.http://patreon.com/jolope

.http://patreon.com/jolope
http://patreon.com/jolope

Monday, May 25, 2015

Pain & Possible Pleasure

The last couple of days I have been in a tremendous amount of pain. I was going to say "a great deal of pain," but I don't think it would have come anywhere near close to being accurate. Even "tremendous" I am not sure even works. Many times the docs have asked me about pain levels. Many times it is more of a "discomfort" than a pain. This time, had that question been asked, 10 would have easily have been the answer.

I think it was a gas/constipation issue. I had a scan this past week, and it seems the dye affected me. I felt sick afterward, and also wound up with diarrhea for a couple of days. Then I went back to my "usual" constipation. Someone told me today that that swinging can create gas. Well, I know at least part of it was gas, as I desperately wanted to pass gas, and I kept burping, hoping that I would have a really good, unlady like burp, so that I would be OK.

It just kept getting worse. I was trying all kinds of things. I tried warm water with lemon. I tried Peppermint Tea. I tried sauerkraut with caraway seeds. I tried GasX. I tried Tylenol to attempt to at least ease the pain (no such luck).

I could not get comfortable. I kept moving around, hoping to find the magic sweet spot, or the magical antidote to the feeling I was having. I even called the hotline my treatment center has. I was going to ask if I could take more GasX than the box said I should. Instead, I was told about a Yoga pose that is called something like "moving wind." Apparently, if you are doing it right, you are gonna pass gas.

I was so desperate at that point. I had been in so much pain I was in tears. To make matters worse, I had company. Someone had come to visit for a couple of days. Even though they knew I might not be my "best," they were OK with it. But, given how I was feeling, the person questioned whether we should go to the ER. I was adamant; I wasn't going to go to the ER for gas.

The center even told me I should go because I mentioned shoulder pain. There was a concern for my heart. I insisted I had had this pain before, and that it had gone away, and I was fine. I did not have the same concern they did. It kind of bothered me that that was their reaction. I suppose it needs to be, but they scared me once before needlessly, and I am wary of letting them do that to me again. I do not take an ER/Hospital visit lightly.

I had hoped that me and the person who was visiting could go and at least see a movie. I cannot even tell you the last time I saw a movie in the movie theatre. But we barely left the house. The person told me it was "OK," but I said it wasn't. I was hoping for a bit of normalcy for a day, or two. Instead I got more of the same, just with different company than usual.

It sucked.

Right now a lot of things suck. One of those things is at least one part of my scan. While there is improvement in several areas, there is a "mixed" result, which focuses mainly on my liver.

Previously I did not want to know what the scan results were, for fear that it would make me fearful. For some reason, I decided to look this time. The best I can figure is that by knowing it is the liver that is having issues, I can focus on working on it. Some believe the mind and the body are connected. Chinese medicine relates the liver with anger. I figure I might just have anger issues that need to be addressed/released...or something - especially when it comes to certain people in my life.

I am not exactly sure what to do about it, but I figure I need to try. After all, anger just never goes away just because we want it to. Logic never really combats it, or even really addresses or heals it. Even though, there are those who will certainly try that route.

As I am sitting here, typing, my shoulders are hurting so much. I am leaning against the back of the chair, and it seems to be helping, a bit. I really am contemplating going to sleep. It is early-ish for that, but I feel like it would be a really good idea. I have been thinking about trying to get up in the really early morning, even before sunrise. I find that part of the day so incredibly peaceful. I noted that to a friend recently. I suspect it is because of the fact that I pick up so much energy from others, and in the wee-morning hours, many haven't even awakened yet.

I don't know if I can do it, really - especially when I get treatments. It is sometimes almost impossible to get out of bed. But the only chance I would have is if I go to sleep earlier than I do. The other piece is actually sleeping. Some nights that is almost impossible.

Last night I tried something new to help me sleep. If I could remember what it was called, I would share it with you. But I don't. Maybe at some point I can post it in case it could be helpful for another. It seemed that it worked fairly well,  even when I had to get up in the middle of the night. I was able to fall back to sleep fairly easily, even though getting back to sleep can be troublesome at times.

Today I tried to give myself something of a break from "everything." It didn't exactly turn out that way. It is really hard to do that when there is so much pending that still needs to be addressed with chemo breathing down my neck.

I definitely think I am stressed, stretched, and perhaps even a bit depressed. I am really having a hard time doing pretty much anything. I can't tell you how much that sucks. Like my visitor, some would say, "it's OK," but you know what? It really is not.

I really need a break. I really need to get out of Survival Mode. It is hard to "heal" and "survive" simultaneously. I don't know that many really appreciate, or understand that.

I have been wanting to post about my desire to take another trip this fall. I have been hesitant to, as I know that many took my last trip the wrong way. I haven't wanted to say anything until I could say it PERFECTLY. The problem is, I am not sure that any approach will be perfect, despite any effort I might make. And the longer I don't address it, the harder it in some way becomes because I am acutely concerned about how what I say will be addressed.

I try not to care so much about what people think. I am much better than I used to be, but I am hardly as good at it as I would like to be. It is a mixed thing to be so aware of what others think. I can try to address concerns, but the one thing I have noticed is that no matter how much I might try to do that, if someone wants to think something different than what I am saying, there is nothing I can say that will cause them to think/believe otherwise.

It kinda is a no win proposition.

But the longer I don't say anything, the more frustrated I get. I feel like I need to say stuff, but when I don't, my body nags me. Maybe it has something to do with my anger stuff, and/or how I have been feeling, who knows?

So...while I should likely do a separate blog post, I think I am going to at least take a first step here and now.  I very much want to do a "Living Life Tour" Take 2. I am not really sure where I want to go this time. Instead of just heading west, and then north, I am thinking maybe I would go coast to coast and back again. Or maybe I would just see where the road took me once I got on it. So many wonderful things came out of listening to my intuition the last time.

Because of this, I don't have specifics. I would like to be on the road for a month, though. I found that to be a great amount of time that allowed for a lot of flexibility. It also helped me clear my head. Physically I also got better while I was away. My tumor marker was lower. I felt amazing. It was great to be away from my worries for a while.

The trip, though, was NOT a vacation. It also was NOT about me "finding myself." It was not a "bucket list" item. It was about me LIVING LIFE in the midst of cancer news that was devastating.

Yes. I had always wanted to take a trip like that, but the trip really wasn't much more than me getting in the car and driving every day, and talking to people along the way. Many told me about touristy things I could do, but I did not have the funds to be a tourist in "that" sense.

I had a card that talked about ovarian cancer symptoms, and I shared about my story. Others I spoke to shared theirs. I received many hugs and many prayers along the way. I did my radio show once a week, and I also blogged and took pictures and posted videos. I did a lot of "work" along the way because I felt like the trip was about something much bigger than myself.

I know of a couple of people who were inspired and touched by what I was doing, and what I was going through. I even found myself crying at one point, as a person shared about their experience of my experience. I was touched by the fact that they were so touched. So many times I feel like no one is paying attention to what I say or do. Even though I felt it bigger than me, that was the first moment it was clear that I might just be right.

So the trip was about me, AND it was also about others. There is so much we don't say, even though we want to, and we need to. I think the approach that I took, and would take, helps others to share their stories and express themselves.

I am wondering if there might be a way to include a piece for my artist self along the way. Not sure how that will work, though, and time would certainly be a consideration, as well as energy.

There is a lot I haven't figured out, but the skeleton is there. I also know that since I am planning for the fall it gives me some time to try to find some sponsors for the trip. Since I have done "this" before, I am hoping that I can show potential sponsors what might be possible.

I had concerns about my energy last time, and I have similar ones now, maybe even more so, as I wasn't on chemo back then for several months. It is not the same this time. But I don't want that to stop me.

Just like previously, this feels really important. I really felt that I needed to go on that trip. I felt like my life depended on it. I am not sure I am "there" this time, but that feeling of "importance" is certainly present, and I am hoping that I will find people who will see the value in what I am doing, and what I have done - enough, so that they are inspired to help me create whatever comes next.

More when I have it. Feel free to contact me if you have any thoughts on how I might find some sponsors.

Thanks.


No comments:

Post a Comment