Get This Girl A Medical Alert Bracelet

Modern medicine ruins and fixes things all at the same time.

Ever since the beginning of this process, I’ve had a love/hate relationship with it. After these last few weeks, I’ve just been feeling very defeated by all the medicines and all of their side effects. Truth be told - that’s just kind of the place where I’m at with things right now.

Don’t get me wrong - I’m very grateful for modern medicine. But it’s like putting gasoline on a fire sometimes, especially when I prefer more natural remedies that tend to have less crazy side effects. I know after this is all said and done that I can focus back on that natural lifestyle more but for now I’m kind of wrapped up in this world of modern medicine.

I go to the hospital multiple times in a week I always recite to myself “I don’t have to, I get to.” I feel grateful to have access to the Mayo Clinic, to health insurance, and to many extras during this time. I don’t have to do these things, I don’t have to do any of it. But I get to - so I cling to that!

Now onto the more unsettling news. In the last week, I’ve gotten two new diagnoses, both of which are believed to be caused by the Immunotherapy drug, Keytruda. So far, I have been administered this drug, just twice. Yup just twice. This drug was added to my treatment regimen due to my “triple negative” diagnosis to increase the odds of a complete response or the likelihood that when they go in to do surgery there are zero cancer cells left. But it has wreaked havoc on my body.

First off, let me rant here.

Keytruda is a newer drug. It was patented in 2014. This means it’s super expensive, and I know my insurance company is footing most of the bill but when I got my first invoice I was shocked that a teeny tiny bag of this stuff costs over $30,000. Yup.

That’s robbery. Okay, rant over, sorta. This whole post is kind of a rant, so sit tight.

Here’s the story:

On November 14th, Mama Cook came down to spend another week with me and was prepared to go to my Thursday healing session with me. Well, when she came down I was already experiencing intense nausea and had been wearing acupressure bands and lying on the couch… all day. She made me go outside and get fresh air (typical mama) because she found me in such a rough state. She took this photo and now I can look back and remember how rough I felt (and looked). But it felt good to get fresh air and some vitamin D - mama’s orders! Pictured here you see a blankie that one of my mom’s friends Cheryl made for me. I snuggle with this thing all day every day and bring it with me everywhere. The best part? Sweet Cheryl even made blankies for Mochi and Tim because we all would fight over this blanket on the couch! It’s just the perfect size and so cozy.

I fought the nausea all day until 2 am when I called my mom from my phone and said “BRING ME MY ANTI-NAUSEA MEDS” and silly me, by then it was too late. I ended up vomiting several times in between anti-nausea meds early in the morning because I got behind on medicating myself. I learned my lesson the hard way and went through all three lines of defense of my anti-nausea meds and was still getting ill, which has never happened to me before, I felt very sick and was concerned the meds weren’t working.

I got sick so many times that morning and day that I ended up calling into the post-surgery hotline just to let them know what I was experiencing. They wanted me to come in and be seen because they wanted to rule out a post-surgery hernia or bowel obstruction. They wanted me to come to Rochester but my mom and I said we would go into Austin ER first to be evaluated, just because it’s so close and convenient. Welp, the wait at the ER was estimated to be 3-4 hours so we drove to Rochester where they had a bed waiting for me on the gynecology/urology floor.

Well, they evaluated me when I got there and were happy to report that I didn’t have a hernia, a bowel obstruction, or any surgery-related complications. That was good news. The bad news was I wasn’t looking well or feeling well and my sodium levels were super off so they admitted me to keep monitoring me, give me fluids, and make sure my sodium levels improved.

I was admitted from Wednesday-Friday and during this time they ran labs, many labs, and tried to piece together a story to try and understand why I was so sick. After many labs, a brain MRI, and two days at the hospital, they sent me home still not really sure why I was experiencing vomiting. Since I hadn’t been to treatment since November 2nd I knew it wasn’t chemotherapy related. So I thought maybe I had just picked up a bug when I was at craft fairs or wasn’t doing well without taking probiotics because my Integrative Medicine doc recently had me quit taking them due to the fact that they can interfere negatively with the immunotherapy drugs I’m on.

My first diagnosis I got while still admitted to the hospital, because of some of my labs they could tell that I have hypothyroidism.

Diagnosis #1: Hypothyroidism

This diagnosis is the least of my worries right now, although I’m not thrilled. This is something that many people in my family have and manage quite easily with prescription meds. Just for me, I’ve never been on or really liked prescriptions, especially long-term. Welp, that’s all out the door now.

The drug has attacked my thyroid and it no longer produces enough thyroid hormones to meet my body’s needs. I was told that this could happen before starting the drug and because of this my thyroid levels would be watched like a hawk. I just didn’t think it would happen after only getting the drug two times.

I was so ready to leave the hospital by Friday. I was going crazy and lowkey wasn’t being nice to people. Sorry nurses and sorry mama. But I didn’t feel good and was sick of being cooped up. When I feel that sick I don’t feel like doing anything - not watching TV, not looking at my phone, not doing word searches, so I end up driving myself crazy because I truly get bored because all I can do is sleep. The last few hours in the hospital I paced in my room and listened to the song “I Ain’t Worried” by One Republic on repeat while dancing in my MRI gown. My mom captured some good raw moments on film and was just sitting there laughing at me going absolutely mad.

We finally got released with orders to get my sodium levels checked again in the morning because they still were low. Okay, I can do that! So finally me and Mama Cook were on our way home. She is such a trooper - I was the sick one and didn’t want to be there I cannot imagine how she felt but she was my positivity and my voice of reason. Being at the hospital for 48 hours is just not a fun time and it makes you so grateful when you are able to leave and go home, not everyone is able to do that with their diagnosis or with their current health.

When I got home I greeted Tim quickly, changed my clothes, and immediately got back into my bed. Wow, sleeping in your own bed and not being woken up for labs in the middle of the night feels so. dang. AMAZING.

I spent the rest of the weekend and into Monday still getting sick, still nauseated, and still having very little appetite, but at least I was home. On Monday towards the end of the workday, I got a call from one of my doctor’s saying that she just saw a test result that came in from over the weekend and it was a very abnormal result. The lab result was for my “Adrenocorticotropic Hormone” and the doctor explained that my adrenal glands are in charge of regulating cortisol and other hormones in my body and the result is very elevated and she was concerned. She explained she that because of this level, they know my body is working overtime. She had called a immune checkpoint team because I had just came off a taper of another steroid and they are worried that with my nausea, that I may have adrenal insufficiency. She explained that I need to get high-dose steroids pretty quickly and to go to the emergency room in Austin.

Here we go back again to my favorite place! I called Tim and explained what the doctor just shared and he came right home and picked me up. The wait at the Austin ER again was 3 hours like it was when my mom and I tried to check-in. This time I said, “I am immune-compromised, is there anywhere else I can wait besides the busy waiting room?” The guy who was checking me in made a call and said that I could go back and they immediately gave me a room. Hmm, I’m going to share that I’m immune-compromised right away each time now because we got the VIP treatment. I immediately got triaged and they understood what was going on and got me help.

My labs showed that my sodium was worse than it was that morning so I ended up getting some fluids and waited to hear if I needed to be admitted (again). After a little bit, we found out that I could take the steroids I needed orally and didn’t need to be admitted (yay!), but that I would need to be on steroids likely for the rest of my life, twice per day (not so yay). While we waited my appetite started to improve and Tim went out at got us Culvers. Even though my stomach felt like it shrank I was so happy getting down a few bites of a grilled chicken sandwich, look at my happiness, and my amazingly stylish outfit.

The next day I picked up my steroid prescription (which I later found out was wrong and not a high enough dose) and was set up to meet with an Endocrinologist nurse the next day to talk about my new diagnosis of adrenal insufficiency or Addison’s disease. I was so proud of myself for not Googling anything that day and I patiently waited to speak with someone to learn what was in store for me.

Diagnosis #2: Adrenal Insufficiency (Addison’s Disease)

Adrenal Insufficiency occurs when the adrenal glands don’t make enough of the hormone cortisol. So yet again I’m left with an organ in my body that is shut down and doesn’t do what it’s supposed to. The three main symptoms of this diagnosis? Fatigue, nausea, and vomiting. This gave me the answers I needed to understand why I had been so ill and on the couch the past 7 days. Hallelujah for answers!

The solution for this diagnosis is again, more medicine. I now take steroids twice daily and have instructions on taking more if I am ill and doing steroid injections if I am very ill. I was also instructed to order a medical alert bracelet in case I am ever unconscious or sick in public and need help. My bracelet will say “needs steroids” to instruct EMTs or first responders that I need steroids, pronto.

Lo and behold the nurse who was training me on my protocols had already met with TWO other people THAT DAY who were on immunotherapy drugs and have received this exact same diagnosis. I found that very interesting. The standard range for this hormone that is off is between 7.2-63 and when the doctor called me she shared my levels were 812. Now I didn’t go to doctor school but I think that’s just a little off.

So, that’s it, that’s my update. Every day I just have to three prescriptions or my whole life will fall apart. Starting this new regimen I already have felt so much better and back to normal so we can only hope things stay this way! Modern medicine is doing its thing and fixing what it broke. I am trying not to think of taking these three medications every day for the rest of my life, but this very well may be the case. But we can always hold out for miracles. The human body is amazing and as I continue to monitor these levels maybe there will be a point in time in which the organs resume functioning on their own again.

At this point in time, we aren’t sure if I will resume the immunotherapy drug and to be honest, I am scared to. It has already attacked my liver, thyroid, and adrenal glands. I’m hoping it wasn’t too busy and also has attacked some cancer while it’s been up to no good in my body. That’s just me trying to be optimistic.

UGH.

I know a girl who could use a cute medical alert bracelet for a stocking stuffer. It’s me, I’m that girl. JK I already ordered one for myself on Etsy and it should be here soon and I’m going to rock the heck out of it.

Here is hoping for brighter days ahead and a smooth next few weeks of healing sessions. (I’m now officially 5 weeks behind my anticipated healing schedule.)

Xo, Breanna