Oh boy, what a roller coaster it has been since being released from quarantine last Friday morning. When I was released, I received a full-body scan to see an initial reading of iodine activity still in my body. They wanted something to compare to when I do a follow-up scan in several months to see if I need another round of radiation. Well, after two and half hours under the machine, they said there was still too much radiation in my chest for them to get the read they need, so I had to come back for another scan.
After this scan, I hopped in my car and drove to Indianapolis and spent a couple days catching up with family, old friends and truly enjoying some freedom. It was wonderful seeing familiar faces, going to Reece’s wedding and forgetting for a few days all of the medical issues that have been going on the last couple months.
Unfortunately, freedom didn’t last as long as I hoped. When I was driving back to Chicago on Sunday, I was having a really difficult time trying to find a temperature that was comfortable in my car, because no matter how hot or cold it was, I was having a very difficult time breathing. I stopped a couple times, hoping that getting out of the car and getting some fresh air would help, but it didn’t seem to make a difference.
By the last hour of my trip, it was getting much worse–I was trying to sing along with the radio and ran out of breath every couple words and had to take a deep breath. I made it to my apartment and called the hospital where all of my records are (about an hour from my apartment) and they told me I needed to go to the ER.
I recently started my thyroid medication, so I quickly grabbed the info sheet on the medication and read the side-effects, and saw shortness of breath was on there. So, I hoped that this was just the matter of adjusting my medication.
I quickly researched a hospital near my apartment that happened to be in the same medical group as the hospital I’m used to, got in the car and drove myself to the ER. When I got there, I was very overwhelmed because I didn’t understand why I was feeling this way. Even though it was a possible side effect of the medication, for some reason, I wasn’t convinced the extent of what I was feeling was a result of the meds–because they started me on a low dosage. This quickly overwhelmed me, and by the time I parked my car and got myself inside, I was hyperventilating and my hands and feet were tingling and my muscles were spasming.
I gained some control of my breathing and mentally talked myself down from hyperventilating and managed to be back to the difficulty breathing state. I have to admit though, for the first time in this whole process… I was very scared. Everything up to this point I knew was going to happen–every way my body has responded, to surgery, treatment, meds, etc., has all been anticipated and nothing has come as a surprise, but this was uncharted territory. And I was alone.
I was taken to an ER room where a bunch of rude nurses “took care” of me every 45 minutes or so, as I sat there alone. My extended family lives more than an hour north of where I am, so I didn’t want them to make a drive down if I was just going to be released in a matter of a couple hours, so I waited to inform people with what was going on until I knew more.
Eventually they told me my potassium was low, so that’s why I was having muscle spasms (gotta get some more bananas in my system). They gave me a pill for that and my legs, neck and shoulders stopped spasming. However, they couldn’t figure out why I was having breathing issues. They did an EKG, chest X-ray and listened to my lungs, and everything was fine. Several doctors and med students came in asking me all the same questions and asking if I’m just a naturally anxious person who has “episodes.” The nurses made me feel like such an inconvenience for being there.
As much as I hate to admit it, I had my first break-down since being diagnosed two and a half months a go. I sat in this little room alone and scared, feeling foolish for being in the ER and saddened by the lack of understanding from the doctors. I just sat there and quietly wept. My eyes were closed, and it just seemed like an endless faucet.
Eventually, I redirected my focus. Between deep breaths and tears, I hummed to myself a song by All Sons and Daughters called Reason to Sing. It’s a kind of lament, and it was the first song that came to mind.
I need a reason to sing
I need a reason to sing
I need to know that You’re still holding
The whole world in Your hands
I need a reason to sing
Will there be a victory?
Will You sing it over me now?
Your peace is the melody
You sing it over me now
While it was difficult to muster out any tone, this exercise calmed me down and put my heart in a posture of prayer.
The rest of my hospital visit was more tolerable and the people I met from this point on where much more accommodating and shared more in my concern than making me feel dumb for being there.
Eventually someone came in and said they wanted to draw more blood to check my thyroid levels and they wanted to keep me overnight for observation and more testing. Because of the cancer and radiation treatment, I am at a higher risk of blood clots, so they thought that could be the cause. They had already checked for blood clots in my heart, but they decided to do an ultrasound of my legs to make sure they were fine. They were.
After about 7 hours in the ER, I told my roommate KK what was going on (she wasn’t happy that I waited that long…haha. Sorry!), and she immediately dropped what she was doing, went home and grabbed some things for me and brought me food. I was so happy to see her.
They transported me to the 7th floor, which according to my hilarious transporter, has the second best view of the city. It was stunning.
KK stayed with me for several hours that evening. I hadn’t seen her since before I was quarantined, so we had a lot to catch up on. It was a wonderful distraction and a very memorable night. She left a little before midnight, and I tried to sleep. I think I managed to sleep about two hours. The location of the IV and all of the things attached to me, didn’t really allow me to move much, so I just kind of sat there.
The next day, they were able to tell me that my TSH (thyroid stimulating hormone) came back at 71.850, when the normal range is 0.35-5.0. However, this is not surprising because of my surgery and treatment. I thought this was the case, and I thought this could be causing my breathing issues, but their on-site endocrinologist said that’s not the case. She told me that she was concerned, because even with all of the health struggles I’ve had in the last couple months, nothing should cause shortness of breath. Even though a side-effect is listed on the meds, the extent of what I’m dealing with is not normal.
They eventually allowed me to be released, even though nothing really has changed. I just wanted to go home–and they agreed since they knew I was having my follow up full-body scan today, and that could give even more answers. They also released me with the understanding that I’ll follow up with MY endocrinologist in the next couple days to get his opinion.
FUNNY STORY: When the nurse finally told me I could change and get ready to leave, I grabbed the plastic bag that they put all of clothes in when I changed into the gown and dumped it on the bed. It didn’t take long for me to see that they had managed to lose my shirt in the process. So, I had skinny jeans, boots, and a cropped leather jacket that I had to sneak out of the hospital in.
Below shows the highest I could pull up my pants and the lowest I could pull down my jacket. When I walked, however, it definitely didn’t stay this close together and most of my midriff was showing. When I walked outside in the 40 degree weather to find my car, I was getting quite a number of looks with my attire and especially with the bottom of my rib tattoo sticking out on the right side. hah. Classy.
Today I had the full body scan and they were able to get a decent enough view of everything–though there was still a lot of “activity” in my neck, which isn’t surprising, considering that’s obviously where the thyroid cancer initiated.
The radiologist did tell me something interesting, though. She said that my pre-radiation blood work showed a high level of thyroglobulin, which tends to be a “tumor marker.” Meaning, there’s a good chance of a tumor that wasn’t removed in surgery. However, this was before radiation, so we’re hoping the radiation took care of it. We have no way of knowing at this point.
I could really use prayer right now, friends. I still have trouble breathing off and on throughout the day, especially in the car, when talking/singing and when lying down. The worst part of this has been continued frustration when it comes to getting in touch with doctors, my endocrinologist, etc. to talk to them, get my results and schedule appointments. It’s been discouraging to feel as though there is no sense of urgency or care to press forward in figuring this out. It’s also pretty isolating.
I have been learning the importance of facing suffering head-on, articulating it for what it is and remembering that it is a result of living in a broken world. The tendency to downplay suffering and see every serious struggle as a part of a process of “becoming” a better version of myself is a twisted understanding of the gospel and lacks the need for a Redeemer. When I stop thinking about how I’m going to better myself through this process, I can then focus on the beauty of grace and God’s promise to be there through the suffering. It’s a mental, spiritual and emotional paradigm shift that brings freedom.
“There’s nothing like suffering to remind us how not in control we actually are, how little power we ultimately have, and how much we ultimately need God.” Tullian Tchividjian, Glorious Ruin
3 thoughts on “Hanging in there: post-radiation and the ER”
…and it is the beauty of that Grace that will be your strength. praying. grateful beyond words for your sharing your journey. climb that hill…blessings!
You are on my prayer list!! Having gone through this as well I understand how scary it can be at times. I had a thyroidectomy because of a tumor in 1998. I had issues with heart palpitations and breathing but for me it turned out to be stress from work and going through the surgery, radiation and scans. I got myself very worked up. Again I will be praying for you! Let me know if you have any questions.
I am sorry to hear about the side effects you experienced from the radiation, but I’m happy to hear you are doing better now. It’s not been over 2 months since my treatment and being on my thyroid meds and I feel almost 100% normal. The first month or so my synthroid dose was not high enough, so I had to increase the amount. I have a lot more energy now. So, although it seems rough now, soon you will be able to feel back to normal. Keep your head up, you are so strong! 🙂