This is a graphic and VERY personal post. I have debated for a while about sharing all this very personal information that I’m going through but I figured I would. I searched for several days NON STOP to find someone going through a similar situation and couldn’t – so hopefully this can help someone…somewhere..someday 🙂
For the past month, I’ve been going through a LOT. I’ve hinted a few times on my Facebook Page about some medical stuff I have had going on and expressed my concern but I have yet to explain what’s going on with me.
Now is that time.
I feel like I should share my health issues going on to prove that no matter what your healthy habits are, health issues can happen to anyone. You always need to be proactive with your health and go to the doctor when things don’t seem right.
I’ve been keeping a diary of my thoughts through this whole process and I thought I’d share part of it with you guys.
So…here’s my story… (and the reason I’ve been pretty MIA lately)…
Around April of 2014, I noticed that my right lymph node in my neck was enlarged. I was used to having an enlarged lymph node once in a while but those always came along with a sore throat or a cold. This time was different because I wasn’t sick. I just shrugged it off and figured it would be gone soon.
A month later, around May, I checked a few more times and it was still there, swollen & painless. I remember mentioning it a few times but just figured it was from my poison ivy incident I recently had or the steroid shot I had in my neck in hopes of helping my neck & back pain. I continued to brush off my swollen lymph node. It was about the size of a golf ball (a little smaller) when you touched it. It was a bit moveable and wasn’t hard. The growth wasn’t too obvious if you looked at me unless I looked up. When I looked up, you could see it and it looked pretty frickin weird!!!
Then comes June 2014 and I’m in the middle of a the most stressful time of my life. Ryan and I are working on renovating all of our 6 rental houses to get them ready and find tenants to move into them before we make a huge life change and move across the country.
Ryan was in Ohio at a Bachelor party and I spent the weekend showing one of our rentals and trying to find tenants to lease it.
On Sunday, June 22nd, I met my newest tenants at Starbucks to sign some leases (Yay!!). I was really excited on the way home and couldn’t wait to tell Ryan all about how I found tenants and got them to sign a lease all in a weekend where he was out enjoying a bachelor party with his boys. I didn’t need his help. I felt successful. I was on top of the world!
On my car ride home, I touched my neck and realized the lymph node was STILL swollen. This was the first time I started to worry. I started thinking back to the first time I noticed it and realized it had been around 3 months since I first noticed it. “That can’t be right”, I thought...so I did what everyone does these days and Googled it.
I typed into my iPhone “swollen lymph node for 3 months”. I instantly had words jumping out at me such as “Cancer, lymphoma, Hodgkin’s disease, leukemia, HIV & Mono.” I started praying that I had mono considering the other options.
Within 5 minutes of browsing from my iPhone, I diagnosed myself with almost every chronic disease you can think of. I began to freak out and started crying on my car ride that was once so exciting and fun just a few minutes before. I was instantly overwhelmed with worry.
Here’s a picture of my neck…
In the picture above, you can see on the left (my right side), there’s a lump right under my jaw line. That’s NOT normal.
I got home to find Ryan posted up on the couch because he had just got back in town after driving 6 hours from a crazy bachelor party weekend. He had hurt is back really bad so he was struggling enough as it was before my tornado of emotions came storming through the door.
Poor Ryan..I came home a hot mess!
He didn’t know where all this was coming from until I showed him my new lump in my neck and told him it had been there for 3 months now. He instantly said “we need to schedule an appointment with a doctor to get it checked out.”
When he says I need to go to the doctor (which never happens – he avoids doctors at all costs!), I knew it was at the point of possibly being something to worry about.
Monday morning came and I called to get a primary care doctor.
Who doesn’t have a primary care doc? me! I feel like the only adult to not have a doctor. Oh well… I never go to the doc…unless it’s the lady doc of course 🙂
I found a doctor within the hospital I work at and saw him that afternoon.
My Doctor did a physical exam with me and asked me about my family history & symptoms. He felt the lymph node in my neck as well as the other lymph nodes in my body to see if any others were swollen. He confirmed that it was for sure enlarged and wanted me to have blood-work done immediately.
My blood-work papers said I had a neoplasm (tumor) of the submandibular lymph node. This is my first doctors initial thinking.
His sense of urgency scared me but I knew it had to be done.
As soon as I left the office, I went to get my blood drawn at another clinic closer to home. Blood-work wasn’t too bad. Those needles aren’t terrible.
Needle #1 – done!
Tuesday around 10 am I got a call from my doctor saying he got the results from my blood-work back already. Talk about FAST results!!! He said the results were good. My blood count, cells, thyroid and parathyroid were all fine.
I went to work Tuesday and finally decided I needed to tell my parents. I didn’t want to burden them with my health scare so I was putting off telling them for a while. When I told them, I got very emotional. I was at work and emotions + work is never a good combo. I told my boss I needed to go home and work from home for the next few days. Thank God I have such an understanding boss!
The next step was a CT scan which was scheduled for that night (Tuesday afternoon.) We headed to the CT scan and I was super scared at this point. This is the point that the lump in my neck will get scanned so the doctors can look at it up close. I got taken into the scanning room and got an IV in my arm. I had no idea that I was getting an IV that night and I’m kinda glad I didn’t know because that would have probably freaked me out too much before hand. They put me into the CT machine and took a few pictures and then took me out to pump some iodine/saline in my body before taking the second round of pictures.
OH MY GOSH…when they put that saline stuff in my IV, she warned me that I would feel really hot at the top of my head and then it would move down my body and eventually make me feel like I was peeing on the table. She was totally right. It was the weirdest feeling EVER. I felt like my vagina was on FIRE (sorry TMI haha) and It felt like I was peeing everywhere. haha. Good thing that only lasted about 45 seconds because it was a bit too weird for my liking. I was moved back into the machine for some more pics. The whole CT scan process only took about 20 min.
She gave me a CD with all my CT scan pics on it and told me to drink a bunch of water that night because of the saline in my body.
Needle #2 – Done!
Wednesday morning came and around 9am my doctor called again. MAN, he’s FAST and I LOVE that!!! Waiting is the hardest part and he’s doing a great job at getting shit done, quickly!
I tensed up and prayed to God that this wasn’t the phone call where he would say it looks like a cancerous lump.
Please no. Please no.
He started the phone call with “I have some good news”.
Phewwwww I breathed a sigh of relief and listened to what he had to say. He just heard back from the radiologist who reviewed my CT scans. The radiologist said it was most likely a branchial cleft cyst. From the look of the scan, it appeared to be non cancerous but they recommended me getting a biopsy as soon as possible to be sure.
Look at that thing…when I look up, it’s so obvious!!!!
Wednesday afternoon came and I had my appointment with an Ear, Nose, Throat (ENT) doctor. Everything was moving so quickly!!!!
We talked about everything going on and I showed him my recent scans. He suggested I do a biopsy that day. I agreed and was instantly laying in a little operating room. They stuck a needle in me to numb my neck but MAN I wish they put more of that numbing stuff in there or wish they had waited a little longer because by the time they pricked me with my first biopsy needle, I think I felt the whole thing.
After he finished the first needle, I thought I was done but then he told me had 3 more to go. WHAT?!? So 4 big needles to my neck?! Yep. They took FOUR huge fine needle aspiration biopsys…FOUR! I had no idea I was in for that madness when I walked through the door that day. I’m not going to lie. It hurt.
Ryan took a video of my fine needle aspiration biopsy but It’s really hard to watch and super gross so if you have a weak stomach or hate needles, I’m warning you – DON’T watch this!!!
Needle #3, 4, 5, 6 & 7 – DONE!
I went home that night and had to ice my neck. It was really sore and bruised. It hurt to look right since the shots were on my right side. It hurt way more than my recent epidural steroid shot I had to my neck in hopes of helping my neck/back pain.
(Right after my 4 fine needle aspiration biopsys – Ouch!)
Gosh I’ve been a medical mess lately!!!
But at least I got a sucker!!!
The next step is waiting. I wait to find out if I have cancer or not. I have to wait up to a week to get the results back to find out if the tumor in my neck is cancerous at all. I’m saying my prayers and trying my hardest to not think about it, even though that’s impossible. This could be the longest next week of my life.
It’s Wed, July 2nd and I still haven’t heard back from my doctor with my biopsy results. This is torturous! It’s been about a week since I had my biopsies done. I’ve called the office several times and they don’t have any answers yet. The nurse called me yesterday just to tell me that they haven’t heard back about my results and there’s a possibility they wanted to do extra testing on my tissues.
Extra testing?! That’s never good!
Here are two images from my CT scan. You can see the dark grey tumor on the left.
By the way..why does it look like I have a very angry face living inside my neck? haha do you see that face in black? lol
THIS scares me. If they have to do extra testing, that must mean there’s something wrong, right? If it was benign, they would know instantly and give me the thumbs up, right?
I made myself try to get out of the house and have fun with some friends to get my mind off everything. We went downtown Indianapolis to watch the World Cup game – US vs Belgium (we lost…boooo). I had some drinks and had a fun night.
I got home that night and showered right away. To my surprise, I found a rash ALL over my stomach, chest, back and thighs. I have NO clue what’s going on with my body but now there’s a rash to make everything even more stressful. I stayed up pretty much all night Googling different types of rashes and why it suddenly showed up on my body. It doesn’t really itch, it’s just everywhere and really red.
I have an appointment Thursday with another ENT doctor to get a second opinion on my neck mass. I’m going to bring in my CDs with my MRI and CT scan and see what she thinks is going on. I’ll hopefully also talk to her about my stupid new rash.
When am I going to catch a break?!
Wednesday, July 2nd, I just met with a new doctor for a second opinion and I loved her. She gave me an exam by pushing her fingers down my throat (hello gag reflex) and also did a scope. The scope was a camera that they stuck through my nose and down into my throat. She let me watch the video of it afterwards but that was not a fun feeling!! I’ve never had a scope done and there are no words to describe the weird and not pleasant sensation of having a camera stuffed down your nose 😉
She said the scope led her to believe that there doesn’t seem to be any other signs of issues in my ear/nose/throat except for the mass I already knew about. We have to wait to get my biopsy results back before she can tell me the exact route she would take to handle my situation.
She said if it IS a branchial cleft cyst like the other radiologist though, then I would have to surgically remove it. If it’s something else (non cancerous), than there may be a less invasive way to treat it.
It all comes down to more waiting for those damn biopsy results!
As I finished writing that last sentence my phone rang and it was the doctor.
THANK GOD IT’S BENIGN!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
I’ve never been so relieved in my life. wow I can finally breathe!
It is what the doctor thought, it’s a branchial cleft cyst which will need surgery to be removed. If I were to leave this mass in my neck, it won’t ever shrink down but could get bigger, could get infected and could become cancer in the future. There’s also no way to test the entire mass for cancer unless I remove the whole thing by having surgery.
So that’s where I stand. I have to wait to schedule my surgery but I’m guessing it will be at the end of this month. I will have to be put to sleep while they open my neck to remove the mass.
After surgery, I’ll have a week of recovery and then I’ll have a big scar on my neck for the rest of my life. It’s hard to talk about that but I’ve finally come to accept it.
I’m so scared for neck surgery but hey..it could have been worse.
Gotta stay positive.
If you can all keep me in your prayers and pray that when they remove this darn thing, they will test it again and confirm that it was not malignant. I’d so appreciate your thoughts!!
Sorry this was such a long post. Believe it or not, this was the edited version of my diary I had been keeping. There have been a LOT of emotions and stress going on over here in the past couple months.
With all this stress I also have gained quite a bit of weight. I have not been to the gym in a long time and have made very poor food choices. With my surgery coming up, I’m sure my diet and activity levels will be affected even more but I’m trying to stay moving and positive.
I’m excited to have all this eventually behind me so I can finally get back on track and lose the extra weight I’ve put on and move FORWARD!
The main reason I shared my very personal story with you is to tell you to be sure to stay in tune with your body. Even though you may be in the best shape of your life and eat well, something like this can happen to anyone and you must get it checked out!
To this point, I’ve heard this wasn’t caused by any dietary or environmental factors, it was a birth defect that just happened to grow now. Lucky me, right? Time to take charge and get things taken care of.
If you have any thoughts or comments, please post them in the comments section below. I’d love to hear from you!!