Recovered Time

It has been one month to the day since my last treatment. I am in, what I am told is, recovery mode. I really do not know what that means. To me. I know what that means to my Radiation Oncologist, my Medical Oncologist, my General Practitioner, or even the ER docs... but to me, it is a mysterious phase of existence. It means waiting. I wanted to feel so much better, just because it was done. HA! ( silly, silly girl ) Ooooh, my white count is still so low I can't be around groups of people, my hemoglobin has even gone back down since the transfusion and they don't know why, I was allergic to myself; itching hands and feet every time I had a bowel movement, projectile vomiting - sometimes while in a motor vehicle. Blah blah blah, whine whine whine. I started out not being able to stop pooping to now not being able to poop. (It is all about the poop folks.) Since the surgery in November I have lost over 20 pounds. I would like to say I have been the paragon of a health conscience person and exercised while eating my vegan diet to achieve such results. No. I have pooped, puked and starved through radiation and chemo for those pounds to disappear. Cancer: The Diet. I don't recommend it.

Strangely, I am not mad, too sad or overwhelmingly grumpy. My bunnies are so glad to have me back home every day, their acting out has diminished. Pickle will be one year old this month. Having found him like a lost babe in the woods, I do not know his real birthday, so I am assigning him a date. Valentine's Day. I have never liked the day, actually hating it so much during High School, when all my friends would receive cards, gifts and candy, I passionately called it "Happy Fucking Valentines Day." Now, I will have a reason. My Velveteen Valentine.

I have a lot of things yet to say, yet to share. I have been busy, figuring out how to recover. I imagine recovery takes time. Recovery may also, if done right, give you time.

Growing Older

Soooo, big fat fail on my last day of chemo being a no biggie. Just thought I could swoop on in there and get in over like it never really mattered to start. Stupid, stupid girl. Here's a catchup, I failed my chemo two weeks ago.... at least that is how I term it. Every week is a test of my endurance, and this particular week, I failed it. My platelets were too low to get my chemo for the week so I was sent away. I had been feeling so terrible that I secretly wondered how they could safely give chemo to me, so I knew before I knew. With a week off, my platelets rebounded, my hemoglobin did not, which has been sinking a point nearly every week. So, by this week I knew I would be at transfusion level, which is where I didn't want to be through this whole endeavor. But, there I was on my supposed last day, where all the nurses are to come and gather round, singing in congratulation style for you. But not this day, I got extra this, and that, more pills and pokes (the original IV didn't take so they had to go for the other arm which they had been avoiding due to phlebitis and it took the dear sweet nurse three attempts, they bring her out for the shitty sticks which everyone agrees I am.) Then, the sick comes. The overwhelming sickness of all the poison inside me. My nurse tells me I look green, puts an ativan under my tongue and we wait. She says sweetly after a while "Its not easy being green, is it?" No, it isn't. This is about five hours in and still no transfusion, but we only have time to hang one bag of blood tonight, so they want me back tomorrow after my last radiation and to prevent the horror of the poke-fest I am to keep the IV in during the night.

Not every second of the day was a wrenching sob or a wince filled face. In fact, aside from all the super-sonic crap I spent most of the day hanging, talking learning and crying with my new chemo buddy Sam. He is only 24, and every time I see his face I feel like crying for the mere chance that any of his possibility could be stolen. We spent our time together, in that place and shared our history, or pain and the smiles that come from sharing. When the chemo gets so strong and the sicko of it is just to much, we were in our separate pods, doing what humans getting chemo do. Groan, cry, try not to puke, wish they could puke, talk to forget, forget what they were saying.

Not my last day of chemo. Not my last day.

How to Dream

I have very vivid dreams. I also haven't had a dream that wasn't in some way about cancer for some time. For one brief moment I thought that streak had ended the other night when I woke with a start from a dream, and then the remembering began. I was alone, in the middle of a very dark stage standing next to a grand piano. I was wearing a red baby-doll Christmas dress, the fabric was iridescent and very thin, which looked even more thin under the lone spotlight trained on me. I was clothed, yet naked, standing next to an instrument I had no idea how to play, on a stage. The hall was filled with every person I had ever known, and the rest of the seating was taken by strangers. All I could think while standing there with all these eyes on me was "I don't know what I'm doing. I don't know what I'm doing."

Truth is, I don't know what I am doing. I don't know how to play this. I don't know how to make it sound better to myself, to anyone else when they want to know how I feel. I don't know how to feel this terrible and act like I don't. Be so scared one second and talk myself out of it the next. I don't know how to do this, yet I feel as if I should. Not be grouchy, not be so sad, just understand it all.... but I don't.

One major side effect of treating cancer is fatigue, which means I sleep more, which leads to dreaming.

I Kinda Blow it in the Wind

Sooooo, it is Tuesday, and THAT means chemo day. Shit, I hate chemo day. I feel like this whiny ungrateful asshole, after My Mom sits so patiently ALL day right next to me, in what can't be the most comfortable chair after five hours straight. But I really hate chemo day. The anti-nausea drugs that they are doubling up on now, actually make me nauseated. The new drug (which rhymes with Yemen but I can't remember the real name) irritated my vein so now I feel like my whole arm is bruised. The old steroid that they gave to counteract the side effects of the chemo had too many side effects of it's own, so now I have a new steroid and it's side effects. It makes your heart race, which mine does all on its own, and I feel all speedy and yet still tired .... like I have been up for four days straight, which I sure as hell haven't. Seems I can barely stay awake through a conversation anymore. Which, if you had a conversation with me lately can get interesting. Kinda like Phoebe on "Friends." Nearly everything sounds a bit like "You know, the thing with the stuff!!! You know. The THING! With, the STUFF!" I know what I mean, and poor you if you don't.

It is official. I have Desitin Derriere. The radiation has reached the peak where all the good stuff in my gut had been murdered by the sanitation crew in the Radiation Department. They are so intent on sweeping any cancer cells out of the irradiated zone that any good stuff that would work to, you know digest and turn food into nutrients, vitamins and minerals are gone with the wind.....well, the wind is another story. I did that for the first time on the Radiation table and was dying the entire time of worry. Waiting for the techs to come in and detect me and my; 5 hours of chemo, heated blanket, Eva Cassidy on Pandora, squeaky little butt bubble.

I missed the Santa Party on saturday. I know that all my family had fun and I wish for them to have fun but MAN, it hurts to know, and see it go on without me. I love them all, and miss them all so much. My levels are low enough but high enough right now to be above transfusion level, but infection... nu-uh. Todd has a big bad cold so I can't even go to my parents.

Tuesday. Blueday.

One super good thing I know that has made this better is music. During radiation they play a Pandora station of your choosing and I chose the Eva Cassidy station. She is not only a magnificent vocalist she holds a major place in my heart. So, when that music starts, even if it isn't one of her songs, just someone in her vein, I am at ease. I don't count each pulse of radiation, each rotation of the machine. I breath more easily. I hum. The treatments don't take as long and I feel less tense afterwards. There have been only two days where the music was different, one when the Oldies was left on accidentally from the last patient and I was nervous and tense the entire time. The other was when the tech purposefully chose the Adele station, which I liked, but not as much. My Mom has been indulging me (well, when doesn't she?) and letting me play cd's on the way to and from treatment, and that has been not only fun, but part memory lane and a reawakening as well. Music. If I can't eat food, I'll eat song.

A Christmas Wish

When asked what I was up to, I answered "oh Cancer, Cancer all the time. It is the All Cancer Network here." And it seems to be that, truly. When the phone rings it is someone asking about cancer, or a someone from the Huntsman Cancer Hospital. My fluids, my food, my bathroom trips all revolve around cancer. My sleep, my pills, my level of nausea.... I can't seem to watch a Christmas special without having it somehow reveal something about cancer and what is now omnipresent in my life. The little bitterness's that used to be part of just an every day existence, don't weigh so heavy anymore. Those societal pressures I used to stack on top of the pressures I felt on my own, they simply don't matter anymore. I just want to be well enough to enjoy the holidays with my family. I want to be with my bunnies and give them as much love and joy as they give me. This Christmas isn't going to be about me giving presents, for I haven't done any shopping and I won't be able. I am the one receiving this year. So much love and care I barely know where to put it all. All the wonderful people I meet every day at Huntsman, their kindness and the stories they so freely share with me. My beautiful aunt Ruthie, and her knitting club that knitted hats for me. Strangers that sent love to me, made from their hands. My parents, every day giving so much of themselves I would never in a countless lifetimes be able to repay them. I know I had made a Christmas wish before, to not have chemo and radiation and that it had not come true. It feels so selfish to wish for something like that, when there are so many gifts given to you, and you never had to ask. Sounds strange to hope to find luck, even grace in this cancer. But if it is there, I hope I find it.

Special Risk

I should be sleeping. I am exhausted. Not only do I have this cancer, that is now in my lymph nodes, I have a raging kidney infection and the beginning of a cold/cough that the Medical Oncologist I met with today is hoping doesn't derail the start of my chemo and radiation next week. One more thing, on top of the one more thing that was supposed to be the one big thing. The chemo and radiation was supposed to be the beginning of a clinical trial that would give me an additional 12 weeks of chemo after the initial course with the hopes of adding additional percentage to my survival rate. After meeting with the Medical Oncologist that ALSO happens to be a hematologist and knew something was up with me and MY blood by looking at my file (he said he could tell I had either been bleeding a lot or had a blood disorder, which I do) now says that this special killer chemo will put me at even higher risk for transfusions and kidney failure than just the regular course of Cisplatin (which will put me at special risk anyway, because that is how I work it, in life and whatnot.) This does not make the clinical trial sound like the best bet for me. The Doc said a "normal" or "average" person going into the trial he wouldn't be so worried about, but me, different story. I don't make things easy. My body doesn't make things easy. Never has. I get embarrassed and hang my head when these realities are traversed. In fact, the doctor used the words Special Risk so often in our conversation that I told him to just write it across my whole file. My Mom just counters with my simply being special. I don't make things difficult as I always put it, I am just special. She's my Mom, that's her job. Her kid is super sick and what is she going to do? She is going to be the most amazing creature; wash and fold my laundry, read cancer literature, drive me hundreds of miles to doctors appointments, cook for me, talk with me, cry with me, laugh with me, give me permission to be as scared as I truly am. I feel special when I am with her. When I am with both my parents, and they are sitting by my side, in the waiting room, waiting for me to feel better.