OK. I guess I could really live without *any* of the side effects. And I think I've probably mentioned a few of these before... but this is the topic for the day. :)
(1) Scalded tongue - it feels like I have a permanently scalded tongue. This sensation sometimes extends into the tips of my teeth (upper front ones), and it is most certainly affecting my taste and appetite. As a result there are many dishes that I avoid because I do not want my appetite for them post-chemo to be ruined by the non-taste of them during chemo.
(2) Nosebleed/nose coldness - every night my nose bleeds and in the morning I have a bunch of coagulated blood/snot to deal with (usually in the shower). This is slowly causing my nostrils to ache, and I worry about what this means for my blood counts, but mostly its just an annoyance. So far, only twice has this happened during the day.
(3) Hypersensitivity to cold in my throat, hands, and foot - really cold liquids and foods make my throat and tongue hurt. In fact, if I eat something cold it makes my tongue feel like it is swelling and I cannot form words as a result. (No comments necessary from friends or family that might see this as a good thing!) Also, my hands are so sensitive to cold now that I have special thermal-insulated gloves by the refrigerator so I can lift the milk jug in the morning. I then microwave the milk to warm it before I put it on my cereal. And my toes in my left foot have been beginning to tingle on the cooler mornings while I walk to work from the Transit Center. Of the three, the foot discomfort is by far the most tolerable.
(4) Tiredness/weakness - which has been increasing (slowly), but it has become more noticeable this last week than before. I am tired of being tired. This is probably due to my natural high-activity habits. I can't tell you how many times I have started to say, "I don't know why, but I just need to lie down," and then realized that this is an expected effect of the chemo. So what - I still could live without it! :)
(5) Low tolerance - I am not sure how to describe this, but I feel less able to tolerate the small daily stresses. Clearly, this is tied to the tiredness that I describe above, but that doesn't mean it isn't a distinct side effect that I would rather not have.
So,let's just say that I am managing these days. And my support crew has been phenomenal! People are just great. Period. I do not think that I would be able to do all the things that my wife has done for me and our family if the circumstances were reversed, and my daughter is a real trooper when it comes to dealing with and understanding her Dad's flagging energy and what that means for doing stuff together. I love them both very much. Our extended family and friends have also been indispensable - in offering meals, fun gatherings, and any other support they or we can think of... This particular "side effect" of cancer is an OK one... and it has and will inform the rest of my life.
So, peace to all you readers out there. I am sorry if the blog has felt silent for a while, and will endeavor to pick up my microphone more regularly. Some days it feels like everything has been said already, but clearly that is not the case.
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2 comments:
You just made me have a flashback to 6 months ago. I can't think of a time when "I know how you feel" rang so true.
Keep nurturing yourself, Ed and keep on pushing. I look back at the posts on my blog from a few months ago and I am amazed and humbled that I got through it all. Which is to say, I am amazed and humbled at you, too.
Here are some things I found helpful:
1. spearmint gum tastes *really* good for some reason.
2. mashed potatoes are good when nothing else sounds appealing.
2. juice boxes can be kept at room temp so you have something handy to drink.
3. I bought mittens and booties that have microwaveable inserts. They were soooo nice. also an electric throw blanket for my evening tv-a-thon.
4. sleeping pills. 'cause sometimes being knocked out is a good thing. especially at night! have you tried ambien CR yet?
I'll add more if I think of anything else that helped me.
Be strong. Don't let the cancer bring you down, man.
Ed, I think you are amazingly strong! I don't know how you keep on with your daily routines without giving into the easier side of things (ie. walking to work rather than driving...although I would have loved to be a passer-by watching you obliviously get splashed with water by the sprinklers...ha ha ha, that still cracks me up!)
Anyway, I know it will make you able to get back to your activites faster, post treatment....but it's still an inspiration! Keep up the good work. You're in my prayers. I love you, Ch
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