I’ve gotten tons of messages and well wishes from people and many are wondering how I’m doing. Someone told me they thought I should have a Caringbridge account so I can let everyone know. NOPE. I have the blog here and far prefer that mode…so how am doing? Here goes…
In one word…Tough.
I expected to have snapped back but that really hasn’t happened. I’m tired.
Kalissa and Kelli have assured me that it is because my thyroid numbers, TSH, are trying to balance themselves out again. All of those get totally manipulated when I am treated and it does take a bit to level off. I didn’t get any of my thyroid meds in the hospital so it’s taking even longer to catch up. I am still quite hypothyroid.
They are also reminding me that “you just had oral chemo”. Yes, I think some of this “meh” feeling is partly that. I was told to expect to have side effects from that for up to 6 weeks after I stopped taking oral chemo and the last time I had that was Friday the 7th. So I have a bit longer to go before I can expect to feel great.
Because of the oral chemo and the terrible face rash I had, they put me on steroids for the whole month. Those were messing with me making it hard to sleep and keeping me pretty wired yet I was tired which is a bad combo. On top of that, the steroids put my blood sugar into wack and I didn’t get any of my diabetes meds in the hospital so that’s taking a bit to figure itself out too. I ended up weaning myself off the steroids early. The side effects were too much and my facial rash is under control.
But…worst of it all is my mouth. I’m having trouble with my salivary glands. This is a common side effect for people who are treated with Radioactive Iodine. For some reason, the radioactive iodine moves to the salivary glands and creates havoc. My mouth is like one GIANT canker sore…it feels like I burned the entire inside of my mouth. I can’t taste food (No I don’t have Covid). I can taste but it’s all metallic tasting and doesn’t taste normal at all. My mouth is painful even when I don’t eat. My tongue is swollen and super sore.
On top of that, my jaw bone joint on my right side is a mess. At the joint near my right ear, it’s painful to the touch and is swollen. My jaw now pops out of place. It hurts to eat and to be honest, it’s easier not to. (I know, I’ll eat.)
I talked to the doctor. Here’s what I can do about it. Ice my jaw…I do it like this so I can still cross stitch. I am dedicated to cross-stitch.
massage my jaw
suck on sour candy
drink water by the gallons
It’s hard to drink when it tastes like metal. It’s hard to suck on candy when your mouth HURTS.
It should resolve itself in two weeks. In the meantime, it’s super annoying.
Another problem I’m dealing with is not having the best sense of touch in my fingers. It makes cross stitching hard but do-able. I’m just slower.
See what I did to my thumb? I cut it first with a kitchen knife when I was chopping veggies for a stir fry….then cut it two days later with a kitchen scissor. I just don’t have the feeling in the tips of my fingers to pull back or judge where a knife is going to hit. WEIRD. I know.
This has been super sore. One might think I can’t feel it …but now I can feel it.
Everything on me is dry…dry lips, dry eyes, dry skin…DRY.
Brain fog. I feel a little off and not as sharp. That’s the thyroid levels and the oral chemo.
I am super cold much of the time. Again, that is related to thyroid levels. Until your thyroid isn’t working or you’re dependent on thyroid meds, you really don’t realize everything a thyroid does. They are amazing little guys that are HIGHLY underrated. Right now I am still hypothyroid.
I know that sounds like a lot of complaining but you all have been asking and I want to be honest.
BUT…more than all of that. I am THANKFUL. I am so thankful my cancer was treatable. I am so thankful I was able to be treated. All of this stuff that you just read is a bump in the road. I am on the mend it is just going to take longer than I expected. All of these are manageable side effects that will go away. I just need to be patient. I am super thankful I’m still off work and can take it easy.
Another reason I’m thankful. There is now a shortage of Radioactive Iodine. I belong to a Facebook group for people dealing with the low iodine diet I was on. Many of us are on the diet with the intent of getting Radioactive Iodine treatment.
After I got home from the hospital last week, I started seeing a few posts like, “I’ve been on the diet for two weeks. The hospital just called and canceled everything because they can’t get the radioactive iodine in.”
Then towards the end of the week, there was this…
Ah…that freaked me out a bit. I was SO THANKFUL I got my dose.
You might remember that when I went in I had to swallow EIGHTEEN pills to get my tracer dose because they couldn’t get the liquid form in?? The normal liquid form would have been like a shot’s worth.
Um…WOW. I can’t imagine if I had gone through the oral chemo and the diet just to be told that they couldn’t get the meds. I would have been heartbroken.
Worst is this…This message came through the Facebook group on Friday…
“Well just got a call from my nurse at Mayo Clinic in Rochester Minnesota. She informed me that there is a supply shortage of IRP. Was scheduled to go in the first of the week to get the shots of thyrogen and then the iodine radiation pill but no guarantees that the pill will be available. So it looks like I’m going to be rescheduling. I would advise anybody that is scheduled for next week for the iodine radiation pill wherever they’re at is to call to find out if it’s going to be available. Bummer”
I went to Rochester Mayo Clinic. This really could have been me. She is only being treated two weeks after I was. WOW.
This was pretty much all it took for me to REALLY embrace the side effects I am having. I am so thankful for them because if I didn’t have them, it likely would mean one of two things…I was dead or I wasn’t able to be treated because of the shortage. I could have been one of the unlucky people who are now having to postpone their treatment because of shortages. I can’t imagine the head game that could play in people.
So…bottom line. I’m not doing great. I’m not doing terrible. I’m hanging in there. Most of all, I’m thankful…because I was able to get the medicine I needed and I’m moving forward.