The Big Beginning

Jambo! Welcome, whether it's for updates, inspiration, story time, or you simply just can't look away from this trainwreck--I'm happy you're here!

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I have been battling Clear Cell Sarcoma since 2016. I have gone through so many different phases, but after keeping quiet for so long, I want to share my story to help even just one person. I wrote a piece in early 2018 after I had cancer for 2 years BUT I was in remission when writing it. I feel inclined to share as it has a lot of details and questions answered that most people don't know. I will continue to update and write, but I felt this might be a good way to start. Enjoy!

Chapter 1

Right around the time I graduated college, my low back and left leg started to hurt every now and then. As weeks went on, the pain got worse. To this day, I still don’t know how to explain the pain, and when you try to explain deep-rooted pain no one ever knows what the hell you’re trying to say. So I just started running more, lifting more, stretching more. I was determined to get rid of the pain naturally. It continued to get worse and not only did my back and leg hurt, but I started getting excruciating headaches.

Until one day in July, I got home from my internship, got in the shower and just started bawling. I knew something was so wrong with my body, but I didn’t know what to do. While in that same shower, I bent over to reach for the shampoo when my back completely froze up and I lost my vision. I basically had to roll myself out of the shower and into my room where I called my dad crying, “DAD! It’s my back. I can’t move. I can’t see. I’m in so much pain. Can I call 911?” He told me to call my boyfriend, who was at work, but he jumped in the car and came to take my to the hospital no questions asked. When we got to the ER at the University of Utah, he tried to explain my symptoms because I couldn’t talk or even see straight. I started seizing and dry heaving on the floor of the ER and still to this day, I get irrationally pissed off when I think of how the guy at the front desk of the ER came over to me and told me to “calm down.” As if I could help it.

Anyway, when I finally saw a doctor, she diagnosed me with a bulged disc in my back. They gave me some pain pills and wished me luck. When I tried taking the pain pills, I threw them up immediately. I couldn’t keep any food down either. Another 24 hours of this and this time my best friend took me to the ER again (a different one) where they hooked me up to an IV. I will forever be grateful for my best friend and boyfriend at the time, they really did save my life. I regained my vision and was starting to feel a lot better (shout out to drugs) when they told me I had a bladder infection and gave me an antibiotic. I remember driving home already knowing the ER was so wrong. After so many trips to the ER and the drugs wearing off, I was basically losing hope. I didn’t know what I was supposed to do and with all of my family in California, I felt pretty alone. My boyfriend was getting sick from watching me in that condition so he shoved me in the car and drove me to a chiropractor even though I was incredibly reluctant. Chiropractors aren’t technically doctors and I always thought they were full of shit. Turns out, that chiropractor I saw was the only one with enough sense to order me and MRI, where they found a large tumor in my lumbar spine. I couldn’t believe it. I remember laying on the floor in the room after I got my MRI waiting to see if there was anything, and of course I was crying and scared out of my mind, but I was more relieved than anything. “Great! Let’s remove the damn thing! Cut me open, rip it out, let me move on and start healing!” I kept telling myself. I hadn’t eaten anything in days, I was still puking out bile, which made my back and head hurt even worse. They removed the tumor a few hours later and I was so happy. The surgery was more painful than I expected, but my mom flew out and was there to help me with everything, my boyfriend and best friend traded off sleeping on the terrible excuse of a cot in the hospital room, and I was stoked to be chillin’ with my favorite people day in and day out until I got out of the hospital.

My mom stayed for a few more days until she thought I was well enough to take care of myself and then she left. No less than a couple hours after she flew out, I got a call from my surgeon’s office saying he wanted to see me. I never really believed in “feelings” until this moment. I knew it wasn’t good. I called my mom wailing and she sent my step dad, who was still working in Utah occasionally to come to my house and pray for me. I wasn’t really sure at this point if I believed in God, but I needed something to believe in. So I trusted that everything was going to be okay. I guess my mom thought differently because she hopped back on a plane to Utah and went with me and my boyfriend to meet with my surgeon. It was then that I found out this battle wasn’t over. Melanoma??? What the hell, honestly. I have always loved the sun and spent a lot of time in it, but how could it metastasize to my spine??? I was so upset, but knew I could handle it.

“Everything happens for a reason,” and “You’re not handed anything you can’t handle,” basically became my life mantras. I started immunotherapy treatment, basically chemotherapy except without any crazy side effects, and was supposed to do that every three weeks for year and then I would be in remission and life would keep going. I felt pretty good about it. I would get CT scans and MRIs every twelve weeks to make sure it hadn’t spread. I made it nine months and had already started planning my remission party. I was going to throw a fat rager. They also had this gong at the hospital where whenever someone finished their last treatment, they got to hit it and it would make this loud noise and everyone would cheer for them. I would literally daydream about me hitting the gong every damn day. I was so excited for July of 2017 because that’s when all of this was going to happen.

My back had recovered and I finally got a job in marketing in February of 2017. I was so proud of myself. I had an extremely invasive surgery, extensive rehab, diagnosed with cancer, and undergoing treatment and was able to move on so quickly. I was a boss ass bitch. Excuse my language mom.

Until May of 2017, I was sitting at work and I got a call so I stepped out to answer it. Pretty much my nightmare came true and I had another tumor. I don’t know how to explain the feeling, but finding out you have one tumor is heartbreaking. Finding out that you have been doing treatment and were doing great for nine months and the cancer was back, is more of a confusing pain. WHY?! Was the only thing in my head. I gathered my items and left the office and didn’t return for a few days. My oncologist switched me to another immunotherapy that was supposed to be stronger. My mom flew in and we decided to go to other hospitals that specialized in Melanoma so we flew to MD Anderson in Houston, TX. MD Anderson didn’t have anything else to offer me, except for the fact that they did more testing on my tumor and found out that this whole time I DID NOT EVEN HAVE MELANOMA. Clear cell sarcoma.

Chapter 2

So now I’m angry. “How do you misdiagnose someone and treat them for the wrong cancer for nine months?” I asked my oncologist. “Melanoma is really similar to sarcoma, it’s hard for pathologists to tell the difference sometimes.” And went on with more scientific bullshit that I didn’t have time to listen to. It was time to get me on the right treatment. I needed to get better and move on with my life. The problem, though, was that there wasn’t a good option to treat sarcoma. My oncologist wanted to keep going with the stronger immunotherapy because he thought it “could work.”

As my health was falling apart, the rest of my life was too. Things started to get a little rough with my boyfriend. I think we were both stressed about my health, and he just wanted to live his life as a young adult. He was 23, so can I really blame him for wanting a normal life? I wanted a normal life, too. But things were pretty serious so I didn't see either of us going anywhere.

August rolls around and it was time for me to get another MRI. I was tired at this point. It had been a year and I wasn’t really ready to hear that my cancer had gotten worse, so I decided that it was going to be better with this scan and there wasn’t any other option. I was positive that there were improvements and I was on the mend. It made the three hour MRI a lot easier and I had some sort of peace going into this one.

Sorry to get your hopes up, but I had another two new tumors. I was at Jiffy Lube this time when I found out. I’m pretty sure I got overcharged by like $300 because I just sobbed to the service guy and told him to charge me for whatever he wanted but I needed my car back so I could go home. Sadly, I was kind of used to hearing this news. I took an hour to cry and call my parents, and then I threw on a pound of makeup to cover my baggy eyes and went out to celebrate my boyfriend’s birthday, which was in a couple days, with his parents. Girlfriend of the….century? I think yes.

He didn't deal well with hearing my cancer was back, again, and in full force, so we both decided it was best to end the relationship. Also didn't help he had another girl in his back pocket while I was going through treatment, but that's a story for another day.

To say I was devastated would be such an understatement. I never saw it coming and honestly neither did anyone else. I went through all the stages of grief and luckily I am now very grateful for the way things turned out there, but it still didn't make it any easier. And that leads to my dating life during cancer but that will most definitely be its own post haha.

Chapter 3

I packed my boxes and moved back to California the next week and I immediately felt better. I was living with my mom and close to my extended family. It wasn’t my proudest moment—quitting my job and moving in with my mom at age 23—but I knew it needed to happen and I wanted to be by my family. I was going on a new Bumble date almost every other night and having a lot of fun meeting other guys until I learned they're all the same haha...

I started seeing an oncologist at UCLA and started to have some pain. However, MD Anderson called and said they might have a trial for me, but that I couldn’t radiate any of my tumors or I wouldn’t be qualified for trial. I decided to remain in pain until I could get to Houston. Turns out they gave away my spot in the trial the day before I got to Houston so I decided to write MD Anderson off completely. I went back to UCLA to start the process of radiation and they wanted me to get another MRI so they could get the exact measurements of where they needed to radiate.

I was sitting at home when I got an email with the MRI results. I expected there would be tumors so that wasn’t a surprise, but I got to reading and found out I not only had multiple new tumors, but I was diagnosed with leptomeningeal carcinomatosis. Obviously, I had to Google what that was. I still think it’s funny that I have all these health issues. It’s like cancer handpicked the person who knew the least about the scientific body.

Anyway, I Wikapedia’d whatever the hell that long ass term was and here is exactly what I read: “Leptomeningeal carcinomatosis (LC) is a rare complication of cancer in which the disease spreads to the membranes (meninges) surrounding the brain and spinal cord. LC occurs in approximately 5% of people with cancer and is usually terminal.”

Alright. So that’s not good. My oncologist was conveniently out of the country for a month at the time so I had to speak with the on call doctor who basically told me to get to the hospital ASAP. I drove up to my dad’s house in LA and got to the hospital the next morning where I was desperately looking for answers about LC. One doctor told me, “It’s not a good prognosis. You can expect three to six months to live.”

I spent the next two weeks going to the hospital every day for radiation alone. I was in so much pain that I could hardly walk, I couldn’t sleep, and I was pretty much miserable. I was in more physical and emotional pain than I’d ever been in, and on top of that, I was thinking I was about to die.

The radiation finally kicked in and I got relief from pain. I hadn’t started any chemotherapy because the last immunotherapy the oncologist gave me in Utah put my liver in serious risk so my current oncologist wasn’t ready to put me on a new medication—especially since the one he wanted to put me on was also known to effect the liver. I spent two months on steroids to try to normalize my liver and weighed nearly 200 pounds.

If you can’t tell by now, there is constantly something new happening. I know cancer isn’t easy for anyone, but I seriously felt like I was on a roller coaster with some loose screws and was just waiting for it to collapse.

I would like to think throughout all of this, I had a pretty positive outlook given the circumstances. I wasn’t easy to live with and I definitely blocked most people out from my life because it was just easier for me that way. Although I will say, a lot of the people I thought I was really close to drifted away from me. I can’t blame them, because this isn’t an easy situation for anyone, but it definitely taught me a lot about people. I also had people I didn’t think I was that close to really show up for me. One group of friends booked a spontaneous trip to Cabo for me when they found out the news. Friends who surround you with love are people you want to stick around for. I will tell you that for those 4 days in Cabo I hardly spent any time thinking about my health and it was the first time I felt happiness in a long time. And that is something I will forever be grateful for. I felt human again.

Thanksgiving came and I spent the majority of it in bed, in pain. Right around then, my liver renormalized and I started a new chemotherapy pill. I was due for another MRI in December. I was still in a crazy amount of pain so I wasn’t expecting good news, but was hoping for better news. I had a plethora of people praying for me, but a small amount reaching out to me. I never faulted a single person for it though, because I understand how awkward it can be for people—not knowing what to say to someone because you don’t want to say the wrong thing, you don’t want to be pushy, etc. I get it.

There isn’t really a way to describe the feeling of waiting to go get a scan that can determine how much longer you have to live. As much as I tried shoving it to the back of mind, which by the way I have gotten really good at, I would get this constant pit in my stomach every day when I thought about it. I finally made it to scan day, and then the worst agony occurs which is waiting for the results. As a patient, I (and my family) am not getting a wink of sleep in anticipation for the results, yet I waited a few days and when I hadn’t heard anything back, I emailed my doctor asking if he had the results in which he replied: “The MRI of your spine showed no signs of cancer. This is great news.”