The Explosive Silence

It is barely past midnight, and I am laying in bed, sick to my stomach. My body, which barely felt like cancer only days ago; now feels so ill from the treatment that is supposed to ultimately help me.

I have had entirely too many ginger ales and am not eating well, as I can barely stand the idea of eating. Tonight I drank something called Recharge. It is a drink that helps with electrolytes. At about $3 per bottle it is bit of a hefty investment for someone teetering on the financial edge.

I was running out of money before embarking on this chemo adventure a second time, and now I hold my breath as I spend the funds necessary to get to treatment, and supplement treatment so that I do not have issues like Neuropathy - which is significant, and potentially severe, nerve damage.

On a more minor scale, I run the risk of being hairless once again. It almost seems like no big deal now, compared to the other possibilities, including hearing loss.

For two years now I have been sharing about my experience. The Good. The Bad. The Ugly. 

There likely seems to be much more of the latter two thirds than the first third, given the way my life has deteriorated. I do not have resources available to help. Many cancer organizations do not help the individuals affected by cancer. Look it up for yourself, and you will see.

Combine that with the fact that many organizations that help those with cancer have specific parameters defined by type of cancer, age, sex of patient, where the person lives, and the seemingly abundant options for help are nearly non-existent.

Add to the mix the fact that someone doesn't fit the pre-described societal mould, and there is no safety net of help and support. It is one thing to have a big, supportive family - whether blood related or community related through a job, or through one's kids. 

It is another to have a family unable to help financially, and often more challenging than helpful. Just because someone is related, it does not mean they know any better how to cope with the mess that cancer brings on. It does not have magical abilities to build where there is little or nothing.

I have worked for myself for years. That leaves me outside of any perceived benefit of a work environment and co-workers. If I had only known about cancer insurance, or had gotten a large life insurance policy, I might not be standing where I am now. I learned about options only after they no longer were available to me.

Poor management? Hard to know what you don't know until you don't know it and are at its mercy. It is so easy to judge standing outside the situation.

I never wanted to be so open about my life and circumstances. Pre-cancer you would never have heard me talk about the things I do, or talk in the way I do. 

Privacy was very important to me. So many times I cringe being as open as I am. And as open as I am, for some it would seem it is not enough. I, of course, am meant to understand why people expect what they do from me.

Perhaps I do. But that does not mean I am OK with it. 

In the last couple of weeks I broke down in a big way. I got to a point that I scared the person I was with. I could barely breathe, and I was coughing a lot, and probably cried the better part of 3 hours.

I am terrified when I allow myself to acknowledge that fact. Absolutely terrified.

My life is certainly one consideration. But so is the quality of the life I have left. 

As a child, I used to wonder what life would be like without a sense. If I couldn't have one, which one would it be? I do not think I was ever willing to forfeit hearing. If anything, my guess would be that it was sense of smell. 

I am such a sensual person, and the idea of not being able to communicate with people audibly bothers me so much, and the idea that I could not hear the voice of someone I love devastates me at the core.

Can it be it would be no "big" deal? Can it be that life itself is worth the potential risk/trade-off? I do not know how anyone could really know that.

I am terrified that there is no easy solution right now, and that the path seems riddled with land mines. Life. At what cost?

I started chemo on Friday, and I have barely made it out of bed. Initially I was going to share what was going in because I hadn't at this early point the first go round. 

Add to that fact that I still desperately need help, and I was reluctant to go/remain silent. Even at the times I make the most noise, the amount of assistance I receive has been minimal.

Yes. It has been enough to get me to this point, but I have a bigger journey to take at this point, and I have no idea how I am going to make it. A part of me questions my choice to do chemo, and I am definitely second-guessing my decision. 

It is not like taking a cold medicine and waking up fine in the morning. Instead, it would be like taking one only to find oneself in some way permanently incapacitated in the morning.

Such big questions I am asking at the moment. I had kind of decided to pull back, and be publicly silent, and write the book I know I am meant to write. And yet, here I am, writing publicly and openly about where I am. 

Why do I want people to know? Do I need my pain witnessed? Do I need the help so desperately? Is it more of a release for me? If money did not matter, how would that change anything, if anything?

If money did not matter, I think I would travel and go live life. I think I would do all I could to fully live, and if cancer came along, so be it. Living a life feeling this miserable feels like death to me. A big cloud showed up when chemo did, and I do not know how to cope with the heaviness - despite the myriad of things I have tried to do to help myself in other ways.

On some level, I wonder who might bother to read these words. I also wonder who will not only read them, but in some way feel affected. I wonder who will not only feel affected, but be willing to act on another's behalf - or even on my behalf.

Another part of me just doesn't give a damn. I am tired. I really am exhausted. I do not know how I can traverse this path, as depleted as I am.

It is not that no one cares, or that no one helps, but in the midst of the drop off, it surely feels that way as people stand around feeling helpless to help. 

It doesn't elude me that there may be some "lesson" in this for me, but you try to be burning up in a fire and be enthusiastic - or even mindful - of a potential, freaking lesson.

It does not work.

I do not know who this post is for. I need help. It is the song I have been singing for months. While some offer alternative treatments, many cost money and/or do not work in conjunction with chemo. As much as I appreciate them, it isn't helpful at this point unless it is free or I have some access to them through someone's generosity.

I need financial help more than anything. It sucks to say, and it sucks even more for it to be my reality. Every $1 helps.I have said it many times, and I mean it. I wish there was a way to convey how much it really means. It is kind of like those few raindrops in the dry desert. 

They matter.

What you can do matters. It sometimes pisses me off when people say they can't help. More often than not, it is likely they just don't want to, or can't be bothered, or somehow judge their effort as insignificant. Of course, though, I am supposed to smile, and be Ok with it, and understand.

I do, but I don't. This experience has forever changed me and how I interact with those who have a need - whether I can understand or appreciate it, or not.

It is the worst feeling in the world to know what is possible, and feel it slipping away.

S & S (Struggling & Sleepy)

Well. It took everything I had, but I went downstairs to get something to eat. When you are weak and nauseous the last thing you want to do is cook anything.

I stood by the counter, and took things slowly, as I nibbled on pretzels and ginger cookies and drank ginger ale while I brought out some chicken broth and some rice. I was going to do an egg, but just didn't feel up to it.

It seemed easier to just dump some rice into the boiling broth. As I think about it, it probably wasn't a good assessment to make. The egg would have even been quicker.

Oh well. On top of everything else, my head feels fogged. I can't imagine my diet of the last few days is helping much.

I am back in bed. Probably will try to sleep here soon. 

The good news in all of this is that my sourdough starter survived its refrigerator slumber of a couple of weeks. I was so happy to see it alive.

I just put it back to sleep, possibly for another couple of weeks. It will depend on when I next need bread combined with an ability to make it. The way I am eating it currently, that might be a good couple of weeks.

My eyes are wanting to shut, but before they do, I am going to get up one last time to brush my teeth. I so do not want to.

My eyes closed. I stopped moving.

I could so easily fall asleep. 

***

An hour later, I discovered I did just that.

Nausea Remedies? 5/24

Who has some natural remedies for nausea? I had it handled last time with chemo with the use of a Sea Band. It was amazing. My first chemo had me in bed and sleeping for 2 days, as the nausea was horrible. I ate nothing, so there was nothing to throw up. A week later I had received a Sea Band, and had a totally different experience. I asked the docs if they did anything differently, and they said no. To me that meant it was thanks to the Sea Band, and we never parted company again whole I was being treated.

This time I am concerned how things are going. I do not remember Day 1 feeling like this. I can't help but wonder about the adamant reaction of those who "know" that this chemo will cause nausea could be affecting me. I am working on trying to separate myself from their beliefs and expectations while trying to find something that will help me in case of need.

I got two medicines today that would help with the feeling. The problem is that the side effects are atrocious. I can't help but wonder if they could make things worse.

I need natural remedies - like the Sea Band - that won't interfere with the chemo. If I am gonna do it, then I gotta do it.

Anyone have any affordable suggestions? I am already looking at hypnosis and visualizations. Drinking Ginger Ale, and eating pretzels. Those last two may not be the best options, but oh what a relief they seem to bring. I also have some ginger candy. I wish I could tolerate ginger more on its own, but my taste buds do not handle it very well.

Please let me know what'ja got. I have 5 more sessions to go before I am scanned again. That is about 9 weeks of interacting with this. It could be a very long couple of months. I have to be careful, too, as looking at surgery means I can't be weak.

I still can't believe chemo is advised before such a strenous surgery. 

I am nervous. And I am trying to not be. It is not the easiest thing to deal with. All of these paradoxes SUCK.

The overwhelming need to close my eyes and want to sleep in random moments is also back in full force. And now I am feeling rather awake. I will take a Melatonin (20 mg) shortly. Maybe it will help me get to sleep again.

Oh what fun.

Please share any suggestions/thoughts/aides - especially free or inexpensive ones.

Thank you.

Chemo Begins - 5/24

So. I started chemo today. But I cried first. I went into an individual bathroom and video chat with a friend. I was bending down in front of the sink. Certainly was not an ideal scenario. Could also almost certainly be one for a sitcom - especially if the person was a germiphobe.

It has been a challenging day, and as already varied from my other chemo experience, but not necessarily in good ways.

I have been thinking I need to write my book. I have also been thinking that it might be hard to do, as active as this blog is. What if I diverted the meatier content to the book? What if I offered access to a different blog for a subscription fee? Even $5 or $10 per month would help me tremendously to get through this year. 

The problem is I have no way to set it up without it potentially costing more than what I make. At least to start. It is not much, but it is everything when you feel like you have nothing.

Such decisions to make. Such paths to take.

I also checked my bank account. $900. That is it, or was it, as I had to spend nearly $100 on much needed supplements which will in part help protect me from, or minimize the effects of, Neuropathy - or nerve damage.

I was also told about a $150 anti-nausea pill. Previously it was given intravenously. Now it is an extended release pill you are supposed to take for 3 days.

Well. That just ain't gonna happen.

Other options? Yes. But more annoying in implementation, and still a prescription. Hoping and praying the Sea Band does its trick. Cost: $30 plus the hassle of having to pick it up with potentially not feeling well - and even nauseous.

I also have my monthly health insurance premium coming up, and other expenses, like something as insignificant as food. Maybe I won't want to eat. Some might think losing a few pounds could be a good thing.

Not so much. If I lose weight via nausea or not eating, I am losing muscle. The docs won't want me in that shape for surgery. I am going to have to be pretty careful how I do this, if that starts to happen.

I still need help, now more than ever. I have been told one of the two chemos will not be a good friend. I can barely function today, and am typing with one eye closed. If this didn't feel so urgent, I might likely try to sleep.

I think a part of me does not want to. If I stay awake, can I pretend I am Ok, at least a little while longer? Can staying awake minimize chemo's ugly side effects?

Of course not. But don't tell me that. It is not anything I want to know, or acknowledge - kinda like the somewhat willful ignorance I have of my situation from a medical perspective and the gamble I am taking, as well all treatment medications I do not have to actively pursue.

I did not want to be here - but I now am. A part of me is in acceptance. Another part is potentially resigned, in denial. I am still working this out.

I would appreciate you joining me. What do you think? Would you be willing to donate $5 per month for private access to my world via blog and/or book? Was thinking of taking the recipe booklet approach. I would lib out drafts: Imperfect, unorganized, maybe rambling and confusing drafts. You could see me give birth to it, and continue to sculpt it. 

I would ask that you consider a year's commitment. After a year, even if you do not continue, I will still share the final version with you via electronic copy.

I really wonder if this is a good idea. The fact is, I don't know. I am soooo tired, and need to try to get some rest and be up again in a few hours.

What do you think? Are you willing to leap for me? It would mean so much to me, and I would love that it would hopefully mean something to you, too.

Would you be willing to share about this? If so, please do. Please.

Feel free to ask any questions you need that can help provide what is necessary for you to take the leap of trust.

Thanks.

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Day 2/3 - from midnight last night

Earlier I could not keep my eyes open. It took a lot to get up the steps to bed. Woke up a bit ago feeling nauseous. Had some ginger ale and pretzels. It seemed to help. Someone commented on an earlier post that smaller meals and frequent eating seemed to help. I have kind of noticed that for myself. Although I am reluctant to eat much of anything that isn't bread or ginger at the moment. I did have some chicken and veggie with my soup earlier when I thought I might be doing better. Every hour that passes without me throwing up I am grateful for. I am even more grateful for hours that don't hint at it.

Day 3 - post on Facebook from earlier today

Feeling like crap. Was awake a bit last night, feeling incredibly nauseous. This really sucks. I am second-guessing myself right now, and I am only a few days into this. I remember the oncologist's dismay that I would not just get on chemo just to stay alive. This does not feel like life. I can barely function. I am going to do all I can to create a miracle in the next 9 weeks. This has to be over quickly. No promises were made to me about surgery - only chemo first, then we will see. As far as I am concerned, I say chemo, and then miracle. No sign of cancer. Feel free to send all good thoughts of love and healing my way. All Reiki appreciated. At the moment I just do not know how I will get through this.

Day 3: Ugh Feeling Like Crap

Yes. I know. I am supposed to be in a different headspace. I am supposed to be positive. Be with God. Prayerful. Mindful. Optimistic. A Fighter. Blah. Blah. Blah.

When you feel as crappy as I do, those words all sound wonderful, but you are wrapped in a shroud of uckiness. And this is just Day 3 of what could be 9+ weeks according to the docs. If scans in 9, or so weeks do not show what they them to, then it could mean more chemotherapy before surgery could be considered.

They gave me two prescriptions for nausea. They were so damn insistent that I would have it. Why? Why inflict that on someone? There has to be a better way. I cannot help but wonder how much of what I feel has to do with their damn insistence.

Nausea isn't the only thing I feel. My head doesn't feel right, and there is overall a depressed feeling. I also want to sleep a lot. I felt healthier a mere few days ago than I do now. Now I want to ignore how I feel, but it does not seem to be an option. I can't do too much without having to do something to cope with the nausea.

I am not eating particularly well. Ginger Snaps, Pretzels, and Ginger Ale is the main part of my diet. Yesterday I did have some plain homemade chicken broth/soup. Today I might try to add an egg for protein. I also have some homemade sourdough bread that was baked and frozen before ai went off to my friend's.

I also tried putting peppermint oil on my wrist as I tried to sleep last night. I guess it helped, as I think I fell asleep that way. At the moment I am sucking on a Gin Gin Ginger candy.

It is interesting for me to share what I am going through now, as I do not think I did the first time round. I was barely posting back then. I also wasn't posting publicly as me. It took some time before I started to tell people and go public. I had to cope with it myself first.

I do not want to be so public now. But the part of me that demands I share is quite compelling. I had to write what I have been writing the last few days - most of which has been on Facebook only. I really should write here, and link there - but the extra energy isn't something I have wanted to expend. I wonder who reads what more? 

I just went back and copied the posts to here. They are out of sequence, but at least they are present in the blog now. Some people think I can't be so bad if I can write and do the things I do. I wish I knew how to convey how difficult it is to do what is done. Sometimes it takes all I got. Other times I just have to do it. It is the only thing I've got.

As I write, I am noticing tingles on my scalp, and hair that is coming out. It could still be Ok. I was pretty devastated last time, this time I do not think I will be. At least I still have the wigs, and I know more of what I can do for myself and my appearance, but I will not be happy. 

I am really hoping that by writing this stuff I will get it out of me. I keep thinking I really need to write the book I know I need to write. I keep wondering if I can post blogs and write the book at the same time. I am not sure that it is feasible. 

When I think about it, though, I worry because I very much still need help, and if I fall mostly silent, people may not think about me. Even when I make noise, it seems to have minimal effect. All of the things I worried about before have come. I now have more expenses, due to treatment and supplements, and that is with running out of money.

Every day I have had people telling me what to do - things that mostly cost money, and are often out of alignment with chemo. I was trying Mistletoe treatments before, but was told I would likely be miserable doing them in conjunction with chemo now, I had stopped, due to the cost. Apparently now, though, I would possibly get them for free. Sucky timing.

I feel a smidge better writing. But I also want to retreat, and cry.

Homeward Bound

A few things are on my mind. Today as I was coming back from my friend's, I found myself again telling people what I have been dealing with. I am not sure why, but it felt like the "right" thing to do at the time. My self-imposed no conversation about cancer seemed to have been lifted. I imagine a part of it comes from the fact that my vacation from me is now over and I need to get back to the realities of my life.

To say that I am less than thrilled is quite the understatement. The first people I told was a couple. They told me to "stay positive" and acknowledged me for what is perceived as my strength. 

As always, I appreciated it, but think they probably have no clue of the dilemmas I am facing. I had no desire to really delve into it, although I did try to say something. It is really hard for me to leave it alone when I think people really have little to no clue. I feel like I am supposed to say something.

Am I right? Who the heck knows?

Then, later in the day, I was sitting, charging my phone, when someone came over and asked if she could share the outlet. The obnoxious me said, "No," but with the broadest grin.

I wound up telling her stuff, too. I also complimented her on her earrings, and she GAVE them to me!! I had no idea why the offer, but she gave them to me without hesitation. (It also had nothing to do with what I told her, as what I said came afterward.)

A few minutes later she found out she needed to be elsewhere, and she was off almost as quickly as she came, but only after she took a moment and asked to pray with/for me. 

She felt like an angel to me. She was incredibly sweet. And the earrings? They have butterflies on them. Metamorphosis. Right before I start treatment again. 

If there are angels and signs, I would have zero problems saying I met an angel today and got quite the sign. At the time I was pretty calm, and even though I am tired right now, I am feeling mostly OK about what is coming.

I spent some time unpacking tonight, and find that my clothes smell like my friend's apartment. It is a wonderful association that I appreciate having. I plan to take a few things when I go for chemo that I relate to good feelings and people and thoughts.

Vulnerability

Vulnerability sucks. I have been greatly challenged for a while now in this regard.

I have spent most of my life having to be strong. It is something that society also says is necessary: a stiff upper lip, never appear weak, what would others really think of you if you were honest?

It really helps when you feel like you have nothing left to lose. There is nothing to protect, nothing to hold on to. 

Despite this fact, though, I have found it very difficult at times to be the jumbled self that I am. I have found it difficult to be OK with breaking down - in the midst of breaking down. 

The protective veneers have all but disappeared. I can no longer act like I am OK when I am anything but. Holding myself in has become a difficult - if impossible - task. 

I have broken down way too many times in way too many places. At least that is what my logic says. It is a breakdown of my ego that is less than desirable.

I have to hold it together. At least that is what my ego says/thinks.

It is a battle that it is losing though. It may even be lost. I just can't contain myself any more.

Sometimes, though, I get some help. The friend I am staying with has been amazing, encouraging me to be who and how I am - without restriction.

I have gotten to the point that I feel I can say anything, and feel like it has been such a great gift I have been given. I do not need to edit anything. I do not need to filter anything. I do not have to fear repercussions. 

I. Can. Simply. Be. 

I can simply be me.

Opportunity or Sign?

So much of life is imperfect. Really what it is is not what you want it to be.

I am thinking about this, as I just stepped into something that made me very uncomfortable. On some level I wondered if it was a sign. On another level I see it as a potential opportunity. On another level I am annoyed. 

It is a mish-mash of feelings that I am uncertain about what to do about. Life is about all kinds of opportunities for growth and understanding. It is about making choices with what is behind them what you deem is important.

Are the things really important? Are they the things that deserve to make or break someone or something?

These are the kinds of things on my mind as I try to figure some things out. How do you know when something is a sign vs an opportunity?

They could be two very different things, resulting in very different choices and outcomes.

When you love someone I think it makes a world of difference. It makes you want to see things as an opportunity more often than not. I think it makes it difficult to see signs.

What just happened has never happened to me before. I hope it never happens again. I dealt with it, though, and will likely interact with it more before it is done. I know I am not finished with it yet.

I am really sad right now for what brought things to the point that they became what is. I feel let down. The thing is, the let down only comes from the lack of fulfillment of my desires and expectations of another.  We all have them, spoken or unspoken, realistic or reasonable - or not.

I think most would think them reasonable, but that isn't the point. I was thinking earlier about how people talk about who "deserves" your love, who "deserves" to be loved. 

Who are we to make that kind of judgment? The answer is that everyone deserves love and to be loved. What they may not deserve is how one might express oneself. Actions and definitions are sometimes collapsed and confused. One does not necessarily equate to the other.

In the same way, who are we to demand that another be the way we think they aught to be? If we are disappointed, it is our own damn fault.

Opportunity or Sign?

That is the question.

Just Elizabeth

I wrote a poem last night. It was the longest I think I have ever written. Although I am not sure how much *I* wrote. It seemed to have written itself.

It came from the place within me that is all confused. It is the place both resignation and optimism live. It is the place of hope and heartbreak.

It speaks deeply and completely to the struggle I face. I wanted it to be positive, hopeful, but in the midst was the pain. They had to co-exist in the body of the work.

They co-exist in the body of me.

Like a horse race, one occasionally leads, and sometimes the feelings go neck in neck. 

At the moment I am feeling down. It is happening too much lately. My struggles can be ignored and put off and ignorance can be bliss for a time, but time is closing in on reality.

It is coming for a visit, and I do not feel ready. I am feeling very much on shaky ground. I had hoped visiting my friend would help, but instead it has only become another thing to interact with - and even a diversion of sorts.

This is is not to say that it hasn't - on some level - been wonderful. Maybe the diversion has been necessary.

I haven't found myself taking many pictures, and my conversations haven't raised the topic of cancer. I realized that I am exhausted about talking about it. In some ways, I would rather be "normal" for awhile. The "crusade" is on hiatus.

It isn't what I imagined happening, but then again, I really wasn't sure what would happen. I just wanted a change of scenery, and I got it.

I also have my privacy in that people know nothing about me, my journey, my ordeal. I am able to pull in. For someone who never wanted to be so open, speaking up and out has been exhausting. 

But I have had to. My survival has seemed to depend upon it. 

I cannot tell you how much of a relief it has been to just be Elizabeth, not Elizabeth Informer or Elizabeth Educator or Elizabeth Inspiration or Courageous Elizabeth or Artistic Elizabeth or any other modifier Elizabeth.

Just Elizabeth.

Just pulled in, quiet, pensive, appreciative Elizabeth who has no desire to connect with strangers, just with herself.

I think part of the anxiety I have about my return is the feeling that I will again need to return to any or all of those versions of myself sooner than I want to.

When I was initially diagnosed and dealt with treatment, it was mostly in silence and privacy. I wasn't public about who I was here in this blog for a bit. 

I needed that. I could also afford to be that way. I had money in the bank. 

Now, not so much. The bit of an influx I had a few weeks ago will be gone shortly, and I will find myself without funds and likely feeling the effects of chemo.

On top of that, I will need to buy supplements to take. Really not sure where that money will come from. But they are needed to help minimize the undesirable chemo effects and maximize the desirable ones. 

I hadn't been thinking about that til now. I feel so heavy, down, depressed.

How in the world can I make it?

I need help. I so do not even want to mention it. But I have to. I have to until I either get a large enough chunk so I do not have to worry month-to-month and/or Disability finally shows up.

You likely have no idea how much I hate to ask, or how utterly physically and emotionally exhausting it is. If you can help, even with just $1 or a few, I cannot tell you how much I would appreciate it.

You also likely have no idea how much I would like to crawl into a cave and not come out for several months. Dealing with this was so much easier when I was "on the other side" and when I thought I was emerging from what I have been through. That lasted a whole couple of months.

Ugh.

Ugh.

Ugh.

I wish I could just run away.

Opportunities to help here (and other things) http://anewme515.blogspot.com/2014/03/about-mehow-you-can-help.html

Anniversary

May 14 is my anniversary. It is 2 years since I was diagnosed. 

TWO years.

I suppose I should be grateful. Some never survive even half as long. I am sure there are some who will read this, and think just that.

Grateful.

It is not that I am ungrateful. There is so much that has happened in the last two years that was unimaginable a short 2 years plus one day ago. 

But with the "good" has come heartache unlike any other. As much pain, disappointment, confusion that I have felt over my life, it pales in comparison to knowing about my mortality.

I want the blissful ignorance of not knowing back. The problem is it is gone, and can never return.

Yesterday I saw something about "when life gives you cancer." I thought about it, and switched the words around - "when cancer gives you life."

The thing is, though, that life is so many things. It is pain and sadness joy and love. It is anticipation, and it is disappointment. It is desire and it is heartbreak.

Living and experiencing and feeling life isn't just about the good stuff. It is about all stuff.

Some of my best life experiences have come from times the ending wasn't only uncertain, but if there was any certainty, it was certain for disappointment.

I willingly walked in the path. I did not want to. I did not want to experience the pain. But to refuse the potential pain would be to refuse the moments of bliss. There was no way to have one without the other.

My head gets this. It all makes some sort of sense. It sounds good, too, doesn't it?

Despite knowing these things, and despite being grateful for all of it, and especially grateful for the good, there are times my heart aches and my heart breaks.

Many times.

It breaks in my desperation to have something in my life that at least appears permanent, something that is an enduring support. Something that has the illusion of certainty.

We all know nothing is for sure. We all know there is nothing definite. We just walk around with a veil on. We see life through a distortion. We act as though that distortion is real, and yet it is no more real than anything else.

A part of me would love to be that ignorant again. A part of me is grateful for the clarity. But there is a problem, and it seems rather large and looming. How do I take the learning and the realizations that come with it and live in the world without the comfort of the delusions? 

Much of my life has sucked. I look back and it makes me really sad, especially when I wonder if I will ever be able to have things I have thought I could have. I get especially sad feeling like I can't plan my life, and that I am mainly just existing now.

It is no life.

I get really jealous when people talk about their plans for the future. When they talk about finding someone to spend their life with. 

They still have the veil in place. They can do that. They are blissfully ignorant of the impact of the next moment or of tomorrow because they can be. Nothing has jarred them out of it, and if they are lucky - nothing ever will.

Some might say I live more fully now, and at times I might even be one of the some. There is an urgency unlike any other that comes at a time like this. When you can't depend on a tomorrow you do all you can in today.

It is a form of currency with a greater value in the moment than comes with time. And yet we have been trained to believe that value lives in a never-ending number of tomorrows.

We make plans with those we believe will be in our life at some future point, and any potential uncertainty is just pushed aside - if even considered at all.

What is even harder still about the veil lift is interacting with those who still have theirs. In some ways I am an express train, while others are leisurely making their choices. In other ways, I am the one paying much more attention in the moment, while others are going through life looking at it through the blur out the window, not realizing what they are missing.

Either way, though, we are in very different places, with very different perspectives and resulting realities. We might be on the same track, but more often than not, it is a different train. We only connect - if we do - because we have some illusion of a shared experience.

I am sitting here, wanting to cry, wanting to be numb. I have cried so much in the last week. The terror I feel on every level is tangibly present. Every disappointment of my life is in my face, with the potential reality that my end could be closer than I would like it to be.

I struggle to be at peace within the beauty that shows up in the moment with everything else lurking in the background.

I feel angry about what is - even the good stuff. It is like a Grand Tease. See what you can't have? It just taunts. It gives me a taste. It takes me down a path. It gives, and then it steals it away. 

I try my best to be OK with things. I try my best to not be a victim in how I relate to my life. I was there many times in my life, and it is miserable.

But the thing is, I AM angry. Why? Why the hell am I led down paths like this over and over and over? Some might say it is because I have made poor choices. The fact is that in many ways I believe my life has been enriched by it all. I believe there could have been a reason and purpose for things to have been the way they have been.

It doesn't stop the feeling of torture, though. It doesn't have me wanting something else with a lesser potential for pain.

I once heard we couldn't be given the desire for something we could not have come true. I think it is bullsh*t. Do you know how many desires have been left unfulfilled?

Some would give reasons for that, many of which would call my conscious and unconscious into question. I think there is something inherently wrong about that approach, as it seems awfully cruel to me for us to be set up in that way, for there to be something we don't know we don't know, and therefore can't access.

I think explanations like that only serve the illusion that we can "fix" anything and everything. Any other thought can leave us feeling vulnerable and helpless. However the alternative has the potential to make us question ourselves and feel inadequate.

Every day I struggle. Every day I toggle between being OK-ish and losing it all together.

Someone told me I need professional help. A professional has nothing that can help me find answers. That is what I really need. 

I sobbed the other day because there is no one anywhere that can tell me what I need to hear. There is no one who has any answers for my soul. There is no psychiatrist who can help me deal with the gut-retching pain of my spirit.

At times the most healing, helpful thing for me are the least rational. They are times my tears reveal the tears in my psychic self. 

Some people never talk about what they are dealing with, and for them, a professional might be the only one that is a witness for them and their pain. As for me, I have my expression. I have my releases. I find experiences with professionals to be of limited - if any - help.

Sometimes the only way to heal and deal with pain is to go through it. I would so much rather go around or over or under it, but it seems there is a much greater wisdom that has me sail through it.

There are times, though, I feel as though I may capsize and drown. There are times I can barely breathe. There are times I am gasping for air. There are times I am shaking and coughing out what I did not intend to take in. There are times all I can do is what I am doing. Times I am afraid, and am exhausted, wondering if it might just be best to give in and give up.

And while this is a great metaphor, I do not just mean this in a metaphorical sense. There are times I am literally, physically gasping. 

The other night when I could not stop crying, I felt like I might have been crying a lifetime of tears, feeling a lifetime of pain.

More than once in my life someone has told me they are amazed by my story. They are amazed by everything I have been through. Even more than that, they are amazed by who I am in spite of it all.

I had to suck it up so many times in my life. I never really got to be a kid. At a young age I was taking care of my grandparents: cooking, cleaning, washing, grocery shopping. I had to be an adult long before my age proclaimed me as one.

I was often scared about what would happen to me if something happened to them. I never really felt sure footed. I lost my grandmother when I was in 10th grade. My aunt stepped in, but I was a great deal on my own at that point. I only went to college because I filed all the applications myself and sought loans and financial aide to get there. There was no one forcing me, or compelling me, or badgering me or caring about how well I did or did not do. It was just me, myself, and I with help occasionally from my aunt.

My life has been nothing like anyone else's I know. I have moved around countless times. I have had a countless number of jobs, at one point, even 4 at once. I have worked for myself. I have been in an abusive relationship. I have been abused as a child by my stepfather. I have gotten to travel more than most I know. 

There are so many labels I could wear. There is so much many never could or would understand. In many ways, it is the long list of things that are me in conjunction with the sum total if my experiences that leaves me in some way depleted, and at times feeling defeated. 

It is like standing there with an armful of rocks, and someone comes along with a boulder and tells you to hold it, too. Many would not be able to withstand the strain. 

That is kind of how I feel now.

It takes everything I got some days not to collapse under the strain. Some days I do collapse, and then it takes everything I got to stand up again. 

I get fearful I one day may not be able to get up again. Even worse, I get fearful I won't even want to try.

Most days I am aware of the feeling that life is going in one direction - and it is not the one I want. There is good in my life. There are times I feel very blessed by who and what shows up. There have been some very amazing people and things.

I wish I could live only in the good...but it is the "bad" that has me appreciate the things I appreciate all the more. 

As you can see, I go back and forth between seeing the

good in the bad, and being potentially buried by the bad. There are times I feel greatly empowered and strong by the same things that could, and sometimes do, destroy me.

I have thought more than once about how the oncologist was trying to tell me about the power of my mindset. He is a new one for me. He has no clue about me, my background, where I have been. A part of me gets angry at his denial of my fears and concerns, his overriding of where I am. I get where he is, and where he would like to see me be. But that doesn't mean that is where I can so easily be just because it seems to make sense on some level. Tell me just how easy it would be for anyone to stand where I stand, and handle it the way others think you should.

Words are sometimes all too easily said. 

I am exhausted.

Dealing with cancer - and the resulting circumstances - is like trying to do a full time job with the flu. It doesn't really work out very well. I have been trying to give myself something of a reprieve, but it doesn't help that major concerns loom around the corner.

Yeah. I know. I said I was about living more in the present, and that ain't exactly the present. Well, I never said I was perfect, and I am all too human. Several times daily I am reminded of that fact.

Inspiration

I often see the word "inspiration" bantered about. I started to wonder what an "inspiration" really was. I looked the word up and it talks about being "mentally stimulated" to do something. What I find interesting about that is that there is no action that has to take place as a result. If it is a mental process, it may never come to any physical fruition. Inspiration, as a result, could be a quite passive thing that doesn't wind up doing much more than sound good.

I have wondered why I don't feel great when people call me an "inspiration." I think it is because many times I suspect that nothing really changes as a result of what they see in me. It just sounds and feels good to think that somehow there is an impact. There may be a "feel good" desire to be different or do things differently, but I suspect the ball often gets dropped.

As I thought about writing this blog post, I wondered how critical I would sound. Would I sound judgmental? Would I put people on the defense?

Here's the thing, though. I know all too well where many others may stand, because I have stood there myself. I have stood in the world seeing things that sounded good. I have stood in the world feeling that I should be different, or do things differently. I have stood in a world in my head that never materialized in how my life looked.

I suppose one could call that projection. Perhaps I am projecting the me I used to be on others, and think that because that is who and how I was, then that is who and how others are. In some cases, that might just be the case, as I have no real way of knowing if anything changes. All I have are my perceptions, and we all know how often they can be wrong.

So much of this experience is lived in isolation. Even if I am impacting others by what I share, many will never let me know. It is not that anyone has to, by the way. It is just that it is difficult to be on the receiving end of something that is meant as an acknowledgment without any real proof to show for it.

This isn't really about me needing proof, nor is it about whether or not I am inspiration. We live in a world of "don't ask, don't tell." We like our illusions, thank you very much. We like to live in a bubble. We do it so much that we don't allow ourselves to really see things as they are within ourselves or in relation to others. And it does us such an incredible disservice.

I cannot tell you how much freedom I feel these days that I never used to have. It has been quite a process getting here, too. Someone I was talking to recently says she sees in me things she wants for herself, but doesn't know how to get "here." She wonders how to do that.

She wasn't really asking me, but I am sure I said something about it.

People may look at me and think this is how I have always been, and nothing is farther from the truth. It is a place I could never have imagined being. If you had told me 2 years ago that I would be sitting where I am sitting in relation to myself and life, I would have been flabbergasted. How in the world could that possibly happen?

What happened was life. What happened was me interacting with the things that came along that forced, coerced, coaxed me into this place. I could have made other choices than I did, but it was too uncomfortable not to change.

It wasn't some 5 Step program. It wasn't a matter of well-meaning, ultimately meaningless exercises. It was fully, completely being in my life in the moment. It was feeling the pain. It was willing to make mistakes. It was making mistakes. It was acceptance of the fact that many people and many things were not, and often could not, be what I wanted them to be. It was pissing people off. It was learning to listen to MYSELF without condition. It was learning to speak up and out for myself. Learning when to walk away from things. Learning that I would survive in the midst of the judgments of others, as long as deep down I felt that I was doing what was right for me.

As often is the case, I started with one thing, and have come to another. I think they are tied, though. Perhaps inspiration as a mental process never translates to inspiration as a physical one because of things like what I listed in the previous paragraph. We get caught in the inner battle that is waged when who we are and desire to be is at odds what we think we should be.

Have you ever thought about the fact that most shoulds are probably not things you really believe? Maybe you "should" eat better. Do you really believe that? Or is that your doctor or family or society talking? If you really felt you should eat differently, odds are you would. There can be unconscious things at work that have you eating as you do, and causing things that might not be in your best interest. At the same time, perhaps you are learning something as you do, or don't do what you do, and when the time is right for you, you will make the switch.

I go back to a previous blog post about how we might do things a disservice by labeling them bad and trying to get rid of them. Maybe you or your life is a mess. Maybe there is a reason it is that way. The only reason I can see things as I do now is because of where I have been.

I think we are sometimes so determined to have answers and results that we miss the point of life. It is something that is organic, and ever changing, and any perception to the contrary is just a momentary illusion.

In some ways, that sucks. In other ways, it is probably one of the best things that life has to offer in the possibilities that it may present. Most days I have opportunities to remind myself of this fact. There are times it would be all too easy to fall into the trap of the struggle and the seeming decline of my life and health.

As I say this, it occurs to me that I may be an inspiration to myself, and in a way that presents itself in active ways in my life. It is my willingness to go the places I go and experience the things I experience that allows me to build upon what has come before, and it is what has built the layers that brought me to this place. It gives me confidence in the face of uncertainty when everything else might be telling me something else.

Toward the end of last year I was considering HIPEC. I didn't know at the time that chemo would be required first. I thought about rushing into it before my insurance changed, uncertain as to whether or not I would be able to have surgery at my preferred provider. In the end, I felt I should wait. I knew the risks, on several levels, but I decided that it would all work out one way or another, and I would deal with it.

There had been a question about where I would be going for treatment since my insurance changed. It was one of the big concerns I had about moving forward. Finding another provider and doctor and what it involved was not anything I really wanted to do, and on top of that I might have had to rush to handle things.

Well. I got good news in the last few days. I have been told that I no longer have to worry about that. I can rest assured that I can continue treatment where I want to go, and have surgery where I want to have surgery. I cannot tell you what a relief that was (and is). More than once I noted how much lighter my body felt after I found that out. It had a much greater unconscious weight than I knew.

I share this, in part, because I just wanted to, but I also share it as something that tells me that listening pays off. So many things and people were saying otherwise late last year. Maybe I could have been farther along that path now if I had done it. At the same time, I have had experienced life in a whole different way these last several months than I would have if I had done things the way everyone else wanted me to. I have no doubt I did the right thing for me.

More than once I have thought about walking away from the doctors and medicine. I was at one time a big fat no about the surgery. But things change, especially when you allow yourself to be in the moment and act upon what shows up in that moment.

A part of me is very much at peace about surgery and chemo right now. It is my head that remembers all of the pain and fears and issues of last time that is screaming, "what the hell are you thinking about doing? are you crazy?!" I have a feeling I am headed in that direction. I will know soon enough if I am right.

As often is the case, I share a lot of what I do so I remember it. I also never mind when it might give another something to consider. Much of what I am doing is thinking out loud. It is often dangerous territory to be in, as you never know how it might come across.

But I think it is interesting when we don't put up the filters and defenses. I think there is a lot of value in allowing the truest self to be expressed. I have found it is a way to connect to another like no other. It also occurs to me that a great deal of my growth and ability to be who I am now has come through those moments when someone can identify with what I say, and validate me and my experience. And you can't get that when you are trying to be some other person or act some other way.

Interestingly, "inspire" also means to take in air. Anyone alive does just that. It isn't anything conscious or that takes any real effort, though. Actually LIVING life takes much more than just a passive process. It means jumping into all kinds of things that may be less than desirable. It means loving in the face of potential loss or pain. It means trusting even when the outcome might not be what you want. It means all kinds of things you probably don't want it to mean.

It means listening to the only person that really matters - YOU.

I would love to end this right there. But I feel I need to say something about that statement. So many would say it was selfish and self-centered to be that way, and it would be a bad thing. It would also be a way for another to possibly manipulate out of you what they want, or a way that you could do that to another.

The fact is, it is self-centered, and probably even selfish. It is about you first. The fact is, it should be. The more you evolve around self, the more you have a core to function from, the less wobbly you are. The more you know what is the right thing to do, not only for you, but ultimately for anyone else involved.

If you have lived any length of time in this world, that is not going to be an easy thing to break out of. Those around you know you all too well. They know what buttons to push. People won't like you breaking out of this silent oath many of us have taken to be someone we're not. Most of us haven't been trained to be who we are. We haven't been trained to speak our minds, to be true to ourselves.

I sometimes think people are jealous of where I am. It's ironic, given cancer is in my equation. But it is cancer that helped to bring me to this point. It is what in many ways precipitated the circumstances that compelled me to be me. I doubt those who might be jealous would want my full equation.

The fact is, anyone can have what I seem to have. They just have to be willing to do one of the hardest things they may ever have to do - be true to themselves. And when that happens, they will likely see that the truest inspiration lies within.

There is nothing outside of us that we do not have within. Being faced with cancer has shown me with absolute certainty that there are things that no one really knows or has the answers to, so I have stopped asking and stopped looking. I may still look at things and I may still ask things, but it is more for the benefit of the only thing that may have a shot of knowing anything of real value for me, and that is MY inner knowing.

There is so much more to this conversation, and I feel like I am about to go off on another tangent so I think I will stop for now. As with anything, there are so many threads that come together, and it is never easy to speak of one element in isolation - at least not accurately or comprehensively. As you can likely tell, though, I certainly do try to cover my bases.

I can't tell you how many people have told me I should have been a lawyer! LOL.

PS I need help. Please take a look at this page, and see if there might be some way you could assist, or if there is something that would be of interest to you. Thanks.