I took a few days off blogging because things have generally been uneventful, which is a good thing right? I’ve been off all medication because the last time I had a fever was on Saturday night, my butt’s at 90%, and my mouth is probably at 80% right now.
One thing I figured out with the magic mouthwash is that you’re supposed to swish it around your mouth and then it makes your mouth numb for 30 minutes. At most, I’m allowed to use it up to 4 times daily. I didn’t feel like I was having a pleasant experience eating food with a fully numbed mouth so on the 2nd day of having it, I started dipping a Q tip in a small amount of mouthwash and dabbing the sore spots so I’d have some relief in eating and drinking. The numbness only lasts about 10 minutes but that’s just about enough time for me to be able to do what I need to do.
My chest and back are generally at a level 2 pain which is manageable but when I sneeze it really really hurts to the point where I’m doubled over clutching my chest, gasping for air, and need a minute to compose myself. I tend to sneeze big so I’m trying to mitigate that for my own sanity. The pain is because all my muscles and tumor are contracting very quickly inside my chest cavity which causes the discomfort.
It’s been a bit challenging forcing myself to get on a regular schedule. When there’s zero expectations of you and all the time in the world, it’s really easy to just be a lump on a stump. I guess you could say I’ve been very productive playing Mario Odyssey? I’ve got 128 moons and 3 more worlds to explore and I’ll be done with the game.
Since I’m a morning person, I like doing the blog right when I wake up. I also have the best attention span so I’ll do some reading early in the morning as well. The challenge is keeping up the focus throughout the day. I set a goal for myself to get all my travel blogs transferred and my video edited by next week.
My dad’s also set a few goals for me. He wants me to help him do research on proper diet for those undergoing prostate cancer treatment. The other day he bought me a new Bible (I have 2 which are in MINT condition and one on my phone). This one has QR codes all over it which provide more context in the reading.
He said that there are 17 books out of 27 in the New Testament which take less than 20 minutes to read. My initial reaction was “Ughhhh fiinnnneeee” because reading the Bible is supposed to be long and boring. But I’ll do it.
Yesterday I had my checkup appointment with Dr. Wiisanen and Dr. Costello at the Mayo Clinic. The reason for the meeting was to set expectations for the following week as I’m starting Round 2 of chemo which will last Monday-Friday of next week. Also because I’ve had a number of complications during Round 1, they wanted to talk about slightly changing my treatment plan to improve my quality of life.
The drives to Mayo seem to be getting shorter each time we make the drive. I’m getting pretty used to seeing corn, cows, horses, and more corn.
We left the house at 8 and arrived at the vampire’s lair for my blood work at 9:40. This area was different than the one that I’ve been going to lately. I could use a kiosk to check in myself and it was much bigger and busier as well.
It just felt like a factory or something. There were easily 100 people in the waiting area and people were being called to the front of the room every 10 seconds. My wait was about 30 minutes and the procedure was like 3 minutes.
My appointment with my doctors was in 2 1/2 hours so we wandered around the campus and grabbed some lunch. Eventually, it was time for my appointment and it went well. My blood tests came back reporting that my neutrophil count was at 2.46.
To explain neutrophils really quick (because I don’t think I have yet) it’s how many white blood cells you have in your system per microliter of blood. 1.0 is the minimum threshold. Normal range is between 1.56 – 6.45. Neutropenia is the term for low neutrophil levels which are .5 and below. This is the point where the body is REALLY susceptible to infection and illness because it can’t defend itself.
I left Methodist last Wednesday at .8. When I was at urgent care on Sunday, it was at .6. All of this was expected due to the chemo medications ravaging my body.
Yesterday’s blood test showed my levels at 2.46. My dad and I were both surprised because it was only 4 days since my last blood test and going from a .6 to a 2.46 is a huge jump. It’s probably that dang bone broth soup my mom’s making me drink…
Monday will be a busy day as I’ll have the PICC line installed in my arm before doing chemo in the afternoon for +5 hours. I’m a little nervous as it’s more invasive than an IV. I’ve kind of avoided doing research into what the procedure will be. I’d rather have them tell me the day of since I need to get it no matter what. The one detail that’s a relief is that they’ll numb up my arm before installing it, unlike the IV.
We discussed using a new medication 24 hours after my last chemo appointment on Friday called Neulasta which is used to stimulate the growth of white blood cells in the bone marrow. I can either get an injection on Saturday morning or they can put a patch on my abdomen on Friday and it’ll have a self timer and inject itself into my system on Saturday which sounds super creepy.
I’m going to opt for the injection since we’ll likely be checking out of the hotel on Saturday morning and can stop by Mayo on the way home.
I asked about side effects and Dr. Wiisanen said that my bones, particularly my legs and hips will ache a lot because that’s where I have the most bone marrow.
Overall both doctors said I’m looking good and the important thing is that I’m drinking a lot of water and have a healthy appetite.
I told Dr. Wiisanen that I’m still having chest and back pain. He said that unfortunately, it’s par for the course and the only thing he can do is prescribe painkillers to deal with the pain. If I feel the need, he’d be more than willing to prescribe me Oxycodone.
When I heard that word, my mind immediately drew red flags because I’m very aware of the pain killer abuse epidemic going on in the country right now. Especially because Joanna has people come into her office trying to trick her into writing them a prescription for pain pills.
Dr. Wiisanen explained that I should try to avoid using Tylenol as a pain manager because it can mask any fevers that they should know about and because the chemo medication is very hard on my kidneys, Oxy would be a good choice as it doesn’t affect that organ.
As of right now, I’m in no need of pain medication but it’s good to know that I have options. Since Joanna’s got a lot of experience with that area, I know she’ll keep a close watch if I do end up using something stronger than the Tramadol.
I feel like I’m walking a very thin line right now where I want to get this treatment over with but I’m not looking forward to dealing with all the physical ramifications of the treatment next week.
Right now, I’ve been off chemo for 2 weeks. The ringing in my ears is gone, I’m pretty energetic during the day, and I’ve had zero nausea since I first came home from Mayo 3 weeks ago. Knowing that after next week, my bones are going to start hurting and all my energy will be zapped away just doesn’t sound appealing even though I know I have to go through it.
My biggest priority right now is trying to convince my parents to let me go see Ant Man 2 in a theater full of germy bacteria filled people while my white blood cell counts are high.
