Nicole Carter vs. Chordoma
$32,820 of $60,000 goal
One in a million. I’ve heard that saying, but quite frankly, I had never given it much thought, until I became that one. My name is Nicole, I’m 26 years old and this is how I became “one in a million”.
I was diagnosed on in April of 2012 with a sacral Chordoma, an aggressive bone cancer, which affects literally one in a million people, with only 300 new cases reported annually. My diagnosis was a long process that included three biopsies and half a dozen scans before doctors in Seattle could diagnose me with the help of specialists in Boston, Massachusetts. At the time Seattle wasn’t properly equipped to handle my situation so they recommend I fly 3,000 miles away to seek the best treatment possible.
Due to the size and location of the tumor it was required that I have 28 of rounds of proton radiation therapy and a sacral resection that would remove 90% of my tailbone. I ended up having my sacral 3-5 vertebrae and my coccyx removed before I had an additional 11 of rounds of proton radiation therapy.
But you know what, all of that was okay. It was okay that I spent over 3 years in physical therapy. It was okay that I would have to be on nerve pain medication for the rest of my life. And it was okay that I would never again be able to urinate without the use of durable medical equipment that I’d have to pay hundreds of dollars a month for, for the rest of my life. It was all okay because the tumor was gone and it looked really probable that we’d have a very low recurrence rate.
But sometimes things happen. Sometimes you can have the best doctors and get the best care, and bad things can still happen to really good people. Almost 4 years after my first diagnosis, on March 10th, 2016, I received the call. “It looks like regrowth.”
Those are some of the worst words that a cancer survivor can ever hear. It instantly creates a pit in your stomach and your mind begins to race with a million thoughts. My first and most important questions was spoken with determination and hope, “How do we beat this?” All I could think of was, “what’s next?” I’m the type of person who all they can do when they get knocked down is get back up again. No matter what, I’m determined as hell and will fight to the end with the greatest amount of positivity you’ll ever see.
To be honest, things don’t look very well overall. There’s talk of probable recurrence for the rest of my life; the doctors are also worried I could be genetically predisposed to get tumors; who knows, they’ve also thrown in the chance that this tumor is due to all of the proton radiation I had before, which immediately eliminated our option of doing more radiation this time around. And then there’s surgery…surgery at this stage would result in me losing half of my pelvis and my left leg. So that’s daunting, to say the least. But you know what, I do have one option, and that’s all I need.
Some of the best doctors all got together and they decided that systemic therapy might be the best option. It would help target the tumor I presently have plus it would wipe out any cell that might be out there on its way to my lungs, because that’s where Chordoma cells just love to multiply.
All you need is hope, and I found that although our option is only limited to one, one is better than none. Despite the low likelihood of chemotherapy yielding positive results we moved forward with that decision and we couldn’t be happier. On June 28th I will be starting my 4th round of chemotherapy and we found out a couple of weeks ago that my tumor is already SMALLER! That’s’ right, folks, the tumor is already cowering in fear and retreating. Hopefully it won’t take us much longer to get rid of the darn thing.
In the meantime, I am still unable to work, as I focus all my time and energy on treatment and rebuilding my immune system each time I finish a round and am discharged from the hospital. Unfortunately, I have been physically and mentally unable to work since April 19th and it as it doesn’t look like the tumor is shrinking quickly, it doesn’t look like I’ll be returning to work anytime in the near future. My schedule is currently consisting of five days in the hospital, one and a half weeks of feeling nauseous, crummy and having virtually no immune system and then about half a week of feeling really good and a lot more like myself just in time to go back in the hospital and repeat it all. So although I’m mentally super pumped about things and positive as all get out, I’m physically having a really rough go of things.
Although my pain is finally being managed I’m having intermittent bursts of pain and a lot of difficulty walking, and a persistent drop foot issue that picks and chooses when it wants to show itself. All of this may sound really grim, and some days it really is but the biggest fear right now is a financial one. Each month and I have to decide if I want to pay the electricity or insurance bill, and I’m usually unsure if I’ll be able to get enough money in to cover rent on time or at all really. Although I’ve received some more than generous help from some family, it’s not enough. Let’s face it, my mom depleted a ton of her savings, and I mean a ton, the last time I was sick, both caring for me and sending caregivers out to Boston so I wouldn’t be alone through treatment. We’ve (my mom) cashed out retirement accounts, sold a car, and cut down on every expense we can. We don’t have cable TV and try not to spend any extra money on anything one would consider ‘frivolous’.
Not everyone can donate, and not everyone can donate as much as I need to survive. Now don’t get me wrong, I’m the kind of person who don’t not expect a thing from anyone, nor should I. It’s no one’s responsibility to help me, but I appreciate every last penny, in every form, that I’m gifted. This is why I’m reaching out to each and every one of you, those who I’ve known for years, maybe some I barely know, and even those kind-hearted strangers I’ve never even met. I’m asking all of you for help when I can’t help myself. Whether you can donate $5 or $500 I appreciate and love you more than you will ever know. From the bottom of my heart, thank you, you are helping me by keeping the lights on, my belly full, and a roof over my head and my animals.
My goal is to raise a total of $20,000 in financial aid for my medical and personal expenses I will accumulate over the next 10 months. My ultimate goal is that I will hopefully be able to return to work; however, we are uncertain at what point I will be able be done with treatment and able to get back to a ‘normal’ life.
--- Due to the severity of the bills that are piling up and the need to purchase some medical equipment, I have increased my goal to $30,000. Thank you so much for your love and support. ---
On a silly note, I started losing my hair on the back of my head so I took some pictures of how I could go about day to day and still look fabulous. Put a cat on it, or some squid tentacles, how about a wreath of flowers or maybe you just need to become a teddy bear or a roaring lion! (LOL) This happened before Colin fabulously shaved my head, don't mind the red cheeks, I recently received some blood and am awfully rosy. ♡♡
Before getting these results we had reached out to my prior treating team at MGH in Boston, MA and they also got back to me this week. They have some information that is different from what SCCA is saying and are proposing some different treatment options/outcomes as well. After speaking with some of my family and friends we are all in agreement that it is important to consider all the treatment options before moving forward with changing our treatment plan.
At this time I have spoken with Boston as much as I am able to without actually going there and they are now requesting I visit them at the end of the month to discuss treatment options (mostly having surgery) in further detail, and potentially schedule additional testing. Colin and I will need to go to Boston to visit MGH 3 days, with 2 days of travel, one on each side, so we are looking at being gone 5 calendar days, despite being home for part of the travel days 1 and 5.
If there is any way you are able to help donate to the GoFundMe we have set up for our travels please visit www.gofundme.com/nicolevschordoma. We know you all have helped us so much already, but it is looking like things are only going to get more difficult from here and we can use all the help we can get. At this time we are unsure if we will be able to have free lodging or free airfare like we have had in the past and that will make traveling even more difficult than just needing the funds to get around while we are there. Because I'm now in a wheelchair the majority of the time both inside and outside of the apartment it will drastically change how we travel and this will mean having to check a wheelchair when flying, and possibly even renting a car as I presently lay down on my side in the back of our SUV whenever we travel anywhere so I'm unsure if I'll be able to ride on public transportation like we've done in the past.
I've also recently hit quite the struggle as now I'm on COBRA health insurance since losing my job. Unfortunately this $750/month premium insurance plan was my only option at the time because the other options through the wahealthplanfinder.org had plans that either didn't cover the hospital I receive treatment at, it didn't cover my chemotherapy, both of which are really important at this time. Although we've received a lot of help so far, there was really no way for us to know that things were only going to get worse, to a point where we would need to ask for additional financial support, until now. We very much appreciate any help you're able to provide.
There is an event being put on by the NW Sarcoma Foundation that I will be attending next Saturday, April 22, 2017 that you're all more than welcome to attend with us! It's in Seattle, WA and it is the 13th Annual Dragonslayer Walk, the dragon being the Sarcoma (the type of cancer my chordoma cancer falls under). If you'd like to join us registration is $25 and if you'd like a t-shirt (which isn't required) the cost is $20 per shirt or $40 per sweatshirt plus $5 shipping per package. I am the Team Captain for our team and we chose a name that has been used before during American Cancer Society Relay for Life events called Carter's Cancer Crusaders! You can join our team at https://nwsarcoma.org/events/dragonslayer/seattle by clicking the Join a Team button. The event goes from 8:30am-12:00pm and I will be there for the entire event and was even selected to answer a couple of questions along with some other people who have been personally impacted by sarcoma cancer.
Colin, our families and myself are all staying positive, and are trying to focus on the luck of finding it early and we ask that you all do the same. Although we need to take this very seriously there is some good that is coming out of this bad news. Thanks for your continued love and support, we couldn't do it without you!! ♡♡
It has been a really long day today. I've been having a huge spike in pain over the last week and it peaked at unbearable over the weekend. After being barely able to sit or stand for any amount of time on Sunday and Monday I called my medical team this morning to get some help. After my hearing test at UWMC, thankfully although I'm hearing a weird noise in my left ear my hearing is excellent so there's that to be thankful for, we were asked to cancel my water physical therapy and instead come to SCCA to be looked over and spoken with. After asking a bunch of questions about my pain and after even more waiting my medical oncologist, with the best bedside manner he has ever had, consoled me as he informed me I would need to go back to UWMC to be admitted for an acute pain crisis. It took hours more to get my pain undercontrol but I'm finally comfortable and have been able to eat something.
I'll probably have to be in the hospital for 2-3 days while I'm monitored but once my team feels my pain is better managed I should be able to go home.
The pain management team just left after asking me a lot of questions and they were able to already make some suggestions/adjustments to help keep my pain under control without having to take too many different things.
It sucks that this was necessary, it's certainly not how Colin and I saw the day going, but we are confident this will be worth it. At least this time I don't have to get chemo!