All I Can Ever Ask

I have been sleeping a lot. The Vicoden has a tendency to knock me out. As opposed to not being able to sleep, I suppose it is in some, odd way preferable.

But the thing is...it is disorienting. I don't really know what time of day it is, other than when I look, but even then I might be surprised to see it is nine in the morning, but it feels like afternoon. 

This isn't just an occasional thing; this becoming the all too normal norm.  

On top of it all, I am taking Vicoden every 4 hours, or so. Oddly, if I fall asleep, I wind up waking up at just about that 4 hour mark. There are times before that mark I am uncomfortable, but I try to stretch it a bit, without winding up in the deep end of pain.

Tonight I would have loved chicken fingers for dinner. But I have run out. There are other things I have run out of, too, and really should get to the store. Being back on chemo is around the corner, and it will be good to have some pre-made food. 

It all sounds good, but making it happen - well, that will be the trick.

In between everything, I keep trying to tell   myself it will be ok. That I will be ok. It is not an easy conversation I have with myself. While Vicoden is helping with the pain, it is causing other issues, and I am concerned about it being paired with chemo.

A part of me, I think, is in denial. It is about the only way I think I can get through this right now. Even writing this, and admitting to it, is making me emotional.

At least, though, I had set out to raise $500 to try an alternative type of treatment that I will do in conjuction with chemo, and thankfully, the funds for this month were raised. I will need to do it two more months, at least, and am not looking forward to asking, but did see how asking gave me something I had all but given up on. So I will need to find whatever it takes in me to extend myself again closer to the time I will need it.

There are moments I am just so incredibly appreciative of those who step-up. It means so much to me when so many - the majority - just get silent. 

I am so grateful for these step-up people. I could never have made it this far without them. 

At the same time, I am terrified. I need help more than ever because I can't do as much as I was doing. If silence is golden in my times of need, what is going to happen if I get to a point that I can't take care of myself?

It is really hard to convey my situation, if I do not choose to speak of it certain ways. But it truly could be getting to a point of life and death, and that is why the alternative I mentioned above is so crucial. 

Will it save me? Who knows? But I have to at least try. But if things deteriorate, I am just not sure how much trying I will be willing to do. The pain more than sucks. Why I have the pain in the first place sucks even more.

It is very difficult to not be terrified in the midst of terror. I guess that is partly why I am writing what I am, in the hope that I can deal with it, release it...something, anything - other than letting it do what it has been doing - other than trying to bury it.

It really sucks that pretty much every freaking thing I do requires thought, and maybe even a bit of planning. Things you take for granted when healthy, become like a boulder to get around, over, or to be carried. Even standing up and walking often has to be contemplated.

Not sure why I am bothering to tell you these things. I suspect there is a diligent part of myself that really hopes that somewhere along the line people will have an "a-ha!" and suddenly I will be flooded with empathy and tangible help, instead of the words that mean nothing that so many offer that they somehow think help. 

I keep thinking somehow they have to know that posting some damn meme on Facebook about cancer often doesn't do a damn thing for someone dealing with it. But to admit it might mean having to admit to being helpless, or not knowing what to do, so it might be unlikely to be seen for the mostly ineffective thing it is.

Believe me, though, if you truly want to be a help, and not feel helpless, there are likely to be some tangible things you could do, if you just ask the person what s/he wants/needs. It may take more than a few strokes on a device, but will likely be infinitely more appreciated than a graphic or a few generic words.

In raising $500, one person alone asked 3 different people who did not know me if they'd help to the tune of $50 each. Her personal request got results. 

I know others have asked, only to be told no, or shot down. So I know it is no simple matter. I also know complete strangers have given me more than many who know me longer, better - many of which have given nothing. Nothing. Despite requests for even just $1.

I realize there are complex dynamics in situations like these, but really, they should be quite simple: a person needs help: help them. Of course, you may mot be able to do it every time, with every person, but I'd be willing to bet most people can do more than they do - especially if they're doing nothing. And it doesn't have to be a grand event. It might just be something small - but to the person in need it might just mean everything.

My current requests might just mean the difference between life and death, and I'd say that you can be more significant to a person than you may realize.

To those who have helped in any way, please know I thank you. I value any offering of any size. I think nothing less of a person who gives me $1 than a person who gives $100. I also do not think less of anyone who chooses to remain silent in regard to me/my situation/my requests. They have their reasons, just in the same way that someone who gives has theirs.

I feel the need to say this, as I am afraid I may in some way offend someone, or come off wrong in what I have said. As I acknowledged, things like this are complex, and I only say, and share, the stuff I do as perspective on a topic that is rarely ever addressed.

If you are doing what you can/the best you can - in relation to anyone - that is all I can ever ask.

Ps If you want to help me get a jumpstart on next month, you can at Heartsgiving.com  Thank you.

I miss "normal"

It's 4:44 am. I have been awake about 20 minutes. It has been a restless night. I was dreaming about having a "normal" head. What that means, exactly, I am not sure, but in the dream, I was feeling as "normal" as I might have years ago.

It has me thinking about the life I took for granted. The sunrises and sunsets I did not fully appreciate as I made my way to and from work. It has me thinking about the "busy-ness" of my life, having to think about what I would do for lunch, where I might stop for breakfast, the anxiety of potentially being late for work. It has me thinking about late Friday nights that led to Saturday morning sleep ins. It has me think about how wonderful it was to be paid. It has me think about the few times I got really sick and wound up on my butt, and how wonderful it was to feel better, although I never probably fully appreciated the "getting better" part.  

I am so tired of feeling sick. I am so tired of being tired. I woke up to discomfort, and the results of using MOM last night. I went from not going to the other extreme. 

I think I feel better now, but it's hard to tell. I took some more Vicodin. Vicodin has been my friend around the clock since it showed up, and is likely the reason for having to use MOM.

I saw people annoyed last night that they could not see the moon because of clouds. It must be nicer than they realize to be annoyed at something like that. 

People dealing with life and death issues were less likely to be among the annoyed. In my case, I looked, couldn't see it, and shrugged. There were other things to focus on/concern myself with. 

It might seem that I am judging them, but it is more that I am sharing a perspective. When you are caught up in living life a certain way, you don't always recognize the good stuff, and it is all too easy to complain about stuff not worth the effort.  

I miss having other things to focus on beside pain, going to the doctor/treatment, supplements/pills, going to bathroom, drinking enough, how I am going to eat, and sleeping.

A dream

I had a dream last night. My grandmother, who has been dead for years, was alive, but in a coma-like state, dying. My sister was sitting with her until I got there, and she left because "tomorrow is going to be a long day." The  implication was that my grandmother was going to die the next day.

When she left, my grandmother seemed to "wake up." It  it appeared to be a miracle. I had heard of people perking up before dying, and hoped that this was not that.

I was so happy she was alive.

I had other dreams, too, that I can't quite remember...just bits and bobs work their way through my consciousness.

My First Time Using a Trimmer

I got tired of my Heat Miser hair. For the first time ever, I used a trimmer. This was the result. You can't really tell, but there are many thinned areas on my head, so I won't be out in public like this for a while. The new chemo apparently doesn't have the hair loss side effect, so I guess my hair will grow back.

I look happier in this picture than I actually feel. It has been quite a day, and I have taken my first Vicoden. Oh. What. Fun. I was concerned about masking the pain, but apparently, if what I take stops working, that is the way the docs know things got worse. Lovely, ain't it?

My plan is to take as little as possible, as infrequently as possible. Just knowing I have it, though, I have to hope is a good thing. Other times I will be trying to use Ibuprofen, and hopefully that will help, too.

(For anyone who doesn't know...this is Heat Miser)

Going Through Stuff...

I am in pain. And not just physical. I wrote a letter to my mother last night that I will never send. 

There were moments I was acutely aware of irony as well as my lack of empathy and compassion. But I just did not give a fuck.

I allowed whatever came out, and a lot of it really surprised, even shocked, me. I had no idea of the crap that was inside of me after all of the years trying to moderate and cope with the issues that have arisen in relation to my mother and my life.

Our relationship has never been an easy one. Even times things seemed better were only preludes to my feeling worse. I suppose it could have something to do with the fact that things were never fully healed, maybe only partially, or at times the numbing strength was stronger.

I don't really know. It just seems to be the largest onion ever. 

I have wondered how much of this cancer dance has to do with my mother, and family. Much of my physical pain is near my belly button. Every time I consider her, the pain intensifies, and it is not limited to just her, either.

I am not sure about this cause and effect thing, but I am not sure I can discount it, either.

I am feeling emotional, angry...sad. Someone on Facebook spoke of an exercise in which they wrote a letter to someone, and then turned it around, writing their response.

I did not want to consider my mom's response. In my anger, she did not deserve a voice. She did not deserve compassion, understanding, empathy. She deserved nothing.

I also did not want to take away from what I was feeling by going to "her side." I have already done that too much, at the cost of not recognizing my own feelings.

I will not linger in this crap, and I will not re-bury it. It needs to be let go, and I will do just that, when the time is right.

A part of me wants to scream, "I fucking hate you..." and a lot more. I want to share it, but am acutely aware how public this post is. There is a reason I am not sending her that letter. I have felt a lot of ugly stuff. Heavy, dark stuff.

Stuff that is likely more about me than it is about her. She doesn't need to have written confirmation of how I feel. 

I have often told people I know how they feel about me, and they don't need words to confirm. Even though I wasn't conscious of this stuff, I wonder if she could feel my anger and disdain. It is apparent to me now that I apparently do not think much of my mother - at least when coming from the place the letter was written.

I am grateful that this stuff has come forward. I just wish it hadn't taken so long to get here. I wish I had a punching bag to beat the crap out of right now.

I share this to share my process, and what is going on with me. I am in awe of the flood of emotion that came pouring forth. I do not share this to have anyone give me her side, or have anyone try to fix me/things. If you are inclined that way, thank you, but please don't. I will get there when I get there.

I hate even saying this stuff, but if I don't, I think there is a good chance unsolicited, unwanted comments will show up, and I am just not "there" at the moment. 

People often think public sharing is an invitation for their opinion/input. Probably it's at least in part because we have people looking to "engage the readers." Articles and blogs often end with, "What do you think? Let us know."

Then there are those who see problems as things to fix. Why else would someone share their problem? And those who see fixing a problem as loving another.

It can be good stuff, but most likely it will do its best work when it is welcome. In this world, it often seems that the default is perceived to be "welcome." Maybe for some that works.

As for me, most of the time unsolicited help is not wanted, and often anything less than helpful.

Harsh words, perhaps. No one is supposed to say these things, even if they are "true." It just comes off bitchy and ungrateful and other delightful things.

Well. I am not meaning to be harsh. Just wanting to be clear that I am only sharing, and not looking for help. There is a big difference, and it would be great if we could be clear with each other, honest with each other, and not have it be looked at in a negative way.

Am I being defensive? Perhaps. But I also feel like I need to be right now. But I also think this is a conversation that is often so much easier to avoid. 

My guess is, though, that many more people would speak up and out if they felt it safe to do so. Unsolicited stuff often makes the idea feel most unsafe.

I Noticed Something...

WARNING: This post may be TMI for some. I recommend you only proceed  with an open mind. 

I noticed something about when I feel pain. If I can bring myself to an erotic place, and especially if I orgasm, the pain I feel is greatly minimized.

I figured it must have something to do with the hormones in one's body at times like that. Upon investigation, apparently it is a "known" thing, and has a lot to do with endorphins.

(I found this while looking https://www.sharecare.com/health/sex-orgasm/how-orgasm-help-relieve-pain)

It is a paradoxical place to be, feeling awful, and seeking pleasure. It certainly takes focus and concentration, as the pain is wanting to be known. But it can so be worth the effort.

It's too bad I can't walk around in a constant state of arousal :p Having said that, though, I can't help but wonder how this knowledge could be put to better use. It would seem to be a better/safer choice than many drugs.

I recently got a prescription for Vicoden, and to say I am less than thrilled is an understatement. But the pain has been more than I can deal with way too often. It can't do my body good to be almost constantly hurting.

Thank goodness the endorphins, and how they bring the closest thing to peace I get these days.  

Those we speak of

I just saw something that tells of criticism of Tracy Morgan for not being in touch with the family of a close friend who died in an accident he was in. The criticism extended to Tracy also not mentioning the friend, or his family, at the Emmys.

I have no idea why things have been the way they are, but I can't help but wonder, if Tracy was as close to the person as it seems/sounds, how difficult it must be to process his death - on top of every other traumatic thing he has had to deal with.

We all think our opinions and pains and perspectives are warranted. But when we judge another without knowing the depth of their experience, I suspect there is a good chance we may be dealing more with our own selves than those we speak of.