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I don't know where to put this, so here it is


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Tonight we went out with two other couples, and it was a party night. Only I don't do "party" like I used to. I just can't do what I used to do. I have a wonderful life, but I can't sit for a long time anywhere, without muscle spasms happening. They are horrible, and no one can tell me why I have them other than "a side effect of chemo". Period.

So we went out to listen to this amazing Jimmy Buffet band on a deck on a lake, and I was happy to go along. But I can't sit there for hours. I just can't. The muscle spasms set in after about 3 hours and then I'm in agony.

But my husband and his buddies were having a grand time, and no one wanted to go. I was starting to writhe in pain, but didn't want to be a problem. So I sat it out, standing and sitting, and trying to not have spasms so bad, I would bend over in pain. I was very sensitive to this because the night before, I had awful spasms for no reason, and didn't want to repeat that experience.

THIS JUST STINKS. My doctor put me on a medication for those with MS and spinal cord injuries. It's Baclofyn. I thought it was helping until yesterday when the spasms were so bad, I could not sleep. *sigh*

I fight being a hyprocondiac. But a few friends have asked me about a spot on my cheek recently. I never thought about it, it was a "beauty mark" in my mind. I had it for years. But in the last few weeks friends have reached out to try to "rub out" this mark. I think it's changed.

So, I guess I need to go in to have it checked. I have an appointment with my Onc in August so I'll likely wait for that. I'm not so paranoid I'll rush in. August is a short time away.

What I have learned from surviving lung cancer is this: Life will never be the same as it was before. Period. I thought I learned this with my Mom and Aunt, Uncle, and Mom in Law and Brother in Law. I mean, how many times do I need to see this disease and it's side effects?

This disease has many twists and turns. We must be flexible in how we deal with it. It's different for each of us. I wish I could predict where it goes in my life, but I can not do that.

It is what it is. I'm tired. I'm wanting to do what I used to be able to do...and I know I can't. Again, I say, It is what it is. And I need to just cherish what I have for today, and not worry about tomorrow. And that is hard to do.

Judy in Mi

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So sorry you're going through this, Judy. One of my biggest hopes for this disease is that there will eventually be good treatments that don't cause the harm and long term problems that today's treatments do.

But, of course, that doesn't help you now. All I can do is send a long distance hug your way.

You are right to have that spot checked out. I lost a friend to melanoma last year, a reminder of how dangerous it can be.

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Judy - I'm so sorry you're having one of those times. Seems to me like having cancer should be enough for one person, but dealing with the getting older issues on top isn't too much fun either. Hopefully that's all the spot on your face is -- my husband has a couple spots on his face that have changed quite a lot -- I keep sending him in to have them checked out but his doctor insists it's just due to "getting older" and there is nothing to worry about.

I think most of us know the frustration of wanting to "party" like we used to and not being able to do it. I can't imagine having the spasms you're having and dealing with that pain. Even without the muscle spasms, I couldn't sit for 3 hours without having to get up. My biggest issue is the SOB from the radiation treatment that keeps me from being able to keep up with most of my friends or family. Most of the time it's not hard to focus on how well I feel and what I can do, but sometimes it is hard not to be frustrated with what I can't do anymore and know I'll never be able to do again.

Partly from reading your posts and seeing how active you have been in helping others, I decided to volunteer to drive people to chemo and radiation. There are lots of things I can't do anymore, but I can drive. It has really helped. It's hard to feel sorry for myself not being able to breath as well as I'd like when I see all of these people struggling through their treatment. Sort of keeps things in perspective. Of course there are still those occasional days . . .

I know tomorrow is going to be a good one.



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