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Esophagitis and brains April 12, 2018

Posted by Judy in Musings.
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I realized after several people poked me about the brain MRI that I never shared the results!  I guess that got lost in the rollercoaster that has been the past month.  The good news is that my brain is clear, no problems.  Huzzah!  I do have some spots in the bone marrow of my skull, but that is consistent with bony disease in my body.  I honestly don’t know how much bony disease there is at this point, but no one seems to be worried about that, so I’ll choose to not worry as well.  I’ll just focus on the fact that my brain is clear, for now.

My current issue is something called esophagitis.  I just finished 10 rounds of radiation to my spine in the t2-t4 region (which is where my compression fracture is) and the l2-l4 region (which is lower down where I was having pain).  When I signed the consent, the list of possible side effects was enormous.  The radiation oncologist is very thorough in explaining, which I appreciate.  But the long list means that I didn’t really internalize everything on the list.  I finished the spinal radiation on Thursday of last week.  Two days later, on Saturday night, I noticed that it hurt in the middle of my chest when I burped, or when I ate food.  I’d swallow a bite, and a second or two later, I would feel pain when the food got about 4 inches down my esophagus.  My dad had the thought that maybe it was a result of radiation, since the discomfort was exactly in the t2-t4 section that was radiated.  After talking to my oncologist on Monday morning, he seemed to think that was a likely cause, but wanted me to talk to the radiation folks.  Sure enough, when I mentioned the pain to them they said I likely had a mild case of esophagitis, which is an inflammation of the esophagus.  Fun!  So now I take a liquid an hour before I eat that coats my esophagus so that I can eat without pain.  The rad onc said the pain should clear up by the end of the week.  So far, I haven’t noticed the pain diminishing, so I’m feeling skeptical that it will clear up, but I’m trying to stay positive.  At least I’m not able to eat without pain with the help of the very expensive coating stuff.  As an aside, I’m SUPER glad that my dad was with me when talking to the rad onc, who was originally going to prescribe some other compound.  My dad asked what was in the compound, and we discovered, dun dun dun, lidocaine.  Yeah, can you imagine me drinking something with lidocaine in it?  My throat would close up immediately, I so allergic to it!  Phew, dodged that bullet!

Anyway, here’s a few more quick updates.

  • Pain meds are doing a decent job of keeping my brain tricked into thinking there isn’t pain.  I’m also hoping that the radiation I had to my pelvis will also help with the pain so that I don’t have to take as many pain killers.  I mean, I take the strong meds because I need them, but I’d definitely rather not be dependent on morphine, ya know?
  • I’m finishing up my 2nd cycle on Xeloda.  The main side effect is stomach pain and nausea.  I dry heave pretty much every day.  As awful as it sounds, it actually is really nice to be able to dry heave because then my nausea instantly disappears.  Hey, at least food isn’t coming up!  (Aren’t you glad I just shared that! lol)
    • After one more cycle, I’m going to have another PET scan to see if Xeloda is working.  I’m praying that it is doing it’s job as I REALLY don’t want to have to start up IV chemo again!

And, that’s a wrap!

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Oh, the pain! April 2, 2018

Posted by Judy in Musings.
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Oh my goodness gracious . . . . . so. much. pain. I’ve been up since 1 with bone pain. I always said that if I ever went metastatic, I wouldn’t want bone mets, because it’s the most painful one. Of course, it’s also the one that allows you to stay alive longer, so it’s a big tossup. I’m here to tell you that the pain is intense.

I got up and walked around, which is the only thing that made it better. But my legs are weak and tired, so I couldn’t really keep that up. I had to wait 45 before I could take any pain meds, then I loaded up. But the pain was still there. I couldn’t lay down, couldn’t sit, couldn’t stand, so I just tossed and turned in bed and moaned and groaned. Eventually, hubs woke up when The Loose Cannon asked me what I was doing. “My body hurts, buddy.” We got up, and then I just melted down sobbing. No, not sobbing, crying, and hiccuping and gasping. It might have been wailing had it not been 2 in the morning. I cried harder than I’ve cried in a long time. I cried because I hurt so much. I cried because I didn’t know what else to do. Hubs held me. The Loose Cannon held me. They prayed for me. My mom got up, because mom’s are tuned in to hearing the moaning and crying and finding out what is going on with their child, even when said child is 41.

Once I got a hold of my crying, we starting walking around the dresser island, my little 3 generational support entourage and I. After about half an hour, things seemed better, so we decided to try going back to bed. But as you can see, it’s almost 4 am I’m still up. I’m not desperate to get the pain to stop, but it’s still present, and I’m not sure I can get comfortable sleeping, so I’m online getting things done instead.

I need stronger meds. Meds that will fool my brain into thinking that the pain is not there. Thankfully, I see the doctor in a few hours.