happy birthday to me... almost

 

Let's rewind a bit and start a few days before my birthday...

I had my first cancer treatment day on October 3rd - check it out if you haven't read that blog post yet. Let's just think of it as an early birthday gift since my birthday is October 7th. Great gift, right?!?

If I have to hear "Happy Early" or "Late Birthday" from another medical person, I might have to smack someone. Especially, since I have spent most of the weeks leading up to and after my birthday at a medical appointment regarding cancer. Not really loving my birthday this year. Let's just say, on my birthday, I woke up with a special chemo-side-effect-surprise at 2am. That fun surprise I will share later...

Rewind a Few Days... Update

But first, let's go to October 4th, the day after my grueling 8 hours of immunotherapy and two chemotherapies on the 3rd. I woke up swollen, red faced, and fevering, as well as feeling pretty crummy. I didn't have time to dwell on it since I have 2 more doctor's appointments to tend to on the next day... yikes!

On October 5th I got myself up (despite feeling bad) and went to 2 doctor's appointments. First, I got my hearing checked by my ENT (I have bilateral hearing loss). As expected, my hearing had gotten worse. It is strange because 10 years ago, right before I found out I had cancer, my hearing loss started. Now, fast forward 10 years, and my hearing loss got worse right when this cancer started too. Not sure if it is an odd coincidence or somehow connected. I may never know. 

However, I will say I expect it to change again. Chemotherapy tends to make hearing loss worse, so I am prepared that after a year in treatment I should expect to see more changes to my hearing. For those who don't know that chemo can affect your hearing - it can. 

Immediately after this appointment, I had to book it to the cancer center's testing facility to get a CT scan. Honestly, I had forgotten about this appointment. My husband called me to remind me.. he was like aren't you supposed to be at the cancer center? For some reason, I thought the time was later in the day. I barely had enough time to get there.

When I got there, I thought it would be normal appointment. I didn't realize I was going to have to wait for an hour to drink 2 bottles of water before I could have the CT. My mom actually drove out my medication and waited with me until I was called back. I was grateful she could bring the medication to me... plus, hanging with here was definitely the high point of my day.

The reason for the CT is to have a starting point of where my cancer is and as a way to later compare and check to see if the treatment is working. I want to have an accurate look at how big and how far my cancer is in my lymph nodes (and beyond - if any). And just like any chest CT, it was pretty standard. My really challenge is that I didn't want to use my port for the IV contrast needed today since I just used the port a few days ago for chemotherapy. I am still really sore. I mean I should be sore, right?

As you can see, I am still pretty bruised up from the failed port attempt and the successful one. I am not really excited or thrilled about anyone jabbing a needle into my port currently. My scars are still fresh and the bruising still hurts. I know I have to do it for chemotherapy, but for these other procedures I am trying to use my arm. And my arm, is not really wanting me to use it. My veins are not cooperating! 

So after a few attempts in my arm, they finally got an IV in so I could have a CT with contrast. The one great thing about CTs is they are fast. Compared to any other scan... they are fast and easy. You only have to hold your breath a few times and go through the slight sensation of peeing yourself (which thankfully you aren't) during the scan. 

And compared to everything else I have done... CTs are like stopping to smell the roses!

Now Back to My Regularly Scheduled Happy Birthday Supposed to Be Relaxing Day Blog Post

Now that I was finished with these appointments, I was thinking I could spend a quiet Saturday birthday getting some much needed rest. Sucker!

I woke up at 2am on my birthday with mouth and throat sores. I had forgotten how miserable these are. The memory of these from 10 years ago came back to me pretty quick in the dark hours of the night. I could barely swallow. It felt like my entire lining of my throat was closed up. I didn't want to talk. I didn't want to wake anyone, so I tiptoed around the house trying ice chips, popsicles, and attempting to drink water and hydrate myself. It all hurt so bad. I cannot describe how horrible chemo mouth/throat sores are. I can say it looks like strep, ulcers, and everything else attacked the inside lining of your mouth/throat.

And of course this is going to happen on a weekend. The doctors are all out, and I will have to leave a message with someone and wait for someone to call me back. Since I have had this before, I know I need a prescription for Magic Mouthwash. Knowing that I cannot do anything for a long time meant I had to sit in pain and wait. I turned on the tv and did my best to distract myself from how horrible I felt. I didn't want to bother my husband because there was nothing he could do except be awake with me and why would I do that to him or my kids. So, I waited patiently and painfully until 7am to call the Oncology Group's nurse line. There was no point to call in the wee hours of the night because none of the pharmacies were opened yet anyway. 

And I would like to say that it all got handled easily, but that would be a lie... and why would anyone expected anything to go smoothly in my crazy life. It just doesn't work that way. They easiest part was they required me to do an at home Covid test - which was negative. That was easy... even though shoving something up my nose while feeling like my throat was closed and on fire and throbbing in pain was not easy. 

You would think sending a prescription in would be simple... even on a Saturday. But here is what happened before I actually got the Magic Mouthwash prescription:

1. I had to call the Oncologist nurse line and pharmacy multiple times since the nurse said they sent the prescription in but the pharmacist kept saying they never received it... this took at least 3 attempts of calling both of them and many hours to get it finally handled.
2. My husband also went to the pharmacy multiple times because we had been told the prescription was ready. After lunchtime, and during his 2nd trip to the pharmacy, my husband had enough. When it wasn't ready or in the system again, he asked what was in the prescription and got all of the products (minus the lidocaine since that is not sold over the counter) to make it himself.
3. After purchasing everything, getting home, and making a modified version - we got the call from the pharmacist that it would be ready shortly. Seriously... my husband had just walked in and made it. 
4. After hours of going back and forth, and the 3rd attempt of driving to the pharmacy, I finally got the Magic Mouthwash prescription at around 2pm on my birthday. 

This meant that I spent the majority of my birthday in pain. I went 12 hours in hurting and feeling like I was unable to swallow... and honestly it felt pretty unnecessary and rough. 

I don't want that to happen to anyone else. So, I am going to share how to make your own Magic Mouthwash - in case you or someone you know is desperate, like I was, and needs relief. Here is how to make your own Magic Mouthwash (minus the liquid lidocaine that goes in it). 

HOMEMADE MAGIC MOUTHWASH

Use Equal Parts Of

• Liquid Tylenol
• Mylanta
• Liquid Benadryl

(You can use the Liquid Tylenol's small medicine cup just put 2 oz. of each in it.)

While this doesn't have the full numbing effect, this really does help some. It uses all the other ingredients besides lidocaine. Plus, without the lidocaine you can swallow it which does help if you have sores down your throat. Don't swallow a large amount, as this is generally a gargle and go prescription. I did swallow it from desperation - it tastes nasty - but when you hurt that bad - you don't care!

My Birthday Inspiration - The Smith's Unhappy Birthday