What a week!

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What is needed right here is a big eyes-crossed emoticon. But I’m too tired to find one, so you will have to make it up in your head.

This has been one crazy week.

On the bad side, my neck/shoulder pain has continued. I finally was able to figure out that it happens whenever pressure is put anywhere in the neck/shoulder/back/front region, on either side, although the pain is only on my left side. You can pretty quickly deduce that this is a condition that does not allow much rest. Just leaning back on the couch triggers it, and lying down in any way or shape, on either side, or front of back, triggers it. If I find a position that puts less pressure in these areas, it seems to involve odd neck positions, and that triggers it too.

So here is what that has looked like. At night I go to sleep and within a few hours the pain has reached the point where I have to get out of bed. I may not necessarily wake up for this. One night I found myself sitting in the kitchen chair with no memory of how I got there. Other times I wake up for the initial leave of the bed, but wherever I wander, I keep dozing off, as in my head flops over, I walk a little unsteadily, shall we say. Sometimes I catch myself starting to fall off, whether I am standing or sitting. One of the things that helps the pain is standing in the shower, so I have done that a couple of times. Last night I kept catching myself falling asleep standing in the shower. With just a few hours of sleep at night, I have been exhausted in the daytime as well. With only one exception, I haven’t been able to take a nap because as soon as I lay down it starts hurting and I get up again.

Needless to say, I have not been very productive this week, with two exceptions. The first is that on Friday I actually made it to a coffee shop after radiation and wrote for awhile. This was not due to planning and discipline, but to a stroke of inspiration I had on the way to radiation. The last chapter of my book started falling into my lap, and I knew if I didn’t get it down I’d lose the heart of it. I wrote on my iPad rather than my laptop, since I had not planned for this, so it was awkward, and I didn’t complete the chapter. I need to work on it some more, but I have allowed myself to put it off a few days because I know I am so tired I could not do it justice. But I was happy to at least make a start on this promise to myself.

This week I also hosted my first dōTERRA online class. It is a week-long class with ten participants, and I have to say, it has been a lot of work, and I have been a little dazed and confused for part of it, but it has actually been fun. I have made some really fun mistakes, like the time that my computer continued broadcasting live for quite awhile after I thought it had been turned off. I still have not watched it to see just how badly I embarrassed myself, but I know I whipped my wig off and sat down at the computer, and that I caught on video my comment that I had just slathered myself in marijuana, referring to the anti-inflammatory cream I have with cannabis trichomes, which I used to try to stop the pain. Not available through dōTERRA, by the way! Didn’t work either, just as the oils I did try did not work, and the Motrin does not work, and the muscle relaxants prescribed by the doctor on Friday did not work. Well, the muscle relaxants enabled me to get a few hours more sleep than I have been, but they did not prevent me from waking up in pain.

Nevertheless, I have discovered that what those dōTERRA people say is true: I actually do love this stuff, and I do love sharing about it. And I do love the people I have been sharing with. Some I know, some I know only from Facebook, others I don’t really know at all. When I set up the class, I said I had room for ten people to participate, and these ten people asked to be included. They actually all seem to have been showing up for the classes, whether live or the recorded version available later. They have been wonderful and supportive and kind. They have told me I am beautiful, even though I can see the video broadcast of myself and I am horrified! They have told me that I am doing a great job, even though I find myself reading from a paper and still stumbling over the words, whether from exhaustion or natural lack of talent. But I have really appreciated their kindness. Really.

Other bad things have been happening in my body recently as well. Whether they are related to my pain I don’t know. But I have been puffy, like steroid puffy, even though I am no longer on steroids. My fingers have been swollen, and so have my feet and ankles. The neuropathy left from chemotherapy has been more pronounced. Here is where the dōTERRA did supply some relief from discomfort, as the area around my toes was numb and inflamed, and a good application of helichrysum and frankincense in fractionated coconut oil made them feel much better. The general inflammation, however, has been pronounced, and could well have something to do with the pain I have been experiencing.

I need a deeper change, however, and I know that. I have been eating terribly. I have been eating very unhealthy food in unhealthy amounts, and I feel awful. I know that I also need to take control of my diet and my life because of this disease. It seems as though every week I run into someone whose cancer had beat cancer once only to have it return a few years later. That second visit is generally a lot harder than the first. Often, in fact, it is fatal.

So I am back to my vegan diet, and I will let you know how that goes.

Spiritually it has been an interesting week as well. While I was experiencing discomfort during one of my radiation treatments, I closed my eyes and tried to go to that place where I danced with Jesus on the water. (For those who are new, this is an image my pastor gave me when I was first diagnosed, of Jesus reaching out to Peter and inviting him to walk on the water with him. I have visualized that during some of my more difficult times, only rather than walking I found myself dancing on the sparkling Sea of Galilee.) Only when I tried this time I couldn’t do it. I couldn’t get out of the boat, because I knew I would sink, because I knew I didn’t have the faith that would allow me to walk. So I sat in the boat, and Jesus came and sat right outside of it, both our arms resting on the side, and we talked. “Well, you can’t really blame me, can you?” I asked. I’m not sharing them again here, but I have my questions and Jesus knows what they are. I remember some years ago when I brought them up (again) to one of my pastors, he said,
“Sharon, do we have to dance this dance again?” And I guess we do. I am locked into it, seemingly for a lifetime. I spin and spin and become dizzy, and can no longer tell which way is home.

I have given God ways to free me from it so I can rest in his arms forever. “God, please just let me have one full night of pain-free sleep.” Such an easy thing for the creator of the universe, yes? No, I guess not. It probably wouldn’t work anyway. I would probably just say, well, I got better. It was time, and my body healed my injury. Why would God give me a chance to fail and go back on my word again? But okay, this hurts and I’m tired.

I do see another doctor on Monday. My radiation oncologist prescribed the muscle relaxer I started taking last night. So by process of elimination, by Monday we will be able to say say it’s not that, and move on, and hopefully find what it is and what needs to be done. Unless God or my body chooses to heal it first. Either way is fine. The faster way is better, whatever that is.

So that’s what’s up right now. Thank you all for your support! Love to all of you!

Radiation therapy is NOT fun

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I can’t believe I have completed six days of radiation therapy already. That means only 19 days to go. Last treatment is scheduled for September 12th. And I have done nothing that I wanted to do, like take my laptop and go to a coffee shop to write for awhile after therapy. There have been a lot of busy days, a lot of disorganized days, and a number of painful days, but one way or another it just hasn’t happened yet.

But I want to whine a little, even though I know I have no real grounds for whining. Radiation therapy is nowhere near as enjoyable as chemotherapy was. Now I know chemo can be hell for a lot of people, but it wasn’t for me. It was somewhere I went once a week to spend a few hours in a recliner reading, writing, chatting, while being taken care of by the nicest nurses. In contrast, radiation therapy is a rapidly moving assembly line. First, it is every single day. Each session lasts from 15 to 45 minutes depending on whether or not they want ex-rays (which they seem to have wanted more often than not). I not only don’t get a comfortable recliner, I get squished into a cardboard-like mold to hold me still in the most uncomfortable of positions. And I’m not allowed to move. If I wiggle my toes a voice comes through the speaker telling me to keep my foot still.

Note that part about the voice through the speaker. There are two techs who take care of me every day, but that consists of asking my birth date, then tugging me into position on the table while speaking to each other in numbers. “98.” “73.” My primary relationship in this therapy is with a large machine that rotates around me while I lie on a table.

Once I am squished into that position, suddenly I itch in all sorts of places. My wedding ring feels like it has slipped too far down on my finger and really needs to be moved NOW. I suddenly realized that my muscles had been tense, which had lifted my back slightly off the table when they positioned me, and now it really wants to relax. Then even though it’s an open machine, as the larger part revolves to where it is above me, there is a moment of claustrophobic panic. But most of all, it’s uncomfortable. Even though they presumably made this mold around my body the first time I went in, there are ridges where ridges should not be, and there are parts that were just never comfortable to begin with.

Perhaps coincidentally, I developed a pain in my left neck and shoulder around the fourth day of therapy. I will admit I don’t have a high tolerance for pain in the first place, but this is a very painful pain. Occasionally it has been painful enough that it has made me want to vomit. During the day it is somewhat relieved, and even occasionally subsides completely, with large doses of Motrin. But at night it always becomes severe, and is not relieved however much Motrin I take. I haven’t had a full night’s sleep for five days and it has gotten to the point where I am actually afraid to try to sleep, because I don’t want to wake up in pain.

Not due to the radiation, the techs told me. The area of pain is immediately above the area they irradiate but not within the field. But they suggested I tell the doctor when I see him on Friday anyway, which I will. It could be due to spending large amounts of time in unnatural and uncomfortable positions, they said. So maybe I can blame radiation. But on the other hand, it could also be from picking up my grandson wrong, or from sleeping in a strange position. Goodness knows I have tried to figure out how to improve my sleeping position, but that has been difficult considering the fact that moving even a fraction of an inch causes great, shooting pain. I have kind of self diagnosed it as maybe a pinched nerve in my neck, although the muscles were quite tender when my daughter tried to massage the area, and I’m not sure if that would happen with a pinched nerve. But whatever it is, it hurts, and I am tired of it, and when I lie there in those odd positions for radiation, my shoulder starts to hurt and I think, oh no, this is making it worse, but there is nothing I can do about it.

Then, too, I have thought about pain itself. I have thought about those I know who have died of cancer, who have reached excruciating levels of pain in the process of dying. And I think, I can’t even tolerate a little shoulder and neck pain.

So far I have been just as tired from radiation as from chemotherapy, even before the pain in my shoulder started robbing me of my sleep at night. I was taking three or four naps a day before I started being afraid to lie down.

But it’s just a really impersonal treatment. It’s annoying, uncomfortable, and lonely.

I guess it’s going to be up to me to transform the experience. Twenty percent of the treatments are finished now. I hope I don’t waste the rest of this time.