Wednesday, May 28, 2014

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.

No comments:

Post a Comment