It was July 3rd of 2009… I went to a Croatian girlfriend’s Fourth of July party. I couldn’t be out too late or drink much because I was running a half marathon at Sauvie’s Island the next day. My friend Marijana, the Croatian (because where she is from is important, right?) was telling me that she had tumors in her neck back in Croatia that she had to have removed. I was intrigued and asked her how in the hell she ever knew she had tumors in her neck and she told me that she could feel them. So I took my hands and moved them from my jaw line down along both sides of my neck and throat and I felt this HUGE lump. I asked my friend to feel it… and in her thick accent she said, “Oh my god, Jolene. You must go to the doctor!!!”
The next day I ran my half marathon with my friend Stacy, an Anesthesiologist at OHSU. She told me to see someone right away. A couple of days later I went in to see a general physician at Providence that my grandmother, mother, father and I had seen in the past. He felt my neck and agreed that there was definitely something large there. He called it a nodule. I had blood tests done, ultra sounds and a fine needle assessment, also known as a biopsy. Some time later the doctor came back and told me that the biopsy came back “inconclusive” from the lab. He had no explanation as to why that was the case, except for that they might have handled my labs incorrectly. I asked him to have them redo them for me at no cost and he told me that that would just open a whole nother can of worms. Okay, great. The doctor was a jackass. I felt fine, had no side effects and moved on with my life.
Nine months later I was in Puerto Vallarta vacationing with a friend. About half way through the vacation I started getting a really bad strain down the side of my neck and into my shoulder. I wondered if It was due to the large purse I had been carrying around, but also knew that I should probably get back to the doctor.
I Return from vacation and go to the “Jackass” doctor’s Office. I walk in and tell them that I would like to pull all of my charts/medical records and am going to be treated elsewhere. The assistant leaves and comes back and tells me that the doctor wants to talk to me in his office. Great. I spend close to an hour back there talking to him. He feels my neck and yes, it’s still there… go figure. I tell him that I am uncomfortable with what he had not done for me when I had seen him last and that I needed to go see someone who was going to take care of me and my health. He admits that his office dropped the ball in not following up with me and I also bring up the fact that he claims that they did my labs incorrectly. He is stuttering like a mo’fo’ (I am also recording our conversation without him knowing). I record our conversation because I realized when I am talking to medical personnel, I don’t always retain what they tell me. I also have two sisters that are nurses, so it is helpful to relay everything to them. In the end of our conversation… NEARLY one year after first being seen, he says he wants to refer me to an Endocrinologist. Fine.
I move to another part in the Providence system. I have a new doctor who tells me that 95% of the time, people have these nodules and they are nothing. And since all of my blood tests were normal, I could go another five or ten years and see if it grows. My running friend, Dr. Stacy and many others are now pretty concerned. I get a referral to see a really amazing doctor up at OHSU, all because of Stacy. Once I see Dr. Gross, he tells me that we should probably take out the tumor (oh, the tumor’s name is/was Gloria. I have never named any body part, car or anything in my life before this, btw). This is August and I decided I could wait another month and a half until my sister’s wedding is over to have it removed. There was no way I was gonna have a big slit in my throat as her maid of honor! It was a good thing I waited until after the wedding!
On October 6th of last year, I get in the driver’s seat and take my mom and sister, Janelle with me to OHSU to have Gloria removed along with a partial thyroidectomy. The thyroid can fully function with only half remaining. My tumor was encapsulated, but connected to the right side of my thyroid. I’m laying in a bed and there are people coming in and asking me questions left and right. Taking blood, giving me IV’s. One guy asked me if I had any implants or prosthetics of any sort and I grabbed my boobs and said, “THESE ARE FO’ REAL”. He was so freaking embarrassed. Before I got all drugged up, I asked the doctor if it would be possible for me to see Gloria once she was removed. He thought it was an odd request and told me that it wouldn’t really be possible due to the fact that I would be out. I told him that it would only be fair for me to see it since she was mine and I was the creator and she had a freaking name. He agreed to get me a photo. And soon enough, after the surgery I had an email in my inbox from the doctor with a picture he had taken of the tumor next to a ruler from his cell phone! It was the size of a lemon. Bigger than most. You better believe I posted that shit on facebook! What a nut, huh?
The doctor came in and told my family that the tumor looked good. Meaning, he was pretty sure it wasn’t cancer, yet they needed to send it off to be biopsied. I was supposed to get the results within so many days and that didn’t happen. I was at the beach house and trying to recover. He called me and told me that the doctor that needed to review my biopsy was not available and it would be a few more days. I found this strange, but didn’t think much of it. Days later, I was sitting at home around the kitchen island when I got the call from Doctor Gross. ”Hi Jolene, Dr. Gross here. I’m calling to let you know that you have Follicular Papillary Thyroid Cancer.” My heart skipped a beat. I said, “Okaaaay, now what?” He proceeded to tell me that they would have to schedule another appointment one month later to take out the rest of my thyroid. Six weeks after that I would have to have Radioactive Iodine Treatment. Hearing all of that made me teary eyed and scared. He told me that for two weeks before the treatment, I would need to eliminate all iodine from my body and from my diet. That was shitty.
I went in for my second surgery in the beginning of November to take out the other half of my thyroid. So weird how you can be so drugged up and a big group of people get all inside your body and take out something that is so crucial to your everyday life. Surgery went fine, but I needed to stay overnight to make sure that all of my levels were where they needed to be. I was supposed to be in the “penthouse” of rooms, but for some reason that didn’t work out. I ended up in a big room with a bunch of curtains for walls. I was drugged up and delirious and found the app, FATBOOTH. If you were friends with me at that time, it is more than likely that I laughed and cried over a photo that I created of you that evening in that hospital. Jessica came to visit and we laughed so hard. Ryan D. McCoy had brought me the most amazing boquet of flowers, cookies with sea salt that were to die for and some magazines. Life wasn’t all too bad.
After this surgery I went back to the beach with my mom and dad. For being an active person, all of this being cooped up and healing time was taking a toll on me and I needed to get out of the house. A trek down to the beach from my parent’s house is a good 15 minute walk, so I decided to get in my mom’s car and drive 2 miles to my sister Jacquelyn’s condo where I could just walk straight onto the beach. Unfortunately, I backed out of the driveway and straight into a big rock that was a couple of feet off the driveway just beyond the grass. I was probably still drugged up. I rammed my moms new Lexus SUV into a rock and scraped the hell out of the bumber/mud flap area. I was freaked out. My dad get’s so mad over the smallest things… how was I ever going to tell him this?!?! I called my mom and told her, called Jacquelyn and Jessica, texted pictures to them and Patrick. I decided I would leave and go down to the beach. Unfortunately, as I pulled up it started to pour. Torrential downpour. I went back home. I think I had my mom tell my dad. I was freaked out to see his reaction. Let me tell you…. The cancer saved my life. I think if I were to not have had cancer at that time, I would have been shot. Folks…I’m still here today! Thanks dad!
I carried on with my life. Tried to get back to work, but there was a lot of pain in my neck. As a barista, you are moving non-stop, so it just wasn’t doable and I was able to take nearly 3 months off work to get through the rest of it all. After the 2nd surgery, they put me on a thyroid replacement, Synthroid. I will take this every day for the rest of my life. First thing in the morning on an empty stomach and no eating or drinking for an hour afterwards… things can always be worse I spent many nights up until 5 or 6 in the morning. My body was all jacked up and freaked out, but it eventually evened out and I was sleeping normal again.
My 32nd birthday was on December 8th. My family was feeling terrible for the fact that I had to undergo my treatment from December 21st through December 27th and that meant that I would be in isolation and not allowed to have any visitors within 8 feet of me for more than 30 minutes a day. Children specifically could not be around me. So we had a big party. 30 of my closest friends came over for dinner, drinks and a damn good time! I had an amazing birthday!
I made it through the low iodine diet. It wasn’t easy, but I figured it all out. I catered a little bit here and there just to get out of the house. Most people couldn’t believe that I had cancer and was actually maintaining a positive attitude. I felt really fortunate. One, I have an AMAZING family and a handful of friends who supported me with everything I could have ever needed and TWO, I had incredible health insurance and the opportunity to not work. A good attitude helped the healing process. I felt like it couldn’t have been a better time in my life to get cancer. No career, husband or kids to worry about. It was just me… and fortunately, I am okay with me. I became REALLY anxious the night before I went into the hospital to get my pill. One pill that costs $8,000 and will put me in isolation for a week. I didn’t know what to expect, how I was going to feel and what life was going to be like. There were possible side effects. I was reading blog after blog about people’s experiences with this cancer and treatment, but everyone had a different story.
The next day I make it to the hospital and get my pill. It comes delivered in this steel pill container. Pretty hardcore looking. I take the pill along with a long list of instructions for the next week and must leave right away. My mom gets into the front of her SUV and I have to sit as far away as possible from her… in the back, back. I get home and go straight to my room. I must use paper plates. I must shower 2-3 times a day. I must flush the toilet 3 times after every use. This stuff is apparently coming out of my pores… AND I FEEL FINE. It’s bizarre. I had absolutely no side effects. So for a week, I watched the cooking channel and played on my computer and iPhone doing the facetime with all of my friends and family. I got a few nicknames… none offensive to me…GloLean, Jo Glo, and many others that I can’t remember, but I was a superhero… kinda. My mom had a table set up outside of my door in the hallway with a santa bell. Every time she had something for me, she would ring the bell and run off and then I could walk out and get it. On Christmas day I was able to come out briefly (we didn’t ask the doctor’s permission) and I sat at a table by myself about 15-20 feet away from my family. They all laughed and made fun of me… and I made them feel the same. After dinner I went back to my room and they all went to the family room to watch National Lampoon’s Christmas Vacation. I got spoiled having Cancer at Christmas. It was pretty entertaining and a good time of the year to have it, I guess. The best part looking back… I didn’t have to work retail during the holidays… it’s always so insane! Again, there’s always a positive!
The day I was free to leave my room and get back into the real world was amazing. I still had to keep my distance and could have no bodily fluids exchanged with anyone for 2 weeks. Boring! I was single (kinda) anyway… so it didn’t matter. I missed being outdoors the most and the first thing I did was went snowshoeing. And a month later, I went to Peru and Ecuador. I had to have a note from my doctor to fly because there was a good chance I would set off the radioactive detectors in the airports. In March I started training for my first full marathon that was on May 1st. I did it. Done. Never again. I kicked it’s ass and my own. I have a medal. Weeks later I ran in Pole, Peddle, Paddle as your favorite Purple Teletubby. The end of August I took my team through the finish line of Hood to Coast as the twelfth runner. Now I don’t run, although I will probably get back into it some day.
This week is one year since I went in for my first surgery. This last year has flown by. I’m lucky it wasn’t worse that it was. I know so many people with so many horrible things going on and some that have already passed from it. I am still going in to see the doctor several times a year. My medication still needs adjusting and therefore my blood needs to be drawn to figure that amount out. Once a year for the next five years they will perform a scan. Getting the news last week that I am in the clear after a year was a great feeling. Crazy how I have felt so good for the last year and up until a couple of weeks ago, I started getting really anxious. I’m good now. I’m good. Yay!
Hey, you wanted detail. You got it. I hope you enjoyed My Cancer story. Thank you to all of you, especially my family, friends, aquaintances and strangers who made this last year more comfortable than I could have ever imagined for being what it was. I appreciate the heck outta all y’all! XOXO
This is a photo of me on the one year anniversary of the removal of Gloria (my tumor) and the first half of my thyroid. Holding my cell phone with the picture of the tumor to my neck!
Right after my first surgery and still smiling. No more lump.
Such a sweet note that my friend wrote and posted in the Starbucks that I worked at. Thank you, Faye!
They spray the nastiest stuff down your nose for this. YUCK!
I bought the FATBOOTH app while in the hospital after my 2nd surgery. I made everyone and their Mom fat, yes… that means you, too. Stored all on my phone. I laughed, I cried and was a little freaking obsessed with making y’all fat! THANK YOU FAT BOOTH APP!
The day I took my radioactive pills!
Family coming by my room… “Don’t get too close!”
My 32nd birthday party… What a great party!