Wishing on a Blue Star (50 page)

And right now, as I grow physically weaker and less able to defend myself, to defend my way of life and how I choose to live it, what I fear most are the very people who have been so generous and helpful over this last year. It is a fear born of a much deeper understanding of the motivations and perceptions that move folks to such generosity in the first place. I have gained that understanding at perilous cost.

I have already experienced a situation where one persons generally nurturing nature overshadowed her ability to see whether I needed, or even wanted such coddling, and the end result wasn’t exactly pleasant. I’ve witnessed an occasion where another person was unable to make the distinction between my intent to downplay my infirmity and thereby not cause undue stress and her perception that I was too independent and that I should “give up” and let others spoon feed me, carry me to and from my bed, and likely even wipe my butt, all while I lay back and do nothing to interfere. (No, this is not an exaggeration, I swear.)

Prompted by a real life comment made by a very dear friend, I posed a scenario to one of the author groups I haunt; “If your best friend got sick, but didn’t tell you right away because she knew how upset you’d be, how would that make you feel?”

What I got back was a fairly unsurprising split between “It’s her life and her decision.” and “I’d be hurt and offended.” Yet it was the explanations that explained *why* they’d be hurt and offended that bothered me, and even frightened me to the point where I bailed on the subject altogether. Almost to a person, each cited the fact that they had the RIGHT to be told, period, and if they weren’t then this friend must not either trust them, or care about their feelings, etc. (Never mind that caring about their feelings was the exact reason the friend said nothing in the first place.)

Basically, the situation boils down to two equally opposing rights. Hers, to say nothing, and theirs to be told. I get that, but what I don’t get is how utterly selfish people can be, and justify that behavior by demanding their rights given priority at the expense of hers. In a case like mine, where my days are limited, I can’t help but think *my rights* get the priority, if for no other reason than the fact that I will be gone tomorrow, and they will live on. Does that make *me* selfish? You bet, and its just as easily justified by the basic need to survive.

So who gets the priority?

I can’t really say with any certainty. I have ever been the friend who was more interested in the feelings of others and I am quite comfortable not saying anything that will upset others. I’ve spent my life being the one who says “Her choice, her decision.” and considered the act selfless.

What I do know, and its where I draw the line, is if I am forced to be something I am not in order to give priority to “their” rights, that’s wrong on so many levels. In the case of the nurturer, express your concerns but respect that I am an adult capable of making informed decisions for myself and back off if I don’t want to wear my damned hat just because it’s cold outside. In the case of my sister, who seems to insist I roll over and let her wipe my butt, forget it. I am still capable of independence and I place a high value in that independence. Wait until I’m in a coma and can’t “fight back” before you shove your need to justify your entire existence by seeing me comfortably to my grave. (It should be noted here that when I offered that exact scenario as an alternative to “how hard it was to talk to me” she took it. That was a blow that cost me more of my will to live than I care to admit, but it proves to me just how inadvertently selfish people can be.)

For the rest who get all indignant and hurt because I chose to spare your feelings as best I could, get over yourself. You WILL be alive tomorrow and I won’t. Use the time to wonder what was wasted while I was still alive in favor of your insistence that your hurt is greater than my death.

Does that make me the asshole I warned about earlier in this post? Yes, it does, but as I said, I have always been quite capable of being that asshole. I simply choose to exercise *that* right only when it is a choice between living longer as myself, or dying sooner by giving up the bits and parts of me that make me who I am.

Energy has become a commodity in my life more valuable than dollars or drugs. The energy to stand up out of a chair, or answer an email, or even the energy to say no thank you all take their toll against reserves that simply do not exist any more. I guarantee that no one who has not been so completely drained can ever truly grasp what it is like to decide how to spend that energy, limited in amount, and on what. Do I risk driving to the store by myself knowing I may not have the steam to get back home? Do I open a can of soup in favor of chopping up bits for the crock pot? Do I brush my teeth, knowing I’ll have to wait at least a half hour to recharge enough to be able to go downstairs (and get back up again) and forage for breakfast?

And most importantly of all, do I spend some of that precious energy arguing with someone who insists on
helping
me in some way that makes them feel better but forces me to capitulate my independence? Or do I choose to separate myself from those eminently well meaning individuals so can spend that energy on say, holding down my lunch or fighting some other effect of chemo?

That probably sounds harsh, or even mean, the way I dont seem to respect their need to lend a hand, but I have to believe that the ones who TRULY want to help, for my sake AND theirs, will be capable of understanding the difference between “Doing FOR me” and “Doing BECAUSE of me.” As generous as so many people can be with their good intentions, it has to be tempered with the ability to back off and not take hold of my hand if doing so pulls me off balance instead of helping me over a rough step.

Were it not for Papa and Sean, and others like them who are ABLE to stand aside and let me attempt that step on my own, I would seriously wonder if I weren’t just being a dickwad. They are the difference between treating me like I am capable, if not well, and constantly reminding me that I am sick as others do when they fret where I walk, or how close to the edge of the cliff I get, or when they shriek because I stumbled.

Folks like Papa and Sean and Doc and Liz, and the myriad others let me spend my energy on surviving the cancer, or the chemo, instead of having to use it to defend the way I choose to live. And if they can see that, then I must not be a total dickwad after all. Its not just my imagination, in other words.

I have never been fond of selfishness, either active or inadvertent, and I care very little for people who view their world as a priority above all others, but I have learned that in order to do what so many people ask of me, to live a little longer, I have to BE a little bit selfish. If for no other reason than to maintain the difference between living and existing.

As I read back over this post looking for typos and such, I see just how erratic and disjointed it is, a fair reflection of the degradation of my ability to think as the cancer takes more and more toll on my body. I hope it doesn’t sound like I am *ungrateful* for all the help and assistance I have been given because I’m not. I’ve just come to the point where it is imperative that I pick and choose carefully what sort of help I can accept nowadays and although it WILL sound harsh, the help that is offered
only
as a sop to the giver really isn’t anything I can use anyway, and those who don’t already understand this are the ones who’d be offering such in the first place. To those folks I will say “Thank, but no thanks. I prefer to be treated as though I were still living, rather than be treated as though I were dying.”

That too sounds a bit selfish on my part, and its pretty much true. But I have lived my life being selfless in all other things and with that knowledge I can die happy, confident I’ve done the best I could for myself and for others, whether they be family, friends, or even strangers who sometimes needed what I had to give.

In short, I’ve been a good boy, raised right by my Mama, and lived the best way I know how.

Best of all, I can safely say “That’s no lie.”

Patric

Thursday, September 9, 2010

The Price of Survival

It is no real secret that my interest in living has waxed these past few months, putting me into a position of contemplating chemotherapy once again.

Where I had once been content to merely sit back and “let ‘er ride” I’ve taken a much more active interest in sticking around a bit longer.

When I mentioned this fact to Doc a couple of weeks ago, I was startled by the
excitement
in his response. My surprise was compounded by a similar response from Liz, my cancer counselor. Until that moment, it hadn’t truly “sunk in” how interested other people might be in my survival.

To many, that will sound like the quintessential “Duh moment” but keep in mind that I’ve never really had a strong survival instinct. Hence my willingness to let ‘er ride. :)

Now of course, as my time draws near, (very near, given my current symptoms) I find myself
gratified
by the enthusiasm Doc and Liz and others have expressed, and equally gratified by what I now see was their willingness to accept my previous *lack* of determination without a lot of fluff and fanfare.

All of which makes the contemplation of walking boldly back into the hell that is chemo that much easier to manage. I thought.

I mentioned in previous posts how chemo would never be a cure and that at best it would buy me more time. I also mentioned the lack of certainty that I would be able to withstand the effects a second time around. Doc and I discussed these things yesterday when I met with him to bring him up to speed and to talk about options.

“I know you updated me in your email, but has anything changed since then?”

“Oooh yeah,” I say, grinning like a loon. “Lots.”

I gave him a rundown of my symptoms, fascinated as always by the way his thoughts and emotions play across his very mobile face. Each wince and widening of the eye confirmed the accuracy of my suspicions. When I finished my litany, he asked a few questions, and then said, “Are you still interested in doing chemo?”

Oh hell yeah!

Color me excited because there was a chance he would decide otherwise, especially if in his estimation the therapy would do more harm than good.

As is the way of things in my universe, whenever anything “good” happens, there is always a price to pay. I mentioned this to Doc once and he played it down, of course. It’s silly to think there are forces at work which would see my path be more difficult than it should be, right?

Except that shortly after (and this was regarding the bone marrow biopsy last year) there was a chain of events which supported my theory. Clearly enough that Doc actually agreed when I reminded him of the fact. :)

“So, there are a couple of options available to us,” Doc says. “The drawback is that they are all performed on an inpatient basis.”

Clunk!

That was either the sound of the shoe dropping, or my jaw hitting the floor. I’m not sure which. “Why can’t we use the same protocol as last time?” I ask, trying not to let the dread in my voice come through.

“Well, because the what was left of the lymphoma was the parts which weren’t affected by the treatment.”

“Oh.”

Shit. Of course. I should have realized that.

“Also, with these second line therapies, some of the drugs have to be administered on a continuous basis for twenty-four hours.”

Clunk!

That had to be the other shoe hitting the floor because my jaw was already there.

“Twenty-four hours? How long do I have to stay in the hospital?” At least my voice
sounded
steady, I think.

Doc looks at me sort of sheepishly, then raises his head and in a confident voice says “Three days.”

Three
days
? Oh man, this just gets better and better.

Give Doc credit for checking to see if the nurses at his office had ever administered this therapy on an outpatient basis, and of course the answer was no. I could just imagine the horrified look on the RNs face when he asked, as she thought about what would happen if one drug in particular happened to leak outside of the vein. Apparently the end result is not good. :)

So.... In the hospital every three days at three to four week intervals, and this time they will have to install a pick line. Its a semi-permanent “port” which offers direct access to a major vein rather than constantly poking holes in me. That won’t be so bad, right? Right?

At this point I am numb, with the exception of wondering how much worse this protocol will be compared to the last one, and there is simply no way I can imagine it being easier.

Astute readers will recall that generally speaking, I had a pleasant time in the hospital, with the exception of the last visit when Nurse Kimberly basically put her job ahead of my freedom of choice. Logically, she’s one out of dozens of other nurses were absolute angels, but I don’t trust easily and when I finally do and it is subsequently broken, I am even more reluctant to try again.

Gentle soul that he is, Doc gives me a moment to absorb all the ramifications, listens to me rant about how very much I *don’t* want to go to the hospital again, then asks me again if I still want to do this.