When you start out on this portage the information you are given mentions side effects: acute and longterm. Acute side effects are those that are more immediate and tend to diminish when active treatment stops. Long term effects are those that linger long after treatment stops, or those that show up later. The pamphlets mention those that are most likely to occur and what can be done to treat them. There are so many possible things that can go wrong I can't remember them all or keep them straight in my mind. I think any time I don't feel good or have something that is not right, I will call it a side effect.
Most everyone knows about hair loss, which is something I could care less about. In my case the major things to watch for are diarrhea, mouth sores, fatigue, dry mouth, burning and redness of the skin in the treated areas, sensitivity to the sun, reduced resistance to infection and lowered blood counts. Two weeks into treatment is when we can expect these delights to make their appearance.
I can't have late nights anymore. This past weekend proved that. Have you ever been so tired that you have this penetrating headache and you feel a bit dizzy? Fun, ain't it? I have that now. Hot sunlight makes me feel flushed and headachy right away. I rinse my mouth with salt water several times a day to prevent mouth sores. And there are other things that are showing up but I really don't need to go into all the details.
Not all the side effects are physical.
Last week someone Karen knows went through emergency surgery to repair a blockage. This gal has been a tough survivor. In the past few years she has been through the gamut of treatment and surgeries and now she is at the end of her road. Watching this is tough for Karen and I: contemplating the end for someone else and hoping it is not the path we have to follow. Hoping, but not talking, about that possibility. I remember the awkwardness I felt visiting people in the hospital who were not going to survive. This was back in '91 and '92 when I was going through cancer the first time. I was doing well and not really sure what I was supposed to do. Cheer them up? Give them hope? Sometimes these were people I knew from the support group and we saw each other when we had blood drawn before our chemo treatments. When their counts were too low they took the news gracefully and left for home. It was a time where, if you weren't careful, you could feel bad for being healthy enough to endure another round of poison.
I'd be lying if I tried to say I never think of the end; of being terminal and what that would mean to me, to us, to Karen. I can't ignore it but I certainly don't have to water that seed. Still, something about this weekend made me pause. I found myself wondering how do you know when what you have just done, or seen, will be the last time? I remember coming home from the wedding reception with this great line in my head but, as usual, didn't write it down. Some thing in the program at the reception touched me. I apologize for not being able to remember so I could tell you how the thought planted itself in me. I suspect people in my shoes wonder about this more often than most. Still I doubt you can deny the thought and only a liar would say they have never looked upon a loved one and wondered if they'd ever see them again. All the more reason to be kind, loving and thoughtful in the present moment.
As busy as this past week has been, the good side effects have been worth whatever they cost me physically. Friends showed up and we shared meals and laughter together. Family members came to visit. We played together and slept late on the weekend. Old friends dropped in via email and sent their wishes for a good recovery. Nearly every day, either Karen or I, or sometimes both of us, are touched by the kindness and consideration of others. These blessings come like antidotes to counteract the necessary evil of my treatment. We'll take all of those types of side effects that we can get.
Thanks to all who are supporting us. Even if we don't know you, we know you are there because of the strength you send our way.
Peace,
Mike
3 comments:
as always I am problem solving and want to do something to help. There are some supplements that might be helpful to minimize side effects.
To help with mouth sores Lysine helps suppot healthy functioning of the mucosa,, Alpha Lipoic Acid helps with supporting the nerves - to prevent "burning mouth syndrome", helps with liver detox. Co Q 10 supports liverdetox
Pro Boost - immune support wrks great - I didn't even get the sniffles last year
L-Carnitine supportsheart and muscle mitchondrial function. I can order this stuff cheapif you wouldlike to try any of these option
Most important is to keep laughting & loving. But don't forget to eat good food prepared with love and healing intent. I'll be sending more food your way soon. Love you lots, Lisa
Bugger on the side effects. I am amazed at what a compliant patient you are. You are doing everything right and really listening to your body. Sorry if we added to your fatigue this past week. It was so great to see you both and spend some time!
You most certainly will see us again. Whether you like it or not!:)
Hang in there and eat your sticky mac n' cheese.
Love, Becca and fam.
Lisa,
Thanks for the ideas about supplements to help me. I would like to talk to you about them. And thank you so much for the food prepared with love. I just finished the stew today at work. Such a wonderful flavor. I always like soups and stews and used to beg my mom to make stew for me. I think she liked all her food separate or something.
Love, Mike
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