The Power of Prayer

Some may question whether there is power in prayer. I know I would like to think there is.

On my journey, many people have offered their prayerful support, which I have greatly appreciated. I have always believed that if someone wanted to wish me well, there was absolutely zero reason not to take it.

I have had people tell me they are not believers in God, but in my case, they would reconsider their position, and put in their request to support me and my well being.

I felt that much of the reason I came back to relatively good news was all of the wonderful energy I met on the road, I am now back in my daily life, and the energy is different. I am not out meeting people every day, and when I am it is a challenge to reach out when I don't feel well.

Daily life with considerations and issues is a lot different than a life on the road going from Point A to Point B. I have been trying to maintain as much as I can from the road, but it is different.

If you are reading this, I would appreciate your good thoughts of my good health. If you pray, your prayers are appreciated. If  you have a community of those who would pray for me, I would be appreciative of that, as well.  

I feel like I have more to do before I leave this place, and I really hope to have that opportunity, but there are times I get scared I may not.

Thanks for whatever good you may be able to contribute on my behalf.

*UGH*

When I got the "bad" news back in early October,  decided not to do the Avastin treatment. I wanted to be as clear as I could be for what came next. My last treatment had been 3 weeks before, and the longer I travelled, the better I felt.

I had forgotten how Avastin makes me feel. In short, crappy. I don't like the way I feel, and even worse, I feel emotional, heavy, and depressed. Being that I was away from it, I am clearly seeing what it is doing to me, and it takes great, conscious effort to bring myself back from the edge. I was nearly in tears yesterday.

I suppose it could be a delayed reaction to the recent news, but I do not think so. I really think it is the Avastin.

How in the world did things get better on my trip, only to dive bomb in the last 3 weeks? I do not understand. I had hoped things were still in a good place, and even getting better.

It is taking all I have to be up, moving around, doing things. I would much rather be in bed, asleep. Last night I went out to celebrate my friend's new home, and I was feeling kinda out of it. I did not feel like myself. At some point I had the thought that unless people knew what was going on with me, they likely had no clue, which made me think about how many people we come into contact with every day that might be in a similar place. "cancer" looks like a lot more than people realize.

I am a lot less patient now. Perhaps saying I am impatient is more accurate. I had to deal with my health insurance today, and after a couple of hours it is still not resolved. It needs to be done by tomorrow, though, for me to have coverage January 1. 

And this is "just" Avastin affecting me. There is not much of a chance I will do chemo at this point. I can't. It will take me away from me even more. I really don't think people know what this stuff does.

I was revisiting today the alternative stuff I was doing. It is a minimum of $300 per month. I will be saving a bit of money when I change plans, so perhaps I can try to pick up on it again. But I was stressing before because I am still without an income. How can I make it? How?

This Avastin makes me feel beaten down. It makes me feel helpless. I am tired. It is hard to function. I have to survive, but I don't know how. I really wish I could get some breathing room. In January I am going to check on Disability. I can only hope that will come through. It would be a good cushion for me to have. Someone told me about a lawyer who can help. The only "problem" is that he gets a 1/3 cut. But if I don't get one, and the government doesn't do what they can on their own, 3/3s of nothing isn't terribly helpful.

A part of me didn't want to write, but another part wanted me to get stuff out. 

Outside I hear the machines and workers that were working on the roof today as I was trying to get stuff done. I am sure that didn't help in the least. What also didn't help were the "helpful" people who kept trying to tell me to go through the damn exchange. There is no subsidy for someone with no income. All there is is Medicaid. And even after I told someone that I can't be treated where I want to with Medicaid, she still wasted my time trying to convince me to check ot out/sign up for it. Why does it seem that people don't freaking listen sometimes?

I am not feeling too great, and I think I am going to go to sleep. It isn't even 6:00 yet, but my eyes just want to close. On top of everything else, my head has been hurting on and off today. 

Not in the best place or mood, can you tell?

Empathy and Sympathy and Brene Brown (Video)

Wow.

I just saw this video, with audio from Brene Brown, and boy, do I have to say thank you to her for putting labels on things and expressing them in a way that I can relate to - and can now share. Many of the things she is saying I have tried to address in the last year and a half, but I didn't have the distinctions that she has created.

I didn't realize that what I have been doing is seeking EMPATHY because more times than not I am getting SYMPATHY from those who interact with me. The way she explains it, I am not sure anyone would want sympathy from anyone else. My guess is that most would rather have empathy because within in there is a relatedness, a connection. Another guess is that because many do not know any better, sympathy is mistaken for something that should feel like empathy, but is so no where near.

I also didn't realize that by experiencing what I have, I have become much more empathic when it comes to others. I consciously choose to interact the way that she describes as empathic because I know how it feels to be the recipient of some of what I sometimes call "cheerleading."

I am not really a fan of labels or boxes, but...sometimes it seems they can really be helpful in explaining something in a way that can be valuable. Being the recipient of the attention of others, I have often felt that I have the possibility of being judged if I don't appear grateful for what often amounts to sympathy (at least by Brene's definition).

If you go by Brene's definition, it is very difficult to be grateful for what is often offered me. I realize that people have good intentions, but the thing is that those good intentions can often rub me the wrong way when I am in my darkest, most desperate places. Those good intentions don't give me what I need, but empathy likely would come a lot closer.

If you can make the time to watch this short video, I think it will be worth your time, and has a good shot at offering you some powerful perspective. If you watch, see if you can relate it to how you relate to others who are coping with stressful and seemingly frustrating and impossible situations. Are you being empathic or sympathetic? And which do you think you'd rather be the recipient of? Has anyone ever reacted negatively to your sympathy? Perhaps this will help you better understand why that was the case.



Thanks so much Brene Brown!

An Unexpected Calm

I am sitting here, fiddling. Fiddling like I do when I start to zone out, but not enough to get up and go to bed. It seems as though I am perhaps meant to write this while it is still quasi on my mind. Maybe. At least that is what I will tell myself as I slightly trance-like stare at the screen while I type.

Today was such a mixed bag. As I said earlier, it was going to be my last visit at this particular facility. Well, as it turns out, I may have one more. It may take as much as a month after my new insurance is registered with them to get me moved over. As a result, I am not able to get my next Avastin treatment at the new place when I am supposed to, in about three weeks.

I was saying many good byes today. Now it seems it may be a long good bye. I feel like I am losing some friends. Some said it was more like I was gaining some new ones. Perhaps I would feel more that way if I had contact with those I know there outside of the environment. Maybe after today I will, who knows?

More than one person said something to me about "knowing you," I would find a way to make this transition into something great. It was something I was even considering on my own. Maybe there are people I need to meet elsewhere that I won't get to meet any other way. It sure seems like a pretty sizable inconvenience, but I have to believe it is in some way not only worth it, but necessary.

I also met some very wonderful people. It is always what happens when I speak to those around me. I was giving out the postcard that I created for the event I recently attended. While it is a marketing/advertising piece, it is also a piece of art with a beautiful message, so I was leaving a "piece of me" with those I have enjoyed knowing there.

Then there was the "BIG" thing: my tumor marker.

I had hoped, given the way I felt, that the news was going to be good. In the back of my mind, I wondered if it might not be as good as I might hope for, but I certainly wasn't feeling like it would be "bad."

Well. I was not exactly right. I saw the oncologist without knowing the marker reading, and we spoke a bit about what the possibilities would be, depending on what the number was. I had an expectation that it would be good, although, interestingly, when they drew blood through my port, I had them leave the access in - just in case I was going to get Avastin. I truly did not anticipate getting it, though.

But then, I was told that the number was not only higher, it was outside of the "normal" range. I was so sure I wasn't going to get the treatment that I did not know how to respond. I basically said I wanted to go to my other appointments, consider it, and then decide.

I started to feel like I would do it, but I wanted to percolate on it just a bit. By the time I was done, I felt OK about the treatment. I wasn't anxious. It didn't upset me. My body felt like it would be OK, and because it felt that way, I decided to proceed.

It is only a 30-minute treatment, but it took forever for them to get what they needed to get things going. Then, about 20 minutes into it, the nurse handed me paperwork that included my blood work. I went to look at the tumor marker section and was shocked to see a different tumor marker number - for breast cancer! It was a little high outside of normal, too.

What the heck?!

I immediately called the nurse. I asked if she could pause the treatment. I wanted to know what the CA-125 number was, not the one listed. And did the one listed mean something to me? Did it mean something about breast cancer? Was it a mistake? Was it supposed to be someone else's blood work? I was confused. I was also hopeful. Was it possible I could have a lower number than previously thought? Is it possible I was getting the treatment for no reason?

I looked online and saw that the marker listed can sometimes be affected by someone who is dealing with ovarian cancer. When someone came to explain things to me I was told that both markers have to do with hormones, and that if one was elevated, the other one likely was, too. I was offered the CA-125 number tomorrow. But I wanted it, like everything else, today. I had made a decision for treatment based on information that was potentially inaccurate, and I wanted to know if I should continue.

It was supposed to take half an hour to find out. I think it wound up being much longer. I say "think" because I really did not notice the time. It just kept getting later and later.

At some point the nurse returned, and told me the number. I think it was 29.something (about 10 below what I was told it was with the other marker reading). It is the highest it has been since my hysterectomy. Back in July it was 24.something. It has been fairly constant, and in two months it barely budged - even as I travelled and was off treatment. But in the last month alone it jumped about 10 points.

I decided to finish the treatment. I wasn't particularly happy about it, but it felt "OK" to my body to do. It would be inconvenient with a pending move, and with how it zaps me of energy, but it did feel like the right thing to do at that moment. I had gone there pretty much absolutely certain I would not go back on it, but given how OK it all felt, the change of course felt like the right thing to do.

It is one thing I definitely learned on my trip. One moment I would think and plan something, only to have it uprooted by what came in the next moment. I have learned that it is quite possibly unlikely that the something I think I know in this moment will be what I will choose in the future and it has made it a lot easier for me to roll with the changes and unexpected glitches.

I have to say that for as much as it made me a bit emotional and upset, I was mostly calm today. I even took the mistake in markers mostly in stride. It felt pretty empowering to ask the questions I did, and to make the decisions I made - not on a doctor's stern suggestion and say-so, but from a place within myself. It was a place that I even felt peaceful about, even as I wasn't exactly happy about the choice I was making.

It was kind of surreal really. I feel like I could have, perhaps, should have, been more upset. More worried. More concerned. More, oh no! But I wasn't there. I was just present, and I rolled with the "punches" that came my way.

Deep down inside of me I keep feeling like things are looking up, and looking good. In some way I am unable to fathom the news I got today. It wasn't "supposed" to go that way.

I posted on Facebook about what happened in very short form. I am so appreciative of the incredible support of those who posted a response. I normally wouldn't necessarily be as appreciative of "cheerleading" in the face of something that I felt devastated by. But the thing is, I did not feel devastated. This feels like a bump, and it feels to me like the things people are saying fit me and what is going on right now. At the moment, what could potentially at another time be seen as "cheerleading" feels more like validation for me.

I feel like I can be here for a good long while. That feeling at times feels so strong. I suppose it could be wrong, but it just feels so right, I can't even imagine it being wrong.

If this is a test, I so want to pass. If this is a test, I am wondering if I already have.

I am sticking my tongue out at you cancer with my fingers in my ears and my other fingers waving. My body and me, we have no time, nor desire, for you. Thank you for your contribution to the cause. Now please just be on your way. I want to be here. I need to be here. I need to be heard. I need to do so many things before I leave this place. Please understand that you just need to go now to make room for the person who is healthy and capable of being all that she is meant to be in the world touching, and being touched by, others.

Na, Na, Na, Na. Despite everything I am still here and I have lasted this long. You've done your job, and I am truer to myself than I have ever been. I have said things I would have never said before. I have taken risks I would never have taken. I have been a person I never imagined being. Everything you tried to do to stop me has failed. Your attempts were valiant. They were bold. They caught my attention, my time, my energies.

What you did worked. I say thank you with a smile. I appreciate life more than ever. I am more alive than ever.

Please just go now.

Pretty please, with sugar on top?

(We all know how much you just love sugar!)

Thank you.

On My Way to the Oncologist

This morning I am pretty tired. Can you tell?  (I look at this picture, and I can!) I did not go to sleep until late, and then I did not sleep very well. I said yesterday that I was feeling calm-ish about everything. Given how I slept (rather, barely slept) last night, I am wondering if I am doing as well as I thought I was.

A part of me is anxious and sad as this will be my last time at this treatment facility, thanks to having to change my health insurance starting next month. Obama had told insurance companies and states that they had the option to keep plans for a year. Not surprisingly, when I asked my insurance company about it, I was told they did not opt for that option. Apparently, the If You Like it You Can Keep It amendment never got very far. I heard it was not likely to go for a vote in the other house, and even if it did, Obama would not have signed it.

Reluctantly, and without a choice, I am making a change. It won't be a comfortable one for several reasons, but for several other reasons I feel like it is the best choice for me to make for myself at this moment in time. I had held off as long as I could, hoping for a miracle, but if I do not sign up by December 20, I will not be covered until February 1. Quite frankly, I have wondered if I should gamble, and be without insurance for a month, and save myself a bit of money. But then I would be possibly penny wise, pound foolish, if there turns out to be a reason I really need it.

But what is the alternative? Chemo. Surgery. Nothing.There really are not many medical options for me at this point. And none of them tell me the cancer will be taken care of. The first go-round everyone acted like the chemo would work. And it did - for a short time, or so it seemed. But now, it is a different story, and not one medically that seems to have a good conclusion.

I have even wondered what would happen if I took out the port and walked away from the medical all together. If things are going to take a certain course, why make things worse by the medical play-by-play? And if they're not going to take that "certain" course, then what do I need them for any way?

I feel fairly calm. That comes from not "knowing" anything terrible. I think about the visit I had in the beginning of October, and it was devastating. I try to remember how I felt going to that appointment, but I can't. I remember how I felt before the first spots showed up post treatment, and it was like I knew something was up. I could feel something was off/"wrong."

Today, despite being tired, I feel like it will be OK. I really hope I am right about that. I have seen more than one person in my Facebook timeline talking about good news in relation to their cancer situations. I would love to add mine to the mix. Even when I wonder if I will be the exception, a part of me says it will all be OK. I so want to trust my feelings and gut, so I really hope I wind up having "proof" that I am right to listen because it is accurate.

It was a great deal of what my trip was about, and I am striving to keep it as an active part of my life. It hasn't been all that easy, but I just keep reminding myself how calm and clear I feel when I am listening. I strongly suspect that the times we are the most anxious and confused are the times we are logically at odds with our intuition, and often times we say we don't know something when we actually do, but are unwilling or fearful to act on what we know. And we say we don't know because we have cleverly blocked ourselves from seeing the thing we know, so it really doesn't seem to be an option. 

It is like looking for a hat in a box, we pick up everything around it, but none of it is a hat. We even pick up the hat at some point, but see it as something else, so we keep looking because it either doesn't look like what we think it should, or we just can't figure out that what we are looking at is what we have been wanting or needing. 

So how much do we know that we don't know we know?

(It is now the end of the day. I never really "finished" writing this entry earlier. At this point, I will declare this one complete, and move on to what happened today)

Feeling Calm-ish (and thoughtful)

Feeling calm-ish about seeing the doctor this week. Kinda like how I felt before. The thing is, just like last time, I am hoping that the news suits the calmness and certainty I feel. I have been doing the best I can to continue to listen to the things I am being told. I am feeling guided, and really hope that the path is the one I consciously want to be on.

I am ever mindful that there are times that desire does not seem to match the reality that comes about. In speaking with Oceana recently, it seems that there could be a "script" that life follows that can be so much better and more purposeful than what we think we want or want to create or have in mind. It could very well be "this" all was meant to happen - that it all serves a purpose.

I am so much more me now than I have ever been, and it is because of what has happened since being diagnosed. I am not really one who likes the "whole" cancer is a gift thing, but it could certainly come across that way. What I am grateful for is that with all that has transpired some pretty amazing things have as well. I hope to be here a while to enjoy them. But, if not, I am grateful for what has been able to be created.

I feel like there is a lot of work and talking yet to be done. So many people do not know what the cancer experience is like. I am sure I am not alone in many of my issues and dilemmas. When I speak I feel like I am speaking on behalf of those who feel they can't speak, or do not feel like they want to.

I really don't like calling attention to my situation, and yet, if I don't, who will? It is a tightrope that I walk, and most would willingly assume that all must be well with me if I look and sound well. I don't blame them. It is a much more comfortable place to be than one that doesn't know what to say, and one that is worried about me, and is fearful about what cancer might do.

There may even be some who would say that it is in my best interest to NOT think about it. I don't think it is possible. Don't think about the Pink Elephant. Kinda impossible. Living with a diagnosis of cancer is very different than living without one. Once it is in the equation, it isn't easily removed - if it can be removed at all.

It is my desire to remove the disabling discomfort that people feel so that interacting with cancer is something that is possible, just like most anything else that is a part of life. I am often told I talk about things differently than most. For whatever that adds to the conversation, I am grateful.

I am grateful, too, for those of you who have helped in the sharing of the conversation. One person in particular, Lynn, who has even taken it upon herself to distribute the ovarian cancer symptom cards that I created. I SOOO love that. It stirs up many things, not the least of which is a conversation about ovarian cancer. She is already having her own stories to share about the conversations that have come as a result.

Even still, perhaps the fact that it can not be removed is actually a GOOD thing, it just as of yet, hasn't been described and appreciated as such. As often is the case, I don't really know. I am just guessing. But I kind of like the way the guesses sound.

There is an expression what you resist persists. Maybe by wanting to be in denial of something that is so much a part of so many people's lives only in some way makes things a whole heck of a lot worse. What if instead of running in fear from a person affected, we ran toward them, embraced them, loved them, appreciated them, engaged them. What if instead of thinking of ourselves and our fears and our discomfort we thought about the person who needed the comfort of those in their lives? I am pretty sure it would be rewarding and fulfilling and would add something positive to the mix. There is a lot to be said for moments and connections like those.

This started out as a status update for Facebook, and the longer it got, the more I realized that it should be a blog entry. A lot is definitely on my mind these days. Can you tell?

Recipe (Tuna and Pasta)

Sharing what I came up with tonight because I want to know that it is somewhere that I can find it to stir my memory, should I need it. :)

One thing that I have enjoyed for a long time is pasta with mayo, tunafish, pasta, and tomato. Given that I am trying to be more mindful and aware of what I am eating, it is altering things.

In addition, I had a doctor tell me to stay away from nightshade veggies, of which tomato is one. I have been reluctant to stop eating them, but I have noticed lately that my stomach does not seem to handle peppers or tomatoes very well.

I have also been trying to be creative with avocados, as I have heard that they are a good "fat" substitute. I made honey mustard dressing recently with an avocado. It was quite yummy. 

I had a thought today to replace the mayo with an avocado. I wasn't sure if I'd like it, but I figured I wouldn't have much to lose by trying it. I mixed avocado with onion and fresh garlic and tunafish with a bit of lime juice. I then mixed in brown rice gluten free pasta and served it over a bed of fresh spinach. The raw, fresh onion and garlic was a bit much...but overall, I think I have a substitute I like.

It has been a long few days. I have been barely able to do much. I think I overdid it when I was gearing up for the recent event. At least that is what I am hoping is the case. I will be seeing the oncologist this week, and getting blood work. Fingers crossed all is still going in a positive direction.

--

Tonight I will be the interviewee for a change. Martine Joseph will be interviewing me. You can click here to join us (or listen at a later time). The show airs at 8:00 PM Eastern Time.

Tomorrow I will be interviewing Oceana LeBlanc on my World of Perspective Radio Show airing at 4:00 PM Eastern. I recently did a session with her, and think she is awesome. Perhaps you will, too.