Chordoma Reoccurence was the best thing that ever happened to me!

corysmithsmail

"Happy Monday" everyone! lol So while I'm not exactly new to myfitnesspal, I am new to posting. Just wanted to share my story with everyone.

So being the all around lucky person I am, I was born with a super slow growing bone tumor called Chordoma. It's really rare and most doctors have no clue what it is, how to treat it, etc. Basically a switch in your brain never shuts off telling your body to stop producing these cells, and they just keep growing and growing and growing. Something to do with why we don't have tails anymore because in this "switch" is turned off in most people. I don't know, it's complicated. lol But anyway, I was fine, no big deal and never noticed anything until I was 18. I came home from school early because I was having trouble breathing. It felt like someone was sitting on my chest. I was still going to try and go to work anyway, because I'm insane like that and told myself I would just try to take smaller breaths. (Really insane, because I was a bagger and I kind of needed to breath with all the walking and stuff) But then I finally decided to go to the ER with my mom. Strangely enough this doctor did an xray and saw a mass on my lung/spine and just knew what it was. Super strange because months later we tried to call the hospital and ask to speak with him but they had no record of him ever working there. So I ended up having to go to a specialty hospital and having 3 surgeries to get the tumor removed. Ended up missing my HS graduation...but I came back just in time for college that fall

Fast forward 8 years later. I had been getting all the recommended check ups. Following up with the doctor every 3 months, every 6 months, every year, every other year. then bam. The year that I was supposed to go back and follow up again, was the year that it came back. How ironic. So that was 2016 and my weight had been at 235lbs. The biggest I had ever been. The doctors felt I couldn't have another surgery to get this reoccurring tumor removed because of all the hardware I had in my back from the first surgery and it was too complicated to be safe. So I was put on chemotherapy pills and a dexamethasone. Those two combined, primarily the steroid, made me balloon to 264lbs in a short period of time. My feet were the size of boats, my neck disappeared, I had moon face, I still couldn't breath. And the tumor still wasn't shrinking from the chemotherapy pills. So I went to a different specialty hospital (Mayo Clinic) for a 2nd opinion. Thank God I did, because I met with a Cardiothoracic Surgeon who was super confident that he could do the surgery. But here's the kicker...he wouldn't do the surgery unless I lost 40lbs because at that weight, surgery was a huge risk.

So that was a great motivator because I kind of like breathing, and I wanted/needed this surgery more than anything. He sent me to a bariatric doctor and I spoke with the dr and a registered dietician about how to lose the weight quickly. They told me about limiting my caloric intake and what kind of foods to eat. They wanted me to buy this liquid meal replacement that they offer (of course everyone wants to make a profit). But I knew I could do this on my own, eating healthy and doing a regular meal replacement with a protein shake. And I'm a huge self-proclaimed cheapskate, if there's a cheaper solution I will always find it!

So I drank protein shakes every morning for breakfast, had protein bars and fruit or yogurt for lunch, a sensible dinner and lots of water/tea the rest of the day. The weight just fell off. I lost like 20lbs a month and the doctor was surprised that I did it without using their meal plan. After I got the surgery, I was at 208lbs. This was the lowest I've been since probably grad school. I did exercise and diet in undergrad and got to 185 but I stopped and gained it right back.

But after the surgery, I had to go for radiation therapy because the surgeon could only remove 95% of the tumor safely and the radiation was needed to "kill" the cells so they wouldn't grow back. And that was fine and all, but I had proton therapy done for my radiation and they have to make a body mold that you lay in every time you have a session. And you are absolutely forbidden to lose or gain weight. They are super strict because even if you gain 3lbs or lose 3lbs they would have to start all over on treatment. And I was trying to be done with treatment in time to start a new job, so I needed everything to stay perfectly on track.

At this point, I was extremely motivated and anxious to continue losing weight so this was frustrating to me. But It was kind of fun at points, because sometimes I lost weight on accident and I would get to eat whatever I wanted. Guilt free. lol.

Therapy ended in April 2018 and I was free to go back to my weight loss journey. But I added exercise and stopped focusing on dieting and started making better choices and focusing on a healthy lifestyle. But if it wasn't for that tumor reoccurrence, I never would have gotten to this point where I am now or at least not for a long time. I have lost a total of 70lbs and am 195lbs right now. I'm shooting for 185lbs and see what that looks like. I know that still sounds like a lot of weight. But even though I'm 5'5ft, for some reason, I don't look as heavy as I actually am. And if I got down lower, I feel as though I would look too skinny. So I plan on re-evaluating my goals at 185.

So that's my story! Didn't think it was going to be so long! lol