Sorry guys, it’s been to long. I keep meaning to post but then not making time for it or not feeling like it.
Food has tasted pretty much like I’d expect it to for a week or two now. Haven’t retried ketchup though (I did say that ot tasted SUPER sweet and really vegtablely to me the last time I tried it didn’t I?). I have a couple problems with food right now.One is that I can’t eat much at one time. For example at Taco Bell yesterday I ate a hard shell taco and most of a regular nacho and was stuffed. Fucking ridiculous. The other is that because I can’t eat much at a time I get hungry every 3 or 4 hours even in the middle of the night while i’m sleeping! Fucking blows.
Another bigish problem is I get hungry, like my stomach becomes uncomfortable and I can recognize that it’s hungry but I don’t actually feel like eating. Food isn’t really appealing, even though now it tastes good like it should. So I have to force myself to eat, which mixed with having to eat all the time sucks.
Marcia, dr. Kaminer’s nurse said that both things are normal for someone who’s been through what I have but that doesn’t make it suck any less.
I still get winded/heart beating fast real easy, like from taking one or two half flight of stairs in the house or even waking across the room to fast some times. It’s not nearly as bad as when I first got home but it’s still quite prevalent and annoying.
I’m also pretty weak in comparison to what is normal for me. Stuff feels heavier than it should be and I get tired from not that much walking. I put real shoes on for the first time in two months (I went into the hospital wearing them, other than that been wearing super light sandles) and I was very surprised that the shoes felt heavy!
My legs are doing pretty well. Right now I just have to take care of the big scars from where the blisters were. I have to put lotion on them every night. I’m supposed to wear compression socks bit they’re a pain in the ass to put on because they take so long to smooth out the lumps, so i’ve just been wearing my normal socks and pulling them up as hogh as they’ll go, works decently for compression actually and covers most of the scars to protect them.
As of a few days ago I’m no longer taking any OxyContin. Started out taking 120mg twice a day and slowly went down to nothing. Doc told me to lower the night dose by 20mg, do that for 2 or 3 days then lower the morning dose to match, wait 2 or 3 days then repeat. This is to try and not make me go through withdrawl. Took basically a month to get off it.
Now, you may be wondering why I posted the previous post about depression, etc, well, it’s because a few days ago I decided i’m depresed and have been for 2 or 3 weeks and am tired of feeling like this. Some days were better than others and doing stuff helps (going to the grocery store, low key hanging out with my bro or dad, hanging around the store I work at, etc) make me decently happy in the moment and helps me be less sad/symtomatic of depression (like feeling like crying randomly) when I’m done doing said activity but it is still there.
I’m not sure exactly what brought it on. I’m definitely getting frustrated that I’m not farther along to feeling normal. It’s been two months since the infusion and one month since i’ve been home. I’m definitely much better off than when I got home bit i’ve still got a long way to go to get back to normal. I’m tired of being sick/not up to snuff… It’s been fucking years at this point.
Anyway, like I said, i’m tired of feeling like this so yesterday I contacted dr. Dragon ’cause I knew he’d get back to me quickly and he suggested contacting the social worker that works in the cancer center. So I did. She can’t perscribe anything but dr. Kaminer can, so probably talk to the social worker some and try and get dr. Kaminer to perscribe something. Thursday was pretty bad, friday was decently better and today has been ok.
All that said, whenever I see dr. Kaminer or Marcia and tell them how i’m doing, they are always excited about my pergression and say i’m doing great and much better than the last appointment. So that’s something at least.
I haven’t done the pet scan or ct scan to check the lumps are gone andan MRI for my hip but I will be scheduling that on monday for later in the week or the followong week. I’ll post as soon as I know something.
Your online presence has been 0 this past month and for a couple of weeks was wondering whether something was up. Just glad it’s nothing physical. Also very glad that you’re off of the pain med. Didn’t quite catch whether the depression came before or after the draw-down, but regardless, consider that part of depressive symptoms may be a result of the drug. It may take time, but eventually your brain chemistry should reestablish it’s old equilibriums; especially as you begin to reestablish more and more of your prior activities and habits. There’s an old saying… no pain, no gain. You have exactly the right ideas about how to get over this… purposefully giving yourself things and activities to do, trying to reestablish old habits and NOT giving in to feeling weak. Sometimes the cart has to be before the horse – so while the depression may hinder your desire to engage in normal activities, it’s those normal activities that will help accelerate your recovery… especially when you’re sick and tired of being sick and tired. As your doctors have obviously recognized, you ARE strong, and so already know exactly what you have to do…
I’ve also been missing you online. Not that I feel that the internet is necessarily great for depression(often its the opposite) but I miss having someone to send links to and discuss the news of the day.