Wishing on a Blue Star

by Kris Jacen

  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.

  “Yeah, I do.”

  I really don’t have much choice in the matter because there are others besides myself who would be genuinely pleased to see me live a little longer, for my sake as well as their own, and it is in respect for them and myself that I have to do it.

  Besides, *I* want to live longer, and what a novel change that is from last year when I simply, selfishly, just wanted the pain to end.

  “Okay! I’ll get the admittance papers drawn up and you’ll come back here on Friday. (tomorrow) I’ve got a meeting on Friday but they’ll get you all set up.”

  Do I detect a note of happiness in Doc’s voice? I think I do, beyond his usual cheerful self, and that decides me, right there.

  What the hell, man. I’ve always had a high tolerance and threshold for pain, so I can do this. Maybe not easily, or not even easily as last year, (haha) but I’ll manage because I have to.

  Better still, because I want to.

  Patric

  A Place to Belong

  Taylor Lochland

  I exited the restroom and looked around, but I didn’t see a single member of my astronomy club. I plopped down on a bench, and hissed as the metal burned the backs of my knees. I shifted in my seat and tugged on the legs of my shorts.

  Several minutes passed with no sign of my compatriots. They probably haven’t even noticed I’m not with them. I’d only been in the group a couple months, and didn’t know any of them very well yet. I’d hoped to fix that by going along on their annual amusement park outing. Yeah. That worked well. As usual, Aiden was the only one who had said more than a dozen words to me. I reached into my pocket for my cell phone, but before I could pull up Aiden’s number, I heard a familiar voice.

  “Hey, Neil. There you are.” Aiden sat down next to me. “Everyone else headed off to the miniature golf course, but I came back when I saw you weren’t with us.”

  I slipped my phone back into my pocket. “Thanks for that. I’m glad somebody noticed.”

  “Hey, no problem.” Aiden silently watched the passers-by for a moment. “I was the new guy not too long ago, so I know it can be tough. This group has been together for awhile, so they all have their own friendships and cliques already.”

  “Yeah, I could see that.” A breeze kicked up and blew Aiden’s auburn hair into his face, and I had to exercise a large amount of self-control to avoid reaching over and pushing the strands back into place.

  Aiden ran his fingers through his bangs and shot me a smile. “Don’t take it personally.”

  “I’m trying not to. It’s probably just as much my fault. I don’t make friends very easily.”

  “Well, you have me.”

  My lips parted in a grin to match his. “I’m glad for that.”

  “Who needs those stuffy old guys, anyway?” He turned his attention back to the park. “I have an idea. Are you up to experiencing physics in action?”

  I raised an eyebrow. “Depends. What kind of physics?”

  He nodded in the direction of the huge roller-coaster in the distance. “Ever ridden the Millennium Force before?”

  “Nope.”

  “Me neither. Want to give it a go?”

  I stared at the tall, steep hills of the coaster and took a moment to gather my nerve. “Let’s do it.”

  Aiden rose to his feet. “If you chicken out when you see it up close, just tell me. I won’t hold it against you.”

  “Not going to happen.” I laughed and took off toward the ride.

  As expected, the line was long. We made small talk as best we could over the blaring music coming from the nearby speakers, and before we knew it, an hour had passed and we were standing in front of the train.

  My heart pounded as we climbed into the car and strapped ourselves in. Aiden looked at me from the corner of his eye.

  “Scared?”

  “Hell no.”

  Amusement flickered across his face. “The death grip you already have on that handlebar says otherwise.”

  I let go and shook out my hands. The park employee came by to check our lap bars, and then the cars began their journey along the track. Without realizing what I was doing, I grabbed onto the handlebar once again as the train climbed the hill, and my fingers tightened when we reached the top.

  “Aren’t you going to put your hands in the air?” Aiden barely finished his sentence before we plummeted downward.

  I held my breath as the ride continued its twists and turns, jerking my body around and occasionally lifting my ass off the seat. I kept my eyes glued on the car in front of mine. Aiden laughed, and I wasn’t sure if it was because of me or the ride.

  Aiden patted my hand when the train rolled to a stop and the lap bars released. I unfastened my seatbelt, my skin still tingling where Aiden had touched. My body continued to shake as I climbed out of the car.

  “You okay?” Aiden caught my elbow. “You look like you’re about to fall on your ass.”

  “I’m fine. I need something to drink, though.” I headed toward the nearest concession stand, but moved slowly, not wanting to lose the physical contact. “That was intense.”

  “I think that was the point.” Aiden chuckled and dropped his hand. “Are you glad you rode it?”

  “Hell yeah. Thanks for suggesting it.” My nerves had returned to normal by the time I reached the counter. “Did you want something, too, Aiden?”

  Aiden waved his hand. “I can get it myself. Thanks, though.”

  “Welcome.” I bought my Pepsi and waited for Aiden to buy his. “Think we should go to the miniature golf course and look for the rest of the group?”

  “I don’t know. I’d rather hit a few more coasters with you.” One corner of his mouth curled up. “If you think you can handle it.”

  “You’re on.”

  We spent the rest of the day on the rides, alternating between the huge coasters and the smaller, gentler ones. By the time we met up with the rest of the group and boarded the bus, I was exhausted and sunburned, but happy.

  Aiden sat next to me, and shortly after we hit the road, he fell asleep, his head dropping to my shoulder. My heart pounded, and against my better judgment, I brushed my thumb across his cheek while pretending to stretch. “Sorry,” I whispered, but he didn’t stir until the bus stopped in the library parking lot, everyone standing up and saying their “good nights.”

  Aiden straightened and rubbed his eyes. “I didn’t drool on you, did I?”

  “I don’t think so. A
nyway, what’s a little drool between friends?”

  He yawned and then flashed me that smile of his, which gave me the courage I needed to do what I’d wanted to do for much of the day.

  Everyone filed out of the bus, and as soon as Aiden and I were out of the others’ earshot, I touched his arm. “Hey, Aiden?” When he turned around, I took a breath, the words coming out in a rush. “It’s supposed to be clear tomorrow night, so if you’re not doing anything, you could bring your telescope to my place and we could set up in my backyard. We could grill something to eat before it gets dark, and have our own private star party.” I paused and shoved my shaking hands in my pockets. “If you want to. No pressure.”

  The corners of his eyes crinkled. “I’d love to. Sounds fun. What time?”

  Able to breathe again, I took my phone from my pocket and opened my astronomy application. “Well, sunset’s at 9:13, so, how about dinner at eight?”

  “That works. Email me your address.” Aiden opened his car door, sat down in the driver’s seat, and fastened his seatbelt. “I’m looking forward to it.”

  “Okay. See you tomorrow.” I took a step back so he could close the door, and I grinned like an idiot when he waved at me as he drove away.

  * * * *

  As I set up the grill, I glared at the clouds threatening to take over the sky. A drop of rain hit my face. I cursed under my breath at the weather gods and waited for the deluge, but all that came was a light sprinkle.