What Would You Do?

What would you do if someone you cared about was dealing with cancer, and was financially strapped, and running out of money?

What would you do if that person was you?

Keep in mind that there are relative few organizations that actually financially help an individual. Also keep in mind that Disability is a bear to get, and in some cases a burden to have.

Imagine you have products you could sell - provided you could find an audience. But it often seems people avoid you, quite possibly because they're avoiding "cancer."

Imagine the discomfort many have around the word "Money."

Imagine the potential skepticism of those who think any plea is a scam.

Imagine many imagining that others will help, so why should they?

Imagine some judging your need to not be as great as you say.

Imagine others need "help," too, so they're reluctant to help in any way - even though even $1 would count.

Imagine you've asked, and even literally begged, for help for months already.

Imagine there have been those who say they will help, but never deliver. How can you ask for a "gift" when they just proceed to ignore you or the fact that they ever offered anything.

Imagine how difficult it is to be in treatment, and barely able to get out of bed most days.

Imagine that very few understand the nature of what you are dealing with, and more often than not if there is help, it only comes when you are at your worst.

Imagine even those closest to you uncomfortable asking for help on your behalf.

Imagine spectators watching, and occasionally cheerleading, telling you to fight...

Imagine having uncertainty about where you might be living, having an inability to make an income, not having a job, no one to lean on financially, no partner for support, no kids, and no incredible story to market to the masses, having bills to pay, food to buy, and needing to survive, but feeling helpless to do so.

What in the world would you do?

I have tried so many different things, and I am running out of energy, ideas and even hope. Everyone tells me I gotta have hope. I gotta fight.

For what?

I am really scared by the way things are looking. There have been times I have just thought to give up. I don't even have to do anything to end it all; cancer would take care of it for me.

I can't handle all of the many aspects of survival simultaneously. I just can't. I get badgered by people who mean well. I sleep a lot. I try to do what I can to "advertise" and support myself. I ask for help.

If I could at least stop worrying about money, I could focus what energy I have on doing what I can to get better in other ways. The stress can not be helping.

I have tried over and over and over andover  with 250+ videos and over 1000 blog entries and posts and pictures to convey my situation in a way that others might have compassion and help. I often feel that I am "marketing my illness," but not, apparently very well.

How would you feel if you had to "market" your illness to survive?

I never wanted to be so public. Never. Ever. Every step has been awkward, uncomfortable, sometimes misunderstood and/or misjudged. 

Many will never say anything publicly for concern for these types if ramifications. I imagine some are fairly desperate, too, but there are others who may have family or friends or a community of great support and willingness to help. Unfortunately, I don't. Unfortunately I need to ask for the kindness of strangers, and hope they have a part if them that can identify with some part if who I am, or my need.

Believe me when I say I would so rather not ask. If I stop asking, one of two things is most likely to have occurred: by some miracle, I got a large influx of money that allows me to, or two, I have given up.

I feel like I walk dangerously close to the line, but I really hope it can ultimately be the former, and not the latter.

If you can help in any way, please do. If you are willing to ask for help on my behalf, even $1s can add up. I have Mp3s I sell, and prints, and can even offer myself as a hypnotist. I need help getting money, and I am not adverse to trying to find ways to make it.

I am also in the process of writing a book. Instead of writing here, I have been writing privately, and hope to have something to publish soon. If you could help me promote it and/or share about it, or would be interested in a copy, that would be good to know. I'd also be willing to talk to organizations and groups that might be willing to use my Cedonaah work for a fundraiser for themselves.

Please contact me if you can help in sny way. If you are willing to donate financially, or would like to see the work I sell, please go here:

http://anewme515.blogspot.com/2014/03/about-mehow-you-can-help.html?

I need to update it, as my situation had changed, and I am currently undergoing treatment with the intent to do surgery.

If you want to help, but need more info, please ask. Dealing with cancer is one of the worst things ever - on every and any level. I wish it on no one. At the same time, those who can avoid it, do, and so few truly understand how horrendous it really is.

Knowing all of this...what would you do?

Thank you for reading. 

The Experts - A Poem

The Experts will tell you 

where to pay 

your attention

They'll tell you when 

you are beyond all redemption

The experts will 

tell you what you need. 

Best to 

take heed.

$500? 

A bargain for their

$5k golden steed. 

Inflation of their price 

inflates your ego

Where do you 

go for answers?

Anywhere but within

There is cause for 

doubt 

fear 

concern

it is those things that 

has you in your life 

remain willing to listen 

to what others 

say they know 

instead of what 

you do 

know

feel 

believe. 

Scorned are those 

who dare to question 

and speak their mind. 

An independent 

thought becomes 

harder to find. 

Walking 

through the mind 

is a 

land 

often 

undefined. 

Others will tell you 

they know 

more and better

what you need. 

Is that

your 

chosen 

creed?

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.