Warning: This post is personal. It doesn’t contain anything DIY (although it would be great if this could be). It doesn’t contain home furnishing or decor. It’s not sponsored and doesn’t contain affiliate content. It’s just me, trying to help someone else that may need it. It’s not pretty and it may be graphic to some, but it’s life and it happens. It’s cancer and it sucks.
I debated for a while about doing a blog post spilling my personal life out to the inter-webs. Then I kept thinking about the days and nights I spent hours and hours looking for anything that would help me through this. I found tons of medical data and tons of big words that needed an entire page in Webster’s on their own. What I didn’t find was a lot of actual people who had gone through this. I wanted those answers, answers on how others had coped and dealt with this.
So Where have I been?
Last year right before the holidays I started getting sick off and on. It was almost like a bad flu that wouldn’t go away. I went to my primary care physician and got checked out. During that visit in the fall a few weird questions popped up during my check-up. She was feeling my neck for swollen glands I assume and asked me about swallowing and heart burn. I didn’t think much about it but did mention I was getting heart burn and attributed it to a lot of sinus problems. She wrote my visit off as a sinus infection and put me on antibiotics.
Fast forward to January and another visit with my doctor. Again, the same weird swallow/heart burn question and again sent home on antibiotics for a sinus infection/respiratory infection.
Then a few months ago things started going down hill with my health quickly. I honestly felt like crap. It was as if I had been hit by the flu and hard. My body ached, I was running fevers every few days, I was getting dizzy/faint and having weird palpitations in my chest. I just overall didn’t feel good. This time I just couldn’t write it off as an infection, something was telling me that it was serious. I picked up the phone and called my rheumatologist, who is just an overall great guy and smart as hell. I explained things to him and he immediately referred me to a local cardiologist to have some tests done on my heart.
I was squeezed in that week to see him and started a long line of tests. They saw issues with my blood pressure and the way my heart was actually pumping and scheduled me for a catheter later that week. It was a pretty easy procedure, a catheter through my leg was fed to my heart with a small camera on the end to get more details and to be able to give meds directly to the heart wall under the weak valves. A day or so later I started to feel better, I went back to normal. I started working again and proceeded to normal life. That didn’t last long though. Within about a month I was back to feeling the same as before, yet this time new things were showing up.
The first large swollen lymph node showed up in my leg/calf. My doctor’s assumed it was a small clot from the recent cardio-cath and put me on meds to help.
Shortly after one showed up in my arm and one on the right side of my neck.
My lymph nodes were swelling and bad. I made another call to my buddy Dr. Cheng and asked for help. I was frustrated at this point and getting depressed fast. I wanted someone to help me and tell me what was wrong and fix it. NOW! Dr. Cheng moved fast, he called my primary care physician himself. He had them schedule me to come in the following day and start a full work up for lymph node and blood related causes. He also made it pretty clear they needed to do everything they could and quit dismissing me. I showed up the next day to the doctor’s and again was asked about swallowing/heart burn. This time I asked her about it and why she’s asked me that a few times in the my last few visits. She said then “I think you have a mass on your thyroid, we need to get an xray and ultrasound.” They also proceeded with blood work and another ekg.
The ultrasound was the kicker, a 3 cm mass on my Thyroid. A tumor the size of a large marble, in my neck that had been over looked twice before.
I waited days to get any word about what this meant or how they would fix me. I wanted someone to call me in a prescription and tell me I would be fine in a few days. Then finally the rest of my tests started coming back and the concern started to grow. Between the abnormal results shown in several of my blood counts, markers for tumors and now the ultrasound showed the mass had interior blood flow, all the signs were pointing to a malignant or cancerous tumor. At this point I was somewhat relieved to be honest. Finally someone didn’t dismiss what I had been telling them for months and now they could help me.
They scheduled me the following week for an out patient biopsy of the mass. With my family history of lymphoma, they were leaning to that conclusion but needed to be sure. My husband and dad kept me company while I went through another ultrasound and then a fine need aspiration biopsy of the mass.
I’m gonna be quite honest here…..IT SUCKED! I don’t like people touching my neck in the first place and especially being awake while someone sticks a large needle into it over and over. Yes I was given local anesthetic, but let’s be real here…that doesn’t take away the pressure or sensation of a large needle plunging into your neck.
The entire procedure took about 15 minutes and left a bruise about the size of a quarter.
Then it was time to wait again, which I ended up having to be my own advocate when my results sat on a fax machine for two days. A few days later we had our answer, I was diagnosed with Papillary Cell Cancer of the thyroid. At this point I was pissed, there were so many signs that were skimmed over or dismissed. The heartburn, constant feeling of sinus drainage in my throat, problems with my heart and blood pressure regulating, fevers and fatigue; all of these things are primary signs of thyroid disease or cancer. All of these were dismissed for other things.
I called my mom and dad, because that’s what a grown woman who is sick does. They call their mommy and cry about it. No really, I did and the first thing she did was tell me to breathe. My mom, the strongest woman I know told me to breathe. So you know damn well I did what she said. Then after we talked about the details she said the words that changed everything.
“It’s going to be rough and it’s going to suck, but your attitude going into this will change everything. You have to have a positive attitude and you will get through this and you will beat it.”
That’s what I needed and I started the rest of this journey.
A Treatment Plan
I was referred to a Otolaryngologist or ENT for treatment plan. He immediately set my mind at ease and answered any question I threw at him. He scheduled my surgery that day to take place a few weeks later to remove the mass and partial thyroid. I had a pre-op screening about a week before to rule out any risk of anesthesia or complications.
On July 20th my husband and I showed up at the hospital at 6 am. They proceeded to check me in with all the routine paperwork, weight and vitals check, then off to my pre-op room. I met with the anesthesiologist and then my surgeon/ENT briefly before getting my IV and my first dose of meds to help me relax. At 8 am they took me back for surgery and the last thing I remember is looking at the ceiling.
Waking up in the recovery room was rough, the pain in my neck and throat was pretty bad. My nurses were awesome though and were right by my side with pain meds to make me comfortable. They kept me in recovery for a few hours to manage my pain and check my swelling. They have to determine if you will need liquid meds for the first few days by checking your ability to swallow and tolerate the discomfort.
I was released to go home right after lunch time and don’t remember much of the first day. Although, my dear friend Molly has some incriminating evidence of my drug induced stupor from the day, but we’re not here to talk about that.
I did need lots of pillows and elevation under my head and neck and pain medication.
That first day was rough. I was in a lot of pain and getting comfortable was nearly impossible. By the second day my husband had figured out that a rolled up fleece blanket would help and thank God he’s a genius. That was heaven! The incision stayed completely covered for the first 24 hours and then I had to do my first dressing change. I made sure my husband was around in case I couldn’t handle the sight. It wasn’t too bad though, a little creepy and Frankenstein looking.
The first week was the hardest, it was very difficult to sleep sitting up and supporting my head/neck. Moving about or sitting up was difficult and most of my time was spent icing my neck in between naps.
After a week I had my first follow up with the ENT and the stitches were removed. I was actually starting to feel much better and had stopped taking any pain medication other than tylenol after a few days.
The removal of the stitches released a lot of the tightness or pressure I felt around the incision but did bring on more swelling. When they removed the mass and thyroid lobe, they had to cut through the muscle and one of the tendons in my neck which were then stitched on the inside into the incision with 40+ stitches that take much longer to dissolve. The large bump above the incision is actually the muscle that was sewn back together.
This part is actually what will take me the longest to heal from. It will take about 6-8 weeks for the muscle and tendon to heal to a point I no longer have pain and my full range of motion returns. It’s been about 3 weeks since surgery. I’m sleeping normal again for the most part, getting around pretty well but I still have not gained back all my strength and get tired very easy. I’m taking it easy still, but anxious to get back to full speed. I know my body must recover and every day it gets better.
My pathology reports from surgery all showed that my Thyroid cancer was removed with a clean edge and most likely will not need further treatment. I am still going through a series of regular blood tests to monitor the first two months for any signs of remaining cancer. So far so good!
Thyroid cancer is rare, there are not a lot of personal stories out there for people going through this. I had a hard time finding answers for basic questions. I wanted to know what to expect for the big thing….surgery! That’s why I decided to share this, so maybe someone else fighting the same battle could find my story and maybe rest a little easier.
Yes it sucks, it’s cancer of course it sucks. Yes you will be uncomfortable and there will be bad days, but you get through it. Every day gets easier and before you know it, you’re sitting on your bed or couch rolling your eyes at daytime tv bored out of your mind and ready to go back to LIFE!
I can’t even tell you how great of a support system I’ve had along the way either. My friends, family and TRIBE went out of their way to do anything they could to make life easier on my husband and family during the entire time. Every day we had a new knock at the door with dinner or snacks or grocery deliveries. They made us fat, they made us all fat!!! Haha
A few of the great care packages from all of my friends.
It’s still going to be a few more weeks before I get back to any real physical work, but for now I’m ready to at least get back to being happy and getting healthy!