Ok so I basically slept the Summer away. I didn't mean to, it sorta just happened. So I had radiation until June 13ish, not really sure of the last day exactly but I know my last steroid was June 24. I was pretty tired throughout radiation but Dr. Chan felt it was likely from the commute and steroid sleep disruptions, he was right. Because radiation tired didn't start until July, and people there is nothing in the world like radiation tired. Nothing. I have talked to people who went to work thru it all and I am in awe. Radiation kicked my ass and kicked it good. I slept for about 2 months straight, I didn't want to eat (yeah I know right!), I never needed to go to the bathroom, had zero desire for anything but sleep. And the sleep felt SO good. I don't know if it was the rest or the hibernation effect, but I hated being woken up. It created for quite a few standoffs with my family. For lots of reasons.
For one I think they genuinely didn't want to me to miss the entire Summer (which I did anyway) but I also think it was that this was the first time I looked like a cancer patient. I was bald and in bed and never got up. I imagine for them it was scary, but for me it was peaceful. That is until my mother would grab me by the ankles and drag my ass out of bed (which incidentally is how she used to get me out of bed as a teenager.) And I slept, I didn't just lay there or hide, I mean deep wonderful sleep. It felt amazing, but looking back I'm slightly embarrassed.
Now I know this was a side effect and I shouldn't technically feel shame for it, but the more I think about it the more I realize it wasn't just the side effect of radiation. I think there was a touch of agoraphobia too. Again when I say shame, I don't mean it literally, I know it's ok to feel what I felt. But I wish I had just recognized it instead of resisting looking at what was going on. I was just so resentful because I wanted to retreat into myself for a while and I didn't like being made to feel bad about that. But I know that isn't what my family was trying to do, they were concerned that I wasn't eating enough and that I might be falling into a depression.
Truth is I think a lot of it too was just not wanting to have to tough something out again. I toughed out chemo, I toughed out hospital stays, blood clot scares, a brain bleed, but this exhaustion...I just wanted to wallow in it. Enjoy the idea of having no responsibilities, feeling like I finally was getting rest.
John kept in touch with my oncologist and he became concerned. So I was sent for a blood tests to, among other things, see if my thyroid was functioning ok. I secretly wanted it to come back saying it was not working well so I could say "See, told you I didn't feel well! I'm tired for a reason!" But everything came back normal (except for my albumen which was a little low, so apparently I'd make a pretty crappy hard boiled egg). Then Dr. Krug insisted I go back on the steroid, I was furious! I didn't want to go back on it, I gained 30 lbs on it and my face changed too much. But by this point (mid-August) I had slept the entire Summer away, missed a million opportunities to go away with my husband and daughter, and missed the big summer of Amusement Parks that we had planned. So I reluctantly agreed to go back on it.
After a couple of weeks I feel like a new person. It killed me that the steroid worked, cause I really wanted to beat the exhaustion myself, but it simply wasn't happening. So I have to thank Dr. Krug and John for salvaging what was left of the Summer and for helping me feel like myself. Now I have to ween off of it again, but we have a plan to do it over two months. Dr. Krug kindly gave me leeway to do it on my schedule, with his guidelines. I appreciated that. So this coming Monday I'll step down from 2MG to 1MG. And then I'll step down to 0.5 MG. I actually think it'll work. I feel better and better each day.
On the other hand I can def feel a difference in my brain. I have trouble piecing together what people are saying sometimes and it takes me a minute to catch on to what the conversation is about. And if you don't give me explicit instructions now, you do it at your own peril.
There's another part to this new energy I'm feeling, that I'll explore in the next blog. I put that blog together in my head a while ago, but I can't bring myself to write it down right now, it became way too real recently. So it's just not the time for it yet.
As for updates, I had a CT scan this month, the first since June. I didn't expect to hear anything except for an update on the pesky blood clot, esp. since we haven't seen a change in any tumors since March 9th. So when Dr. Krug said, "Hey your scans look great, you've got some tumors that are shrinking, the one in the liver and the larger one in your right lung (the one that started it all, I call her Queen Momma Oddy). " The clot shrunk a little bit too. I was so stoked, I had NO expectations and instead I got great news. So the Tarceva is not only keeping things in check but it's working a little Overtime too! Monday was a great day. And then there was Tues.
Nothing good every happens on a Tuesday.
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