I wasn't being true to myself. My whole life has been about me, when my whole life really is about others. 

I hope everyone reading this has a Happy New Year! Thank you to everyone for your continued love, prayers and support. Hope you all had a great Christmas!! 

Turning 36 years Young

My beautiful and amazing older sister April arranged for me to have my first ever blow-out at a blow bar, by a 22 year-old gay guy named Haze. Now, before you get your head stuck in a gutter, for those who are unfamiliar with the term, "blow-out", it means my hair got washed and blow-dried, curled, ironed and pumped with all kinds of products, plus 2 liters of hair-spray, and who knows what else they did to make my hair look amazing.

I told Haze, my male hair-designer/ new gay BFF,  that it was my 36th birthday. And then he said....."Wow! You don't even look 26!" I could have hugged him right then and there. "Not even 26?!" I didn't correct him. When he offered me a second mimosa before he had even finished washing my hair, I decided then and there he was getting a big tip. I decided to look past the fact that my mimosa now tasted like hairspray.

Now, with red-carpet hair, and 2 hairspray flavored mimosas down, we made our way over to Eve Encinitas, my FAVORITE vegan, mostly-gluten free restaurant, and SURPRISE, SURPRISE! All my friends. My sister April surprised me by reserving a big table and inviting all my friends, many whom I hadn't seen in a while. So fun. 

This was definitely a different birthday in the sense that I had no desire to go out and party. I mostly just wanted a quiet birthday, so a nice vegan lunch with friends and a blowout with free mimosas, not to mention the far-fetched comment that I looked way too young to be 26 made for a perfect day. The day also started out with a solo hike and a solo sunset walk along the shore. 

Turning 36. Another year older. I really have no complaints about getting older. I wouldn't trade my 36 year-old self for my 26-year-old self. That was just a disaster. Yeah, life was fun and lots of parties, but no, thanks. I prefer the older, wiser, more cognizant version of myself. I still feel this way even after the hard toll that my body has undergone this year. I aged a lot this year, in a lot of different ways. At my frailest point, just a couple months ago, I felt as if my body were that of an 80 year old. For a few weeks, I even walked with a walker. But then a few weeks later, when I got my strength back, I was using the walker to sit on, riding downhill on my street, catching enough speed to feel young again.

And many people don't know this, because, it's fairly new information, but I will let you in on a secret: aging is actually somewhat reversible. Reversible? Aging? What? Yeah, you heard right. Reversible. I'm not talking Benjamin Button style, but say you smoked cigarettes for 10 years and then quit, took up an ultra-healthy diet and became a yoga instructor. The damage that you did from smoking those 10 years could possibly be reversed. There's a lot of research coming out in support of the fact that certain factors, what we put into our body, our lifestyle and even how connected we are, play a role in the aging process, and that aging could even be reversed. Wow.

I bring this up because it gives me hope that all the "aging" I've gone through this year (with all the treatments, medications and stress) could be only temporary as I work on getting my strength back and getting back to my healthy self. 

I recently read an article that discussed a recent study demonstrating that our attitudes about getting older play a role in how we age physically and mentally. The study found that participants who had a positive attitude about getting older had actually aged less than those with the same age who had a negative attitude about getting older. So instead of worrying about getting older, instead of getting botox, we should just embrace that number, detach from it. It's just a number. Cliche, I know. But, the crazy thing is that if you have a negative attitude toward aging, that is you dread turning 40, 50, 60, etc., you may be unintentionally giving yourself more gray hairs, more wrinkles and shortening your telomeres. (read more about it here) 

There are two numbers that I'm personally trying to detach from. My age and my weight. In our culture, for women, the younger and the thinner, the better. It's hard to overcome cultural brainwashing, but once you identify the cultural undertow, you can choose your own attitude toward age. I say embrace it!  

The Power of Gratitude

Less than two months ago, I found myself in severe pain, unable to walk more than a few steps, stay standing or seated for more than a few seconds, or even sit up in a car, let alone drive. I went from feeling like I went from a young, healthy 35-year-old to a crippled 90-year-old overnight.

Pain, tumor, biopsy, cancer. Thoughts of death front and center. Everything that had occupied my life was suddenly taken from me. My independence. Gone. My job. Gone. Surfing, Can’t. Happy Hour. Raincheck.

It became really easy to slip down the dark path of “why me?” “Seriously, God, why me?” as I teetered at the edge of depression, wallowing into a pit of hopelessness, wondering whether my life was even worth living…

In fact, the only real reason why I didn’t slip into a total depression was because gratitude. Gratitude was and is my saving grace. I never allowed myself to wallow in the hopeless mental space for long. I got out by focusing on what I did have to be thankful for. So I couldn’t walk, stand, sit or drive, but what could I do? What did I have? What did I still have to live for?

I can talk. I can write. I can read. I can watch the sunset from my backyard. I have a wonderful family and an amazing group of friends, all who make my life worth living. I also have goals that I want to accomplish, plans and projects to make the world a better place in some small way.

I focused daily on these things. And really zeroed in on them one at a time. Take the ability to walk, for example. I’m grateful that I have the ability to walk, and I’m sure you are too. Maybe you’ve never thought about that, but really think about it. What if you were unable to walk?

And that’s when I realized how much I had taken for granted. I never appreciated my ability to walk or run. Though I am now able to walk, I still can’t run. I would give anything to be able to run down the street right now. How great it is to have legs that get you to and fro without effort. Jay-walking is not really an option anymore. Just a few minutes ago, I slowly and with much effort climbed up the stairs to get a towel, but wished I could just run upstairs taking two at a time. I saw the news showing the annual Oceanside “Turkey Trot” and wished I could be there running alongside the runners. I was envious. I took it for granted. My body. My physical ability. My mobility. It’s all so valuable. I had never appreciated my young, healthy, strong, pain-free body.

So now, I appreciate it. Being pain-free in the moments that I am without pain. That I can take deep breaths. I really appreciate that I can walk. I appreciate that I can now stand, and sit and drive. I still have cancer, but it’s not going to stop me from having things to be grateful for and having a meaningful life. In fact, in the midst of a crisis or any hardship, being centered on gratitude is key.

I focus on the feeling gratitude for the big things like friends and family. I think about each person in my life, how happy I am to have them in my life and all that they’ve done for me, given me, taught me, etc. Sometimes, I sit and write thankyou letters to these people, not because it makes them feel better to receive it, but because it makes me feel better to be grateful.

The little things also matter. Taking a shower this evening, I was grateful for the hot water. Something I didn’t have when I lived in El Salvador. I also was thankful for the new soft towels that my mom bought for me, which I’m pretty sure are the softest towels I’ve ever touched. Also, my own bathroom. I’ve had to share a bathroom before, no big deal. But I’m pretty sure that if I’d been born in rural India, I’d be sharing a bathroom with 12 people, so I just have to be grateful for that too.

But I wasn't just grateful for the good things in my life. I was also grateful for the negative--not my diagnosis, but what my diagnosis was teaching me about life. I know that I will grow, become a better person, and develop strength from this seemingly awful circumstance. It only becomes "awful" once you label it so. Bethany Hamilton, a professional surfer who lost her arm in a shark attack, stated that she would not take anything back because the event that occurred enabled her to develop and become the person she is today, and it enabled her to reach out to others and inspire them. I just watched a viral video going around social media where a woman lost both her legs at 19 due to a serious illness and now designs prosthetic legs and footwear for snowboarding. She became the first female to win a silver medal in the special olympics for snowboarding. She too, stated that she would not take anything back about her experience if she could because it enabled her to become the fantastic person that she is today. And by "fantastic" I mean strong, resilient, courageous, and evolved. 

What also helped me through was keeping a daily gratitude journal writing down three things that happened the previous day that I’m thankful for. It might look something like this:

1.   Today my mom bought me beautiful flowers. Love them!

2.   I’m grateful that I got to see my sister’s new puppy and play with him.

3.   I’m grateful that my niece came over to visit me today. 

Some may think it sounds a little cheesy or overrated, yet we shouldn’t focus only one day a year on being grateful. If you really want to change your life for the better, or if you want to better deal with hardships, a gratitude practice should be front and center 365 days a year.

Rounding 3rd base...heading for home

Hello All,

I have only ONE more week of proton beam radiation treatments. I've completed 38 out of 43 treatments to be more specific. This is quite an exciting accomplishment since I had nearly quit twice. I have had recent scans done which show that the tumor has definitely stopped growing and is stable. Goal number one achieved. Of course, shrinkage is goal number 2, which most likely will happen post-treatment. According to other studies and people that I have talked to with the same type of cancer who also had proton therapy, it can shrink slowly over the next 2 years. So, we're of course crossing our fingers and praying for shrinkage, hoping it'll happen faster instead of slowly.

As for my physical condition, I have nothing but positives to report. I am standing all day long, no problem.  A couple days ago, for the first time in weeks, I got in the kitchen to actually bake something. Also, equally exciting, I can sit for extended periods of time. I just ate at a sit-down restaurant tonight for the first time in two months. Previously, I was only able to sit for a few minutes at a time before I'd need to lie down on my stomach to get some pain relief. I can also walk, without a walker. I still have to walk a little slower than I'm used to with a subtle limp due to the nerve damage to the S1 nerve that may or may not resolve. I'm also back to yoga. I stopped after being depressed by the decreasing number of yoga positions I could do. Now, I'm getting back into my body, happy that I stretch and twist and get into positions that no longer cause me pain. There's of course a lot that I still can't do, but I'm focusing more on what I CAN do. 

It's been this way for two weeks, and the most important fact that I almost forgot to mention: pain at bay! Well, a little pain could come up here and there from dancing a little too zealously when my song comes on, BUT there has been no pain flair-ups, which is absolutely amazing because that alone makes life worth living. Not being in pain. I will probably never take a pain-free existence for granted again. I mean, I'm still on pain medication, but it's managed. Life can go on. 

So, after six weeks of horrible pain, not going anywhere except to my proton beam radiation treatments...After six weeks of being bound to my bed, unable to stand or sit longer than a few minutes, having to ride in the car lying flat on my stomach, unable to make my own meals, unable to walk more than a few feet with a walker, suddenly everything is different. 

I no longer need to lay down in the car, I can sit up in the passenger seat like a normal person. I also had my first outings this past week. One to the beach. Another to church, and just this evening to a restaurant. A social outing. Wow. It feels so great to start getting little pieces of my life back. 

It's hard not to get ahead of myself and just want everything to be back to normal right now. But, now I'm fixated on the one thing that really is keeping me from total independence: driving. I actually tried driving this week, but I am just not able to without pain. Because my sacrum has been destroyed due to the tumor, any position in which I'm sitting that puts pressure on the sacrum causes pain. Therefore, when I do sit, I lean to the right side and put the weight on my right hip. Or, I can sit at the edge of a seat, with my knees at a 90 degree angle, putting the weight on my lower sit bones. However, driving requires me to sit back with my legs out in front of me putting pressure on the sacrum. This causes pain. And it doesn't help that I have a stick shift which causes the sciatic pain to flare up when I push in the clutch. My next idea is to try driving automatic cars to see if I can sit and drive with my weight shifted to the right slightly since I'd only have to use one leg. Then, if that still isn't comfortable, I'm thinking of a scooter or motorcycle, not because it sounds totally fun, but because of the forward sitting position. Plus, I just so happen to have my motorcycle license. I should use it. 

Another achievement is that I've started tapering off some pain medications with success. I went from being the kind of person who refused to take advil or tylenol to a person who was on 9 different types of pain medication. Yikes. Now I'm down to 6. 

I'm also thinking about other things that I want to try out soon: swimming, surfing, road trips etc. Yes, yes, one thing at a time. 

That's the latest. I'm so excited and grateful that all these positives have been happening. I hope it continues to stay that way. Thank you again for reading my blog, for your prayers and all your continued support. 

Turning the Corner

I've been told a few times "I can't imagine what you're going through", so I was inspired to write about my pain, not because I want to focus on it, nor do I want anyone to feel sorry for me. Far from it. I'm not feeling sorry for myself, so why should you? I'm writing this to give others a glimpse and to express myself. Many of you have danced with pain and may be able to resonate.

This is a glimpse of what the the past few weeks have been like.

Imagine that you limp slowly into your doctor's waiting room, with a walker. You check-in, but can't sit down because sitting down is painful. Yet, standing is also painful. The sciatic nerve pain shoots down your leg. All you want to do is lie down on the floor for some pain relief. But that would be weird, here on the cold tile floor. You search for a sofa, or seats pushed together with no arms to be able to lay across the chairs. No such luck. You sit down uncomfortably trying to lean to one side so the weight rests on your hip. You sit in pain, and hope they call your name soon, only so you can lie down again to get some relief.

If sitting, standing and walking are painful, how do you spend your day? Laying down on your stomach, as if you're at the beach tanning your bum. Yes, this is how I spend most of the day, usually with a book, my laptop, my phone or my journal. It is pretty much the only consistently comfortable position for me. And yes, I just pretend that I'm at the beach reading a magazine or journaling my thoughts away.

As driving involves sitting, for the past month or so, I haven't been able to drive. Car rides can only be comfortable when I'm laying flat on my stomach in the backseat. For the last three weeks, my life has consisted of me being either at home, or going to my radiation treatments, or other doctors appointments. With pain coming and going very inconsistently, I can't manage anything else like social events. Plus, after my radiation treatments, I am tired. I sleep and sleep and sleep. I'm also nauseous. But I've learned to chew on some ginger right after to escape it.

Imagine that at times, pain flares up, for no rhyme or reason. You took your pain meds on time. But pain insists on rearing its ugly head. You lay down. You listen to a meditation. You take deep breaths. You try to accept the pain. Surrender to the pain. Separate from the pain. You are not the pain. Go into the pain. Talk to the pain. The pain persists .......Screw it!!! Get away. Escape. Distraction. You need a distraction. Walk around the house. Even though that hurts too. Lay down on the floor. Play with the cat. Jacuzzi! Go in the jacuzzi. That will help. Except it doesn't.

20 minutes later.... still in pain. What to do....

Do you take another pain pill? Is that dangerous? You don't want to overdose. Should you go to the ER? Do you wake up the parents? It's 3am. Deep breaths. You try the guided meditation again. Deep Breaths. Deep Breaths. Deep Breaths.... the storm gently subsides into the rhythms of the breath and you manage to finally fall asleep.

Luckily, I'm no longer dealing with this kind of pain. I've turned a corner.

That was the last three weeks.  I'm hesitant to jinx it, but... for the past week, I've been standing without pain, making my own breakfasts. I've been able to take short walks. I've been able to sit in chairs, actually able to enjoy dinner at the dinner table with my family. I have not had any pain flair ups. I can sit up regularly for most car rides instead of having to lay down in the back. I hope the trend continues.

This is a big difference from where I was two weeks ago, when I tried quitting my radiation treatments for a second time, writing a long email to my radiologist thanking him for all his time and support. It was a Friday, I hadn't gone in on Thursday and I couldn't make it again. I was in too much pain to make it from my bedroom to the car.

Later that evening, my oncologist called and said that she doesn't want me to quit, that she'll do everything she can, even hospitalizing me if that's what it takes for me to continue with treatment. She said they can get me a fentanyl patch, a higher dose of morphine. Whatever it takes. Because this is your best chance at a cure. Then, my naturopath doctor called and said I needed to get in to do high dose Vitamin C treatments to help with the pain. She also wanted me to continue with treatments.

After taking the weekend to think about it, I decided to stay the course with the treatments as long as my pain was being adequately managed. It's gotten easier, and I hope it stays that way. Everyone at the proton beam cancer center noticed how quickly I went downhill, and now they've seen me come back up again, commenting on how much better I'm looking.

From the outside looking in, things probably look really bad. Yet from the inside, I can tell you that it's really not so bad. Unless you catch me in the middle of a pain flare-up where I have one foot out the door ready to head to the ER for some relief. I have a different take on life at that point. However, even in the thick of the storm, I remember that we all face difficult times. One and three women and one in two men will be diagnosed with cancer in their lifetimes in the U.S., for example. I am not the only one going through a challenge. We all face difficulties, and there are many people that have gone through much, much worse.

I was recently reminded of Viktor Frankyl, and his classic account "Man's Search for Meaning", where he writes about what he learned after surviving Nazi Germany's concentration camps. This book changed my life and how I perceived the world. His premise is that we have a choice to react to our circumstances. It's our decision. The guards could take away his food, his clothes, his family, but they couldn't take away the one freedom he had left: the freedom to choose how to respond to any given situation. He could choose to smile, or he could choose to cry. Putting this into practice, I've decided to really enJOY what there is to enjoy about going through this challenge.

Despite the hardships, I've decided to enjoy the fact that I get to see my parents and my little sister every day. I'm enjoying that I'm growing closer to my family. I'm enjoying being taken care of. I'm enjoying that every day feels like a Saturday and I can sleep in, and read, and journal, and blog, and meditate, and visualize, and just hang out in the backyard and listen to the birds! I'm enjoying the visits from family members and friends. I'm enjoying the fact that my aunt just drove across town to bring me vegetable soup and muffins, and visit with me. I'm enjoying all the love that is being showered my way in the form of kind words, money, gifts, prayers, even via strangers or people that I don't know very well. I'm enjoying waking up to the sounds of birds singing. I'm enjoying having a hot, healthy dinner cooked for me every night. I have a personal chef. I no longer need to go grocery shopping. I'm enjoying the beautiful weather. I'm enjoying having a washer and dryer in the house again. I'm enjoying having a financial cushion. The fact that I have such amazing parents with the resources to help me with bills is lucky. I'm enjoying seeing my niece and nephews more often. Just yesterday, I enjoyed a warm hug from my 15-year-old-nephew as he said "I love you" for the first time ever despite his awkward teenage ways. There are so many little things. So many little things to enjoy. It's not as if I'd choose to be in this situation, but I can choose to enjoy the healing process, the journey towards health.

Another book that changed my life, or my outlook on life is "Mindset" by Carol Dewek, which discusses the need to have a "growth mindset" in order to be successful. Having a growth mindset is seeing every problem, difficult task or unfortunate circumstance as a challenge and opportunity for growth. So, I'm choosing to also see this, my diagnosis, as a challenge, and opportunity for growth. There's not doubt I'm growing. I'm becoming more compassionate, more courageous, and definitely stronger.

One more book that has changed my life and also defines my outlook on life right now is Deepak Chopra's "The Seven Laws of Spirituality". Here I learned about "The Law of Detachment" and to embrace uncertainty. Deepak teaches to almost delight in the uncertainty. We are not in control and should not try to force or attach ourselves to certain outcomes. So I embrace the uncertainty of not knowing the future. I don't know if I'll ever walk normally again (radiation has damaged the S1 nerve, so I walk with a little limp). I don't know if the radiation will shrink my tumor. I don't know if I'll ever be able to drive again, surf again, work again, have a normal life again. I have every intention to. But I embrace the uncertainty. I'm not sure what's in store. I trust in God that this is happening for a reason, for some greater benefit.

Some may see me as a poor, sick, sad person who's incapacitated and therefore, cannot enjoy life. I prefer to see myself as a warrior, using strength, courage and optimism to gracefully dismount from a messy situation. Of course, the reality lies somewhere in the middle. The point is I try my best. At the end of the day, that's all any of us can do. We can try our best to enjoy the little things, to see difficulties as an opportunity for growth, and to embrace the unknown.

Thank you for your continued support, prayers and love.

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.