I’ve got my crankypants on today. I am on the verge of a breakdown, which I am eagerly anticipating since once I have it, I can get back to the business of being me. I almost typed normal, which I have never been, or will be. Even commercials are annoying on TV – especially the flonase one, in which I am told repeatedly that six is greater than one. Thank you very fucking much flonase. I know that the American education system is flawed in a lot of ways, but I am pretty sure anyone who ever attended school learned that six is greater than one. In fact, my guess is that unless a person was raised by wolves, EVERYONE knows that six is greater than one. I don’t need big pharma trying to sell their product to me with a condescending commercial. So fuck off Flonase.
And Snapple commercials – also fucking stupid. And any feminine hygiene commercials, except for those great commercials from a few years ago, where the woman mocked dancing and riding horses when a woman has her period. If you want to sell me you shit, appeal to my intellect, or make it direct, but don’t try to trick me. Again, I suppose it’s because I don’t consider myself a sheeple, that I think most of what I see or read is skewed and manipulated and trying to make me a mindless consumer. With this is mind, I have taken a new approach to shopping, from an article I recently read about living a more simple life, and death – when I am going to buy something, I am now going to ask myself, will anyone want this when I am dead? Because if not, I don’t need it, because people will only throw it out when I die.
These are the things keeping me awake besides the decadron tonight. And since I cannot escape the omnipresent thoughts about this fucking vicious monster inside me, you, my friends, will also be subjected to it until it either a: it goes into remission, or better yet, vanishes or b: I have a breakdown and stop stressing over it or c: I die. Yes, I said it – die. Because we all do, and since I see more and more people my age doing it, and because of a conversation I had with my old friend Anne, in which we realized that most of the people we hung around with / dated in high school are, well, dead, it’s been on my mind. And the tragic mess that is my house is also a reminder that should I die tomorrow, from this disease, some other medical issue, or from walking under a falling piano that Wylie Coyote was planning to drop on the Roadrunner, it could happen. There are journals to be shredded and/or burned, wills to be amended, and just other odd bits to be destroyed/discarded. I am not worried about what I put on Facebook or in this blog, because whatever I put on a computer will live forever. I used to think about that when I wrote in my journals, but there are some very dark times in years past, that are better left unread. Nothing that would enrich or improve anyone’s life. Of course, there’s a burn ban in effect in Schuylkill County for the next month, so it’s not like I can burn them right now anyway…but if you read this, and if I should die before the end of May, there’s one journal in my bedroom, and I think two are in the giant steamer chest in the living room with all of my photo albums and a copy of Madonna’s Sex book which I put in there because it would be too much trouble for Andy to move all the stuff on top of it to get in there and find it. Somebody get in there and destroy that shit ASAP once I am cold.
And while we are being candid here, I am gonna put this shit out there too, again because I am cranky and I am gonna be up for a few hours because the sucky decadron make me superhuman and amps up my anxiety x100 the night before what we are hoping is the last chemo for the next 20 or 30 years. When you have the stupid c-monster, or any other chronic disease, people will ask you how you are feeling? I really want to tell people how I feel, but most times you just say, fine, or tired, or great, and slap that stupid smile on your face, to make other people feel more comfortable. After the next two or three weeks, that might be true, but this deep into chemo, the answer I bite back is this: I feel like shit. I could sleep 24 hours a day, every day, except when it’s warm and sunny, and I want to go out somewhere but don’t feel up to driving myself. So I sit on the porch. I feel nauseous most of time (this is new, I have to eat every few hours or address the need to hurl with other treatments) and nothing that I eat or want to eat really tasted good. I have this weird smell in my nose that won’t go away. While my eyebrows have not completely fallen out, most of my eyelashes have and I wake up with my eyes crusted shut every morning and my greatest fear is that I will lose my excellent health care insurance because I will get too sick to go back to work and I will be reduced to substandard health care, or worse yet, medical assistance, and will not be able to afford getting well. I have weird pain, I forget shit all the time because of my chemo brain. And I am afraid every time I go to the doctor that I will get bad news and have to continue with my treatments indefinitely. That’s how I am feeling – how are you? But you don’t get to say that. (sorry I know I’ve said this all before, I apologize for the redundancy. No, not really, this is my fucking blog and since the only people here in the house to talk to at this time at night have their eyes permanently sewn open and their mouths sewn shut, there’s a lack on interactive conversation.) Random thought: Does Chris Isaak even write music anymore? You never hear about him anymore. That’s what I need, I playlist with Chris Isaak, Morrissey and Elliott Smith, with a dash of Jesus and Mary Chain circa Darklands tossed in there and I would never leave my bed again.
Yes, it’s true I am feeling sorry for myself. I am scared to death of what’s to come in the next month. I am scared that I will need to have more chemo. I am scared that the scans will show something I don’t want to know. I am not a fan of this nonsense at all. I’d prefer to lie in bed sleeping all day because I am just a lazy cow instead of it not being my choice to do nothing. I would prefer to go through life not thinking at all about whether or not I am going to have to have treatment again. It’s so not fair. I long for the days when staying my jammies all day was a decision, and not because I am too weak to get dressed. I want to enjoy a shower, not dread the exhaustion that follows. I want to look forward to cooking, not just pray I can find something that tastes good and requires minimal exertion on my part. I want to enjoy drinking water, and not fear it will taste like poison when I drink it. I want to walk up a flight of steps without gasping for air like a fucking trout out of water. I want eyelashes dammit!
It’s now 2am. We are leaving at 7:30 tomorrow because my doctor’s appointment is an hour earlier. Of course it would be on the day that Andy is going to be my chemo pal. Hopefully the Dr. will be on schedule, and we’ll be in and out of there, and Andy can go sleep for a few hours at Tom’ house while I get my treatment, so he’s not up all day and then has to go to work with no sleep. What does that mean? It means if you feel like visiting me while I am pumped full of poison, I will be in the second floor infusion room, hopefully one with windows, and a decent automated bed (not like the bed that required manual adjustments the last time I was there) after 11 am, because before that, we will be getting Asian rice crackers, Starbucks and some more oxycodone, to make chemo more fun. It’s only 3 more hours until decadron dose number 2. Good times.
I was going to try to end this with something positive, but I feel that would be fake, so I am just going to start packing my backpack for tomorrow. I’ve found that since I don’t need to bring a blanket to the infusion center, I can actually get the laptop, my stuffed friends, and snack all in one backpack so I don’t look like a dying homeless person when I go to the hospital. I suppose that’s positive. And I can throw my sheets and blankets into the washer and actually dry them before I go so I can have a clean fresh bed when I get home, so that’s positive. And I already have ginger beer, honey and pineapple juice to get through the next few days. That’s plenty positive.
I think I might actually blog from the hospital tomorrow to document the day’s events. That could be fun. Now I am off to fold another load of laundry and eat a yogurt. Then try again for sleep. So curl up with your favorite toy, my puppies, and sleep tight. And think about all the people who have bed bugs, and be eternally grateful you don’t. Bon soir.
Addendum: There should be an assessment period before people are allowed to be on Facebook. Like they should have to have a myspace and it should be monitored for stupid and annoying things that are misspelled, bigoted, or obviously scams or urban myths. If a person posts that shit, they should never be allowed to move up to facebook. I am tired of being the internet police, sheesh.
Also, why when you google anything about cancer, everything is pink and has to do with titties? I mean I get that breast cancer is a huge issue for women, being that I am one of them, but what about all the other killer cancers out there, why does it seem we only care about cancer that affects the one part of women that, aside from the vagina, are something of interest to men? That pisses me off.
22 April 15 | Categories: c-monster, Philosophizings, Picture Perfect, Profound Insights, Random Rambling | Tags: annoyances, anxiety, bald, blackness, c-monster, cancer, chemo, cyst, death, depression, doctors, dying, endometrial cancer, facebook, flying monkeys, friends, laugh, sleep, uterine cancer | Leave a comment
I made myself get out of bed and shower this morning. Blame the sun, all warm and golden, blasting through the multiple blankets that I use as curtains during the winter (over the real curtains) to block out the delightful breeze that cools my head which comes through these old windows in my bedroom. (also the reason I can hear every dog-damned word that is spoken/yelled/chattered in the street outside which is why I am sitting here typing instead of sleeping because I took two pills to try and sleep and no sooner than I was sliding into blissful opiate dreamland, inconsiderate people arrived home at 11:30 and had to make sure they slammed ever fucking car and house door they could find while merrily chattering all the way, and ruined that attempt.) So here we are.
In truth, I was going to write this entry early. Then I didn’t because I was consumed by a wave of darkness and to avoid contemplating the sucking blackness, I took a nap. However, after showering, I decided I needed to waste half of a tank of gas and get out in that sunshine and try and dispel the gloom that is wrapping itself around me like a blanket with static cling. I tossed on some sweats, a hoodie, and flipflops, because it is spring you know, and was at least 35 degrees, and out I went. I plugged the phone in for music, and then headed out to the valley. Driving around mindlessly while singing loudly always seems to sort things out, one way or another, so drive it was. I decided I wanted a peanut butter milkshake and a hot dog from Sonic, so I headed in that direction. Of course, my music of choice was loud and fast, as it usually is, unless I am trying to enhance a black mood, when we turn to something in the way of Elliott Smith. But today I needed to sing loudly about pain and depression and sorrow, past regrets and hopelessness, which would also be Elliott Smith, but without the painful plaintiff beauty of his chords. When I hit the quarter mile on the Brandonville Road, I laid my foot down on the gas as took it as it was meant to be driven, easing up as I hit the decline. It felt so good to be out, with the sunroof open, and have that minute or so with nothing more on my mind but that feeling of speed and screaming the lyrics to “Keep Falling Down” loudly, frightening the birds and friendly woodland creatures in earshot.
One good thing about winter is that it covers a lot of sins. Like garbage. Now that the snow is melting and everything is still dead dead dead, all the trash so carelessly tossed out the windows of cars is heaped along the roadside in the little streams of melting snow that run along the road, and around dead deer carcasses. Carcasses, carcassi? Whatever. The Ringtown/Brandonville valley roads are beautiful in spring, summer and fall. In winter, they leave something to be desired. Driving them brings up a lot of memories – from trips to the dairy to get milk with my dad and siblings, driving past the first home I ever knew but can’t remember at the #5 damn, picnics at Stauffer’s park when my parents would spend the day arguing and the kids getting splinters from the rickety old wooden merry-go-round, summer vacations “back home” when I was living in California when we would drive all day, cooler in the back, listening to a mix of Springsteen and Led Zeppelin, and top 40 and that new “punk” music I brought with me from California, and late night drives with quarts of beer between our thighs, laughing and carefree. And hours of driving and thinking. It’s my go to to try and sort shit out, just like driving the coast in California was – well not exactly, because well, oceans make everything better, right, whole. But drive I did. To Sonic. Got my milkshake and some popcorn chicken with barbecue sauce because I hadn’t eaten yet to day. And which I later regretted, because it wasn’t really chicken per se, just some chicken like substance with coating. Should have just stuck with the milkshake.
Anyway, as I drove I noticed that many more homes in the area are littered with shit. No other way to describe it, because it’s just like extra stuff that people own that they won’t throw away but have nowhere to store it so it’s just outside their houses in different states of decay. And I started thinking about whether the outside reflects the inside, or if these people don’t care how their house looks, and when did we start being so concerned with collecting so much stuff that we don’t even have enough places to store it. I always used to envy the houses in the valley because they were so neat and tidy, so pretty, and always wished I could live there, to be away from our too small, too old, too mismatched house. To play in a yard with grass. To not be surrounded with ugly black coal banks everywhere (for you young ‘uns, there was a time when our little town was in the midst of gaping scar of strip mining, surrounded by slate banks – much of that is covered with trees and shrubs now). The valley was where all the happy people must live. Now, I’m not so sure.
Anyway, in my critical analysis of what these signs of decay and garbage mean to society as a whole, I realized it was spring. And spring means robins. I must now find a robin. (Fact: Robins, while not seen much in the winter, do not migrate, they just stay huddled together for warmth. When spring comes, they emerge to seek food – robins are individualistic birds. They only get together to mate and survive winters).
This is now a quest. There are crows. Hawks. Geese. Red-winged blackbirds. Sparrows. Chickadees. No robins. (or bluebirds, for that matter) Where are the robins? I am not going home until I find one. As I continue to meander, I drive past places with memories, still trying to deal with all that is going on in my head. I figure that cemeteries, with their vast open spaces, will be a prime source of robin findage. I head in that direction. Then out of the corner of my eye, I spot a red breast, but I am driving way too fast to clearly confirm robin sightage. I am fairly certain that it was one, but until I can definitively confirm that it was robin, we shall continue to drive.
People who know me, know that cemeteries are like one of my favorite places in the world. I love the peace and sanctuary of cemeteries. Unfortunately, and in my opinion, oddly, the cemeteries are still mostly snow covered despite the last two days of sun, and their clear open spaces with direct sunlight. Much of the snow elsewhere is melted, but not really in the cemeteries. And no robins. I do notice a tombstone of a friend’s husband – her name is on it too, waiting for her. I think how odd, that your space is already reserved. Not that I don’t have plans for my own death rituals (which some of you will now be please to know, no longer include Andy having to chop up my body for the vultures to eat for a traditional sky burial, but do now include my ashes being made into bottle rockets and other firecrackers that can be launched into the sky). I am also looking for a trash can now as well as robins, to get rid of the evidence that I have been to Sonic. I check three different cemeteries, and nope, no robins. Just crows.
I’ve been driving for a little more than two hours now. I have managed to negotiate the roads well, missing all of the deepest and widest potholes. I feel bad for feeling sorry for myself just because I have cancer, since my drive has reminded me that many of my friends have recently suffered tragic losses in their lives and illnesses in their own families, and that there are people who live in countries that have no electricity or water. Some watch their families slaughter or live in countries at war where their homes could be torn apart by missiles or a tank at any moment. And here I am whining about having cancer. I need to be slapped. Don’t get me wrong, I am still depressed. I still feel hopeless, and scared and angry. But I am starting to see that it’s not as bad as it is for some people in this world. I decided I am going to take one more road to see if I can find robins, and then head home. My world is dark right now, but I’ll get through it. I’ve been through darker and more painful times, I’ve faced fear before. I just wallow a few days and get over it. But first, I need that robin.
I drive past the spring where we’d get water in the summer and wash cars and drink beer alongside the road outside of Brandonville. I remember being very stoned and listening to the Cars debut album over and over. And being very wet. We washed a lot of cars there when we were teenagers. And drank a lot of beer. I cruise through Mahanoy City, remembering a time when it was a pretty town, much like Shenandoah used to be, but now is just old and tired, full of rotting/abandoned/decrepit/burned out buildings, and covered in the grime of the coal region. I drive out towards Frackville, past the prison, and co-gen plants, sad that this is what’s left for this area. And then I see it. A fucking robin. No mistaking it this time. A fucking robin. Mission Accomplished. It’s all hopping around, looking for food on a partially snow covered lawn. Boom.
And I headed home.
Now I’m here. I am not sure how I feel, but I know I’m going to work tomorrow because I already promised to cover intake for someone since it’s Monday and they need to be in court. And I’ll be there Wednesday, because it’s a morale event, and I said I would bring cream cheese. Thursday we are headed to Pittsburgh to see Off With Their Heads play and stay at my brother’s condo. Friday, we are going to the Warhol Museum, and I don’t know what else. Saturday, we are going to see Pennywise in Philadelphia. Now this may seem like an expensive week, but the tickets for OWTH were only $12, and the condo is free. Pennywise tickets were only $25, and Andy is paying for those as well as for the Warhol Museum. We need to do something fun, to get us out of this rut we are both in. Fortunately, we like many of the same bands, so it’s something we can do together. So at least I have something to look forward to this week – and next week is…drum roll….CHEMO and another stretch of being confined to my bed for a week while I try to like the way water tastes. Life could be worse, and that is what I am hanging on to. Because when I lie in bed, tossing, it seems like there’s not but a black hole that’s sucking me in.
My friends, it appears that most of the neighbors have finally gone to bed, and the next sound to wake me up with be newspaper delivery in about 4 hours. Fortunately I had a nap this afternoon. Tomorrow is work, and more blood tests (it’s CA125 test day) and I get two stickers this time, because last time someone was in the sticker room when I was done my blood draw, and I couldn’t get one. I will have to share a pic of my prizes in the “no sticker, no blood” collection. I’ve got all kinds now, and will have to start another sheet soon. Hopefully, blood sucking will be followed by dinner with my shark sister Ashley at this Himalayan restaurant we both want to try. So there are things to look forward too. Life doesn’t suck that hard, I guess.
The itching of my eyes indicates I should rest, particularly since I still don’t know where my glasses are. Hopefully, writing tonight will keep me from too much tossing and turning. Sleep well my loves, and pleasant dreams to you all, and happy Monday. Be a busy worker bee.
23 March 15 | Categories: c-monster, Philosophizings, Profound Insights, Random Rambling | Tags: amusement, annoyances, anxiety, bald, blackness, cancer, carnivorous kangaroo, chemo, chemotherapy, death, doctors, dreams, driving, fear, flying monkeys, hope, life, road trip, robin, sadness, sick, sleep, snow., sorrow, spring, sun | Leave a comment
It’s never a good sign when I go to start writing and can’t find my glasses. I mean, I can do this without them, that’s what the little magnifying glass is for, to make this shit bigger so I can see it. But I’ve been having a lot of anxiety lately and now, being unable to remember where I put my glasses is going to be added to that mess of thoughts that are rattling around in my skull.
Anyway, I’ve not been writing – not because I haven’t wanted to, because I have, but there was a 10 day stretch where I couldn’t sit up for extended periods which makes the whole typing thing a bit difficult. Like I said, I have had some serious anxiety, something I have never really had before in my life, not at this level. I know it’s related to the c-monster and the uncertainty that is part of this go round with this nonsense. I also know that writing would also help to purge some of it, and I haven’t been able to. I also realized today that I am also really angry this time, angry that I have to deal with this again, angry that I have to put my life on fucking hold because I live in a country that doesn’t believe in national health care. You see, when you have cancer, it’s not like having diabetes or high blood pressure, stuff that is serious, but manageable and affordable for the most part. If I lose my health insurance, I am fucked. I mean, I know that I can still get treatment, but not the best, and certainly not without the added stress of worrying about how to pay for it. So, even though I have FMLA, because there is no finite end of this in sight, I am constantly in fear that I will lose my job, and with it my health insurance which has thus far assured me that I will have quality care. And in my reading over the last few weeks, I’ve learned that while I cannot be denied insurance for a pre-existing medical condition, I can be denied coverage for treatment related to that condition. For example, I can still get health insurance, but they don’t have to pay for ongoing cancer treatments, as long as they cover everything else. This information adds to the anxiety. I am not going to belabor this, I just need to say that it makes me angry that human life is only valuable when it furthers a fucking political agenda. Adequate health and quality health care shouldn’t be something anyone has to worry about. But I live in America, where what you get is what you can afford. I shouldn’t have to worry about things like this, I should be able to focus on getting well but the reality is that I can’t just worry about my health, I have to worry about being able to keep health insurance so I can get treatment I need.
It all comes down to the fact that this time, the c-beast is still inside me. They can’t just cut it out and give me chemo to track down and kill any escapees. All the visualization in the world will not erase from my mind the fact that my whole life is on hold while I wait to see if heavy metal poisoning will stop these arrogant killer cells from multiplying, and hopefully they die off and leave me alone. And unless it vanishes, that shit will remain inside me, waiting, taunting me. I don’t believe I will live in fear, but it’s always going to be there, in the back of my mind. Every pain, every discharge, every weird wiggle or twitch in my body will have me wondering what is going on inside. I am angry about that. I am angry that I have to endure this again, that I have to spend 10 days in bed because I can’t sit up without wanting to hurl, and there’s nothing to hurl, because I’ve eaten so little that it’s all bile. And all of this leaves me scared; I can put on the happy face, I can make jokes, I can smile and laugh and pretend it’s all ok, but I am fucking scared to death that it won’t be, and then I feel guilty because I then thing my thoughts will create my reality and …WHAT THE FUCK IS WRONG WITH ME??? Maybe I remember that the last time I went through this I was much stronger and positive, but then maybe that was just the way memory works, maybe I felt the very same way.
So yeah, I don’t know if it’s the same for everyone who has cancer, but I lie in bed at night and wonder what I did to deserve this. Was it something I ate? Having the laptop on my lap? Being a fat cow? Negative thoughts? Thinking badly about others? Revenge? Consequences of bad decision making? Drug use? It’s just not fair. I want my life back, I want to just be the happy and carefree grasshopper that I used to be. And then I go downstairs and I see Andy lying on the couch asleep on a Saturday night and I feel like it’s all my fault he’s there because his paycheck goes to making sure we have food and electricity instead of alcohol and clubs like it should be for a 23 year old. The last place I was on a Saturday night when I was 23 was asleep on the couch, unless it was because I didn’t get home until early afternoon. And even then I was probably going to spend some money on some substance that would keep me up for another 24 hours. I accept that my teeth are shit for those poor choices, but that should be enough punishment. The poor kid works overtime almost every day. He shouldn’t be here taking care of his mother, it is my job to take care of him. It’s wrong.
I swore I wasn’t going to whine about cancer incessantly when I started writing this but it’s hard not to when your whole day revolves around whether or not you are sick or going to blood tests or appointments or wondering how bills get paid and how to keep your health insurance. I sometimes wonder if I sleep so much because I am sick, or because I don’t want to have to think. (I know it’s because I am sick, but I can’t help wondering). I’m scared and I’m angry and I am worried. I wish I could break down and cry but my stomach ties up in knots and my chest gets tight and I toss and turn and wish I could just forget for a while what day it is in my treatment cycle and forget when I have to go back. I’m 2/3 done with this series of treatments, and my numbers look good, but at my last doctor’s appointment, Dr. K pointed out that while my numbers look good, they aren’t where he wants them to be at this point, so he subtly hinted that six cycles may not be the end of my treatment. And so, the end I was keeping in sight, is no longer so clearly defined. And sure, I know many of you are thinking but he didn’t say you have to have more treatment, and be positive, and stay focused and blah blah blah. Easy to say when the tumor is not inside of you, and trust me, I remind myself of all of those things a million times a day, while I count the hours until the next CA125 test to see where that fucking number is, knowing that even if it’s improved, it’s not a guarantee. Everything is so much more complicated this time, and as a result, my mind is constantly picking apart every twinge and tickle.
And since I can’t literally kick the shit out of the monster inside me, I let other things frustrate me, and then I hate myself for that, because I am not that person. I want to be Polly-fucking-sunshine and I can’t be, even though I constantly try. And lets not even talk about disaster house, my prison during my sick days. I spent two hours today trying to do some organizing and hardly made a dent. I ask Andy to do stuff, but let’s be realistic, the kid works 12 hr days for 5 days a week, and I am not gonna wake him up to ask him to clean the bathroom or do dishes. My friends offer to come help, but I am too ashamed to let anyone in to see the disaster this house has become, and I can’t do anything myself. I feel pleased making my bed and hanging my clothes on hangers. I vacuumed 9 steps the other day, and was too tired to finish, which then made me angry that I can’t fucking do anything. I would wish the house would burn down, and let me start fresh, but that would affect my neighbors and that just wouldn’t be fair.
So yeah, I’m pretty frustrated. It will pass eventually, I’ll get to a better place but in the meantime, I’m in this dark place trying to stay all sunny and hopeful. What I really planned to do when I started to write was to write about the amazing kids my son went to school with at Milton Hershey School (go ahead, click and visit them, this will be here when you get back) and how they started to raise money for me to get my own car so I don’t have to rely on Andy all the time because right now we have one car, and Andy has to drive me places and pick me up, after he works all night. I can drive myself, but when he’s not here and has the car, I’m stuck because I can’t really walk anywhere for anything. It’s on gofundme – it’s amazing to see what some of these young adults donated – crazy – for me, and their messages – it touched me beyond belief. I only found out by accident, and Andy had no idea either. More than the money is that these amazing kids wanted to do this for me, and help Andy and I. But maybe even more touching was the lady at the pharmacy the other day when we were coming back from Hershey. I went in to pick up my “auto refill” pills, which were only partially refilled, so I had to wait. This older woman came in, she was 75, and her refill was also “auto refilled” which meant she had to wait too. We started talking, as my bald head kinda clued her in to my cancer, and she told me how she had a quadruple bypass and then had clots in her lungs and died three times on the operating table. (For the record, she also told me there was no light, and none of that nonsense all those people who died claimed to see) She was a very religious lady, and kept telling me she was testifying. When they called her for her prescription, we ended up hugging each other. As she was leaving, she shoved five dollars into my hand and insisted I take it, and we wished each other well. I was moved by how much a stranger cared about me, and how you can make a connection in the most unlikely of places, on a day when I felt like walking death, and all I wanted was to get home and get back into bed. Of course, I realized that had they not screwed up both of our prescriptions, our paths would never have crossed. Still, it doesn’t mean I am not changing pharmacies, because I am tired of their mess ups. Anyway, it was serendipitous moment that made my day.
Well I think I pretty much got a lot of my ire out in this post. Wasn’t the funniest or most reflective one I ever wrote, and totally not what I was planning in my head, but it’s good enough for me. I’m gonna try and get some sleep, since I want to try to get a few things done tomorrow. At least get a load of laundry or two washed, so that’s it for now lovelies. Be well and enjoy the start of spring. I’m gonna go spend a few hours chanting and hope it lulls me to sleep. Sleep tight.
22 March 15 | Categories: c-monster, Philosophizings, Profound Insights, Random Rambling | Tags: amusement, anxiety, bald, bears, blackness, cancer, carnivorous kangaroo, chemo, death, depression, diagnosis, disease, doctors, endometrial cancer, flying monkeys, narcotics, pain, peace, radiation, rambling, restless, sadness, sick, sleep, spring | Leave a comment
Yes, I know that spring is still a few days away according to the calendar, but you really should go by my feet. I’ll explain. I hate shoes. I used to be barefoot all the time, but then I moved back to good ol’PA, where life is not cooperative with my need for foot freedom. This means that at some point, I can not longer plod through the snow in sandals. My foot liberty is curtailed when the temperature gets into the teens, or snow accumulated that it covers my toes. On my little escape to Maryland this weekend, my wiggly toes realized that the temperature was above freezing, and plotted an escape. Monday morning, my fake super cheap ugg boots were set aside for an old pair of Doc’s sandal and I called “Spring.” (note: I still think ugg boots are stupid, but I can say they are warm and when they are only 19$, you can’t go wrong – at least the snow doesn’t soak them as quickly, as say, sneakers) So there you have it, I have declared winter to be over. Today I wore capris to work too…
There are other signs as well here in Northeast-kinda-Central PA. Some are clearly evident, others not quite yet, but my springy senses tell me that even those will emerge by the weekend. Mounds of snow are nearly pure black as they always are within a day or two after a snow; the melting snow on the highway reveals tons of garbage pitched out of car windows by nasty pig people or overturned big rigs who can’t drive in the snow. Firecrackers ring out at night. Bath salt heads screaming the street increase in number. The vampire children emerge from their winter slumbers. And before you know it, the pajama pants parade will commence on the main street of town, when all the teen mommas who proudly announce their job is “stay-at-home-mommy” on Facebook will don their finest pajama pants, pop their spawn into a stroller (first dressing the little in seasonally inappropriate garb) and march proudly, sprag smoking twixt their lips with the ash dropping on the kidlet’s head, up and down the avenue. What a sight the herd of future and/or present CYS clients are! Trying to act like they aren’t pushing a baby buggy, their posturing screams “look at me, I’m a fertile breeder” as they try to attract the attention of their next baby daddy. The cluster of children who have children will then mass together at either the notorious One Stop Shop, where you can get birthday cards, cut rate sunglasses, cold cuts, beer, and all of your bath salt and paraphrenalia needs met, or they will move to the corner closer to the town’s main intersection, and sit on the curb, alternately ignoring or screaming at the little person, while they wave to the potential absent fathers as they walk/drive/stumble by. That very same corner where I once hung out with my girls in my wicked youth, when we would wait to be notified where that nights party was, or for some older boys to stop and ask us to go for quarts or to burn one. Things harder to do when you are pushing a stroller. Although from the looks of Team PJ Pants, I somehow believe they probably manage to push those stroller along narrow wooded paths or up slippery slate banks to get to a bush party. Some nights I wish I had a van and the authority to just scoop those poor babies up and get them to safety – but alas, as a caseworker I don’t have that authority without a court order. The final marker of spring will come when the days final hit 60 degrees, and the pajama pants are replaced by shorts and tank tops that would make Miley Cyrus look modest, and those poor tots being carted about are still roaming the streets at 11pm. Then you know, summer is just about here.
Pennsylvania black snow mountains…way to make winter even more depressing that it already was…
I managed to escape the my mesmerizing hometown, and came down from the tower to visit with my brother and his wife this past weekend. As wonderful as it was to get away, and spend the weekend eating, drinking and watching my family drink to excess and give me tons of great blackmail video on my phone, it was exhausting and I was glad to come home. My brothers, as wonderful as they are, should never sing. They can dance, but the singing…no, never, nyet. But it was a good time, and amazing to be out of my bed, and socializing with humans, and Bailey, my brother’s playful and willful boxer, who was so excited to see so many people, jumped all over me while I was lying on the couch and gave me multiple bruises from his paws as he attempted to lick my head. I am seriously hoping I don’t have to have an exam tomorrow when I see my Dr. because I may end up in a psych hold for real this time because I am so bruised. No Dr, I wasn’t trying to hurt myself, my brother’s dog threw himself on me, and assaulted me. And then it’s a 72 hour involuntary with chemo. How super would that be?
Yes, tomorrow is chemo infusion number 4. It was a little sketchy earlier, because I came home from work and took my nap only to wake up feeling nauseous and with a low grade fever, but it passed. I probably have one now, because I am now on my second dose of my pre-chemo decadron, the lovely steroid that makes me feel 20 degrees warmer than I actually am. Which is why I am up writing at 5am, instead of sleeping. Decadron is also responsible for keeping me from sleeping. It’s intent is to keep me from getting violently ill from the chemo, but as a steroid will, it gives you a sense of invincibility. So, instead of sleeping, I watch the same episode of Vikings three times, did two digital jigsaw puzzles, sorted my snacks for tomorrow, did two loads of laundry, looked for claw clippers, because the toe and finger claws are growing quickly, cleaned out my purse, packed monka-monka, lotioned my feet, scanned some receipts, updated my C.V. with some additional training info, and ate some crackers. I am sure I did other things, I just can’t remember them. Oh right, I made seven hundred trips to the bathroom as I slurp water to try to plump up my veins for the good time poking tomorrow. I am sure anxiety has played a role too. Since I have to leave early today with my chemo-buddy for the day, Ms. Crystal, I might as well stay awake and just forgo sleep. I did have a few naps, after all.
It’s amazing how great my family, friends and co-workers have been, in being my chemo-buddies, giving me rights, cards, gifts, food (especially food). And even what might seem like little things, like text message and calls, just to see how I’m feeling – it means so very much. I am blessed with astounding people in my life. And I can’t forget how much Andy has stepped up to help too – he’s been working a lot of overtime to make sure bills get paid, and buys groceries, and brings me food when I ask. I am very proud of him – he can still be an asshole sometimes, but he’s still a kid – and feel bad he has to sacrifice to help care for his mom. And don’t tell me I shouldn’t, because that’s what moms do. So thank you for all of you who are there for me, even if I tell you I don’t need anything – I appreciate it all more than you know.
It appears that it is nearly time for me to get ready for today’s fun and to eat some breakfast. I’ll be back again soon – til then, aloha, sweet friends.
My sister-in-law, hiding under the table because she didn’t want me to take her picture. Then I explained that cameras can take pictures of people hiding under tables –
My baby brother, my dad and my sister-in-law rocking out to Eminem
12 March 15 | Categories: Uncategorized | Tags: amuse, Andy, anxiety, bald, cancer, carnivorous kangaroo, chemo, chemother, chemotherapy, children and youth, family, flying monkeys, gratitude, pajama pants parade, spring | Leave a comment
There’ something dead in my throat. I am guessing it probably crawled in while I was snoring and became trapped and slowly met its demise. Whatever it is, it’s really nasty and it adds to the nasty metal taste in my mouth that I cannot get rid of. Apparently, I forgot that you don’t get used to chemo as you move further into treatment, you just get sicker. And I am – I am still not up to getting out of bed and driving to Hershey to do my blood work, but that will change tomorrow, because I can’t put it off anymore.
This whole chemo thing is getting boring. TV is boring, being sick is boring, drinking tea is boring and this weather? It sucks. If I ever get cancer again, it better be in the fucking spring, because somehow I think if I could go sit in the sun for a few minutes a day, I’d feel better but alas, I am trapped here in the tower of gloom and clutter with nothing to do but toss side to side and hope to slip into drug enhanced sleep.
The chemo is killing my sense of humor too. I suppose part of that is because I am trapped here in solitary. Of course, I crack myself up, but I am a captive audience. A captive audience with no energy to escape. I did manage a shower today – and I made some toast, so I guess that’s progress. I just feel like my brain is turning into jello – I haven’t had any serious academic conversations in days, nay, months. I feel like a jumbo hamster on a squeaky wheel, just going around and around, with occasional escapes into the real world, until I am captured by the chemo beast and shoved back in the cage. Even pinterest doesn’t hold my attention for things I will never make or buy the way it used to. Red pandas only amuse me for a short while, and alpacas, well they just make me long for a house on the beach. I have this list of things I could probably make while sitting here if only my eyes would agree to stay open for extended periods of time. I mean things have gotten so bad, that I don’t even turn off Hoda and Kathie Lee at 10 am anymore, I just suffer their stupidity. I even find myself watching the 700 Club more than once a week and that doesn’t bring any laughs either. Okay, well it did today, when the only man who I believe is Pat Robertson told some viewer that it was okay that their daughter did yoga, but only if she didn’t chant afterward, because that’s the worship of Hindu gods. The funniest part was the seriousness in which Pat Robertson tried to mimic the chant. I guess you had to be there.
Anyway, I am gonna keep this short, because being in the tower and watching reruns of Kitchen Nightmares and the Middle don’t really make me the wicked conversationalist. I did however watch some show on the History channel last night that has had me thinking all day. Apparently, mummies have enough DNA in the remains that once the technology is available, we can clone, or reanimate them. Now – stay with me on this – the scientists state we aren’t that far off from being able to do this. I mean we have already injected human brain matter into the brains of mice successfully. Reanimation could quite possibly involve retaining all your memories and experiences of your previous life, and then you would start adding new ones. Would that be a good thing? I wonder. I mean some things you want to forget. And if you remember the past, does it also mean that all your ailments and illnesses are also with you? What if you died a particularly painful death? Would you remember that? And would you be reconstituted in the same state you were when you mummified? Would you want that? Would you want to relive all the experiences you had all over again or would you want a fresh start? I tend to believe we are energy just moving from one form to another, so I don’t know that I would like a restart for this life, if I was already dead. Wouldn’t you always wonder if you were still the same as you were, or if something was missing, or damaged? No one who knew you would still be around, so how would you know? And isn’t the choice of whether you come back or not, taken from your hands by whoever manages to bring you back to life? It seems like an easy question at first, but it’s incredibly complicated when you really think about it. I know there are people who have passed in my life that I would never want to have back in my life again, and then there are people I would love to have back, but I’ve moved on, and would they fit into the life I have now? And what about these mice with human brain bits? What do they do with them and whose brain bits are they inserting in there? And what if they escape and start reproducing? Are these random combinations ever a good thing? Maybe we should worry less about GMO corn and more about these human-mouse hybrids. Think about that.
Well that’s all for now my friends. I’ve exercised my brain more than expected today, and I have some ice cold killers in Alaska to watch now. Have a wonderful afternoon, and wish me luck on getting to Hershey for blood work tomorrow, because I need another sticker for my collection. Plus I am sure the vampires miss me. Until next we meet.
24 February 15 | Categories: c-monster, Philosophizings, Profound Insights, Soapbox | Tags: afterlife, amusement, anxiety, bald, bear, blackness, brains, cancer, carnivorous kangaroo, chemo, chemotherapy, death, doctors, flying monkeys, hospital, rambling, random, science, sick, side effects, sleep, tea, treatment | Leave a comment
Hi there kittens!
It’s Tuesday. I’ve made five days of work so far. Woo hoo. I even manage to get through an intake, complete with the funnest amount of paperwork EVER! I can’t wait til next week!
I know, I know, my joy is infectious. Which is surprising because my hair started to fall out yesterday when I was busy showering for work and believed that I had been attached either by leeches or wet black snakes all over my body. Turns out it was just chunks of hair. You really can’t notice yet, and I am hoping it stays that way until at least Friday night, because if it lasts that long, I am having Andy shave the sides and I am gonna rock a mohawk this weekend. There’s definitely not enough left for liberty spikes, but hopefully I can get a really wicked mohawk going this weekend. Maybe I’ll even color it with some kool-aid for old time’s sake. This will probably be the last time I will ever dare a mohawk, so mark your calendars.
Much discussion was had yesterday about the impending loss of eyebrows as well – if you have followed this blog from the beginning, or if you know anything about hair loss from chemo – you will know that you lose ALL your hair. Legs, arms, pubes, eyelashes and eyebrows along with the hair on your head. I don’t mind the legs at all. Having no eyelashes is odd, but no eyebrows weirds me out too. I didn’t do anything last time about them, but I am going to this time. I don’t want to draw them on, because that just doesn’t work for me, but I might glue some on, or maybe crochet some, or use fuzzy fake caterpillars. Think of the fun when I drop one on the floor at work…EEK caterpillar! Nope, just an eyebrow. Think of all the things I can put above my eyes in lieu of eyebrows. Plastic farm animals. Spaghetti, cooked of course. Orange slices. Gummy worms. Duct tape. They can also come is different shapes – like a big V between my eyes to scare people. Or just one raised eyebrow. Or I can attach them to my glasses. For a change of pace, I can attach them to the back of my head, just to keep it interesting. It will be nice not to wake up with a mouth full of hair in the morning, or have to drag the nest of hair out of the drain. It takes at least 5 minutes off the time it takes for me to get ready in the morning.
In less exciting news, I found out that in my quest to make sure I had mid-length disability insurance I elect for the coverage that would last until I was seventy. Unfortunately, that means I need 90 unpaid days before it will kick in, instead of 15. FML. I am less worried about money than I am keeping my health insurance – if I were to lose that, I’d really be fucked. I am blessed with excellent health care coverage. But you know me, ever the pluck entrepreneur, I’ve got some stuff to make and sell if I find myself really desperate for cash. And no, I don’t mean my painkillers. Or Meth. Speaking of making things, last time I lost my hair, I made fancy little hair animal sculptures for those who so desired them – I hate to waste perfectly good hair. So if you would like a rabbit, or a puppy, or perhaps a lemur (they are all gonna look the same, I will just give them exotic animal names for your enjoyment) leave me a comment on this here blog, and one can be yours, gratis. I will even mail these special trinkets for those of you who may live on the favored coast, if you find you can’t live with out one. The one thing I am a touch negative about is, that when my hair comes back, it comes back curly, and I hate looking like one of the hair bear bunch (see below)
I took a brief interlude to do some eyebrow research and as you can see there are a lot of creative options. I did not know, but wasn’t surprised to find out, you can also buy stick on eyebrows made with hair, for that realistic look. I am pretty sure I will find a better alternative. Like fur. But for your viewing pleasure, I provide the following collage. I’m quite fond of the black eyes of death. It will give me that Uncle Fester look I so covet.
Also during my little break, I finally checked my blood tests from yesterday to see what’s what. My CA-125 marker is lower than earlier this month, which is good, but still not in the normal range, but I will take what I can get. Other levels are lower than last time, and lower in a not so good way, which means I will either get a bag full of liquid vitamins and stuff at chemo, or, the dreaded neulasta shot. Let’s just hope I can get them up a little with better food choices by next Monday. It’s amazing what the internet can teach you, and while also filling you with dread. Like when I looked up CA 125. It’s the marker in your blood for ovarian/endometrial cancer. It was only slightly elevated in this test – two weeks ago is was about 10 points higher. Which means the chemo seems to be doing its job. Well, of course it is, my hair is falling out and I am tired as shit. Until this month, I didn’t know what a CA 125 marker was. I didn’t what a lot of things on my blood test meant. Now, I know – and believe me, I could have gotten through life without having to know, ever. But I do, and I imagine, am wiser for it.
I am trying to get back to healthy eating once again – I had made the most beautiful taco salad this morning with the other half of the marvelous avocado I had yesterday. I was swinging my bag on the way in to work and out flew the salad. A sad, sorrowful mass of spring mix, perfect avocado, sweet yellow cherry tomatoes, taco meat and beans all lightly dressed with some sour cream, like a healthy oil slick on the office floor. And since the healthiest of lunches was destroyed, I had to eat cookies for lunch, and a bag of chips for dinner. We’ll try again tomorrow. I’m still a little broken up over it.
Well that’s about it, happy people. Tomorrow is hug it out hump day. I am limiting my hugging lately because, I am not sure if you know this, but people are germy. Like until you have to be careful about being around the infectious, you don’t really think much about germs. Now there are certain people I will conscientiously avoid, because they don’t wash their hands. I constantly use hand sanitizer to the point that I have icky dry patches on my hands. Last thing I need right now is the flu or a cold. I have also manage to get past some of the anxiety issues keeping me up at night. I slept a solid six hours last night. Go me! I’m going for the big six again tonight…so I must bid you all most pleasant dreams and restful slumbers. I’m hoping for a snow delay in the morning – it’s unlikely, but a girl can dream. And let me know about those hair sculptures. Peace, lovelies.
21 January 15 | Categories: c-monster, Philosophizings, Picture Perfect, Profound Insights | Tags: anxiety, bald, cancer, carnivorous kangaroo, chemo, chemotherapy, cyst, flying monkeys, food, funny, happiness, hats, hope, humor, insight, sick, side effects, sleep, squirrels, surgery, tumor | 1 Comment
Let me begin with this: I am not going to be making a resolution involving vodka and orange juice, because I decided that my relaxation cocktail is just that: pineapple, orange, and veggie juice with coconut vodka. It’s mighty tasty. I am having a lot of anxiety this evening (as will be discussed in the next paragraph) and I am trying to chill because I need to be bright eyed and bushy tailed for my Dr appointment tomorrow. I know I gained a little weight. I am not sure how, but I feel fluffier. I’m not stressing about that, because in three days, I’ll be so sick that food will be my enemy once again and the only thing I’ll want to eat are my go-to foods: pineapple juice, english muffin, oatmeal, yogurt and ginger beer. I want to make a pork roast tomorrow for dinner but I am afraid if I eat my friend, the pig, before chemo, I will lose my love for the other white meat the way I have lost my taste for artichokes and parmesan cheese the last time. And if I can’t eat bacon, what’s the point of living? Right now I am trying to coordinate with my brothers to get me to chemo and back because Andy is afflicted with the winter death plague, and I cannot be trapped in a car breathing his germs for an hour while we drive to Hershey. As it is, he is forbidden to be within six feet of me. And if he gets close, I pelt him with a hand sanitizer. So right now, it’s looking like I will be arriving two hours early for my appointment, and then waiting an hour or two for a ride home after we’re done. It’s gonna be a long, long, long day. But when in my life has anything been simple or easy. Enough stressing about what hasn’t happened yet, we have to review today’s adventure.
Let me preface this with this: the internet is a dangerous tool. Useful, but dangerous. Damn Penn State Hershey didn’t put my MRI results in my “My Health” account like they do with with my CT scans. How am I supposed to make myself anxious all night before my appointment if I don’t read them like I read my CT scan reports? Hmm? How can I prepare for the worst if I don’t have the info? I, of course, interrogated the nice young technician who did my MRI as to what she saw. She confirmed that there is indeed something in there, but I knew that – when I asked her if I should be prepared for an unpleasant surprise at my visit tomorrow, she would not commit. That typically means yes, I should be, because when they don’t put your fears to rest immediately, they are trying to find a way to avoid a straight answer. So we shall see. But again, I can’t worry about that until tomorrow. That is the point of the relaxation cocktail.
Well it was a lovely ride to Hershey. The fog was thick and murky on the interstate, as I tend to like it. It feels like driving in a thick cloud. I forgot it was a travel day and that Canadians would be in our country and on our roads, making driving difficult, which can also be said of New Yorkers, and also those from New Jersey. They should just stay home and enjoy their holidays in their own country/state. I had to stop and get something to eat because I was feeling nauseous, so I also took a percocet because it’s hard to tell if I am feeling sick from not eating or withdrawal, so I addressed both. I tossed back my chocolate milk and rolled into the parking lot at The Cancer Institute, realizing I would need to pick up my parking pass tomorrow for this lot for my treatments. I scurried into the building, looking like I rolled out of bed and fell into the door because I was trying to dress in things with no metal so I wouldn’t have to change into a gown. Nope, that didn’t work. I soon realized I had to go in the main entrance, and I meandered down to the radiology department, the same place that had tried to empty the cyst for the last year. I was the only one there, so I was personally escorted to the MRI room. I filled out my questionnaire about all of my surgeries and tests and radiations and chemos and skin pokings and jabbings and big giant incisions and medications and answered some math word problems about trains and wrote a short essay on what I did on my winter holiday. I signed releases I didn’t read. Then I was escorted to the changing area. It was pretty much the same deal as going through radiation, except there are no animal themed changing rooms and no waiting corral. I did get a locker for my stuff, and I actually had two gowns that covered me, instead of feeling like I always had to close some area that was exposing skin.
In typical fashion, I needed to repeat my name and birth date about 3,129 times. I had to show them my tattoos – MRI tip – an MRI will cause certain inks in tattoos to swell/itch because some inks have metal particles in them, particularly bright, vibrant colors. It’s not the best idea to get a tattoo right before you get an MRI. The technician asked me if I wanted some music during the procedure, and I said sure, but you probably have nothing I listen to – and to my surprise, she said give me the names and I will use Pandora. So I rattled off some of my faves: OWTH, Against Me!, The Go Set, Pennywise, Alkaline Trio, excited that I wasn’t going to be forced to endure One Direction, or Creed, or worse, Nickelback,
We entered the MRI room and to my surprise, the MRI machine is not so different from a CT scanner. However, there is the obvious lack of decorative stickers. I pointed this out immediately, and suggested some Brave, or Jungle Book, but no Toy Story 3, because I am still traumatized from that one. The tech said she’d check but they probably cant because of the risk of metallic particles.
Curiously enough, the room itself has a background hum that sounds like the womb sounds that my Sleep Sheep makes, which would have been soothing if not for their loudness. Unlike the CT meat slicing machine, the MRI tunnel is entered feet first. I had to get an IV started because there would be contrast dye for this one. They put some boards and blankets on my belly, and start the IV, which actually hurts at first. I told her to choose my right arm, because I was saving the left for chemo on Tuesday. Chemo tip – always go for the left arm. You will get a lot of fluids and will spend an inordinate amount of time in the bathroom – you want that right arm unencumbered. We got the IV issue worked out and that arm got strapped down. I was given a emergency call bell in case I started to freak out for the other hand. Then they put my headphones on, and I get launched into the tube. It’s a pretty small space, and I am a pretty fluffy girl. I had wiggle room but not much. The music started to play, and amusingly, the first song is an Alkaline Trio song, Blue in the Face, which ends with the line, your coffin or mine? I found this so amusing but being that I had to remain still I was not allowed to chuckle. The MRI imaging is done in time limited sessions. 45 seconds, 1.5 minutes, and then 2, 4, 5, 6, and (2) 8 minutes. Then the dye is injected, and you do 2 more 2 minute and 4 minutes sessions, and then (4) 18 second images images holding your breath. The instructions to hold your breath are supposed to come through the headphones – the tech broke into the music to tell me to follow along, except the instructions were in spanish, and she then had to just tell me what to do each time.
The actual imaging sessions are noisy. I was doing okay though, because I had music. Curiously, even though I had given her the names of the bands for Pandora, I got mostly Alkaline Trio and the Menzingers, and no OWTH for the first session – there was some Taking Back Sunday and some AFI – but no OWTH or Against Me!. This was tolerable initially, and I shouldn’t complain, because it could have been worse, like noted above, Nickelback, or even, ~shudder~ Macklemore or Pitbull. When the tech came in to start the dye, I asked her to restart Pandora with OWTH and the other requested bands – I got one OWTH song, and then it went right back to the Menzingers – weirdest thing ever, I wonder why that is? Anyway, the last sessions were the most difficult to stay still during because the machine was literally rattling. And your body gets really hot. Like it’s cooking. But I did really well keeping still, I turned on my meditative brains and pretended that I was a corpse. Of course, then runaway brain came along and I started to think about what it would be like to be buried alive, and this is as close as I hope to ever come to it. Then I started to think about all the poor people who were buried alive and what that must have been like to wake up in a box underground and be trying to claw your way out, and then the terrible realization that this is it, and you are trapped and never getting out. I then realized that I need to modify my living will to specifically state that under no circumstance whatsoever am I to be buried, or placed in any boxes unless my heart has been removed from my body or my head severed. That freaked me out. I realized then that the only suitable way to die would be drowning and then eaten by fish. Fear of being buried alive moved to my number 2 fear. Clowns were downgraded. Fire is still at the top. Again, drowning would be the only acceptable way to go.
Returning to our discussion track, there’s a lot of noise during an MRI. Banging and whirring and swishing and thunking. I did okay with most of it, the music minimized it but it still all seems to be going on by your ears, instead of where they are taking pictures. At one point it felt like the hair on my legs was being magnetized Totally bizarre feeling. It’s not constant. It starts and stops, and they tell you through the headphones when the next imaging will start and how long it will last. I only got caught off guard once with the loud banging, and fortunately, since you are in a restricted space, you can’t really jump out of your skin. I kept referring to my meditation practice and controlled my breathing the best I could, trying to relax. This is an important tip for those having an MRI. Work on your breathing. When it was all said and done, and I got to sit up, my whole body was stiff from staying still for so long. Even though the actual imaging session are short, the whole process lasted about 1.5 hours. Keeping still is a lot more work than you would think it is. As I mentioned, I asked the tech what she saw, but I also asked her why they do MRIs on a Sunday. She said they have to staff the MRI 24/7, and since someone has to be there all the time, they decided to make use of those hours by scheduling outpatient scans so they use the time effectively. There are a lot of emergency and rush procedures during the week, and it’s really stressful. Weekends are more laid back, there’s no tension and it can accommodate both staff who want to work only weekends and patients who need an urgent but not immediate scan, or people who can’t take time during the week. My tech said she actually prefers being there and doing procedures on the weekend. I have to say, it is a much more pleasant experience for the patient too because you aren’t jammed into a room of sick people to wait and you don’t feel rushed and everyone seems more calm and relaxed. There’s also better parking and fewer people in the buildings. After I regained my sense of stability, I was given my key to my locker and changed into my clothes and then scurried (IE. Walked slowly and stiffly) to reward myself with a chestnut praline latte at the hospital’s Starbucks. Twas yummy.
I took a longer scenic route back home – I had planned on going to dinner with my sharksister, Ashley, but she came down with the flu or plague or west nile last night, and we had to cancel. I was disappointed because I was really looking forward to seeing her, but we’ll have time, I have 4 months of appointments yet. We were going to go to Pho Miss Saigon in Hershey – a super yummy pho/noodle house – I still don’t have much of an appetite, but I was looking forward to Vietnamese iced coffee, which is my most favorite. If you frequent the Hershey area, I highly recommend the spot, particularly if you like pho or noodle dishes. It was still quite foggy as I headed home and was dark, so more stupid people than usual were about to hinder my ride home. Tomorrow is doctor and blood work day, and laundry. Weirdly, I need to make sure that I have a fresh blanket and sheets on my bed for after chemo – because of the whole weird smells thing, I need to have things as fresh as possible the first few days. Andy is also going to need to clean the car and quit smoking in it, because the odor of cigarettes is the one scent that makes me want to immediately hurl once I start chemo. At least I know what to expect. I also don’t have to have the nasty neulasta shot, at least not initially, so that’s a huge plus. That shit is the worst part in my opinion – the pain in your bones is as horrible as the pufferfish. I’ll have to get a picture tomorrow while I still have my hair…I figure it will be gone by the beginning of February I’ve started work on a fox hat, and I have patterns for a raccoon, panda and queen crown.
So that was the MRI. To summarize, much like being buried alive but without the bugs or dirt or paralyzing fear. Also much noisier. Not for the claustrophobic. In other news, I facebook blasted that my cancer is back – it may seem like an attempt to get attention to some, or putting “my business out there” but you know what, I don’t really care. People are naturally inquisitive – they want to know – and I don’t think this is something I need to keep private. It’s scary and people are curious. If I make it easier for someone else, all the better. With that ma petites, I shall leave you for today. I’m gonna finish my cocktail, and tuck myself in. Hopefully I’ll have more details tomorrow. Sweetest dreams my friends, and like I said on facebook, send me your good vibes, positive thoughts, prayers, animal sacrifices or good juju, I can feel it and it helps.
And don’t be afraid to ask me questions – it doesn’t bother me a bit.
5 January 15 | Categories: c-monster, Philosophizings, Profound Insights, Random Rambling | Tags: alcohol, anxiety, bald, biopsy, buried alive, cancer, carnivorous kangaroo, chemo, chemotherapy, clowns, cyst, death, doctors, flu, flying monkeys, happiness, hershey, mri, music, pain, plague, procedure, pufferfish, radiology, restless, stress, tattoo, treatment, tumor, uterine cancer | Leave a comment
That’s right, my lovelies – I did not run over any armadillos, I did not get a cat, I did not mix vodka with orange juice, I did not become a brain eating zombie, I managed to stay awake for at least one hour a day, I resolved to clean the house when absolutely necessary (which it never truly was), I did not use a drone to attack the neighbors, I ate no cauliflower, I checked my phone once a day, and I never told facebook what city I live in, no matter how many times it asked. 10 Resolutions made, 10 completed. Completing such daunting tasks gives me such a sense of satisfaction. I don’t know that I can top this in 2015, but damn it, what’s live without challenge?
I’ll get to this year’s resolutions in a moment. I really want to give the real ending to the attack on the cyst, because I couldn’t before I told my dad (aka pop) the facts – I didn’t want to ruin the holiday for him or for my niece – I mean I had to ruin it for Andy and some of my brothers, co-workers and friends, and of course, it was a bit of a downer for me too, but I couldn’t do it to my dad. I think I’ve told most people, if I haven’t and this is where you get the news first, I’m sorry. It’s not the thing you get any enjoyment out of telling people and one thing I’ve learned is that no matter how many people I tell, there’s always going to be someone that I forgot to. I can think of five or ten or fifteen now. Fact is, I’m tired of telling people. Here’s a fact: Telling people you have cancer (again) is fucking hard. You feel bad that your are giving people bad news, you feel you have to make them feel better, they always ask how they can help and it’s just generally a bad thing. If I tell you, just tell me that you love me. Or if you don’t love me, just say, hey, whatever you need. I’ll keep talking if I feel like talking about it, and if I don’t keep talking about it, and you have questions, ask me. I have a blog, seriously, it’s not like this shit is secret.
Anyhow, I read the CT scan before the surgery. I saw the words “possible malignancy” – I saw the look on the ER doctors face when he had to tell me there were some concerning items on the scan. I know my body. I knew something was wrong. After surgery, when Minion 1 arrived, and I asked her about the offending nodule and if they found cancer, she danced around it, saying that they “don’t think” anything is wrong, but they are only using human eyes. I much preferred the way I found out the first time – the resident held my hand and said it straight up, we can’t confirm it yet, but from the preliminary pathology, it looks like cancer. This time, I knew I was going to hear not very good news at my appointment. I know when they take a biopsy, they look at the sample to make sure it’s a good one. They don’t just randomly snap out a bit of tissue and hope for the best. And while they are checking, they can notice whether they have good cells or abnormal cells. Sure, they may not know if it’s malignant with certainty, but they know if something’s up or not. Minion 1 needs to work on her delivery. I should give lessons.
I also knew I wasn’t healing as quickly as I have in the past. I had some pretty hideous bruising. I lost my appetite. I knew things were different, but I wanted to believe what the Minion 1 told me. So when I got to my appointment on the 22nd, I was ready for the news, or at least I thought so. I went by myself because Andy was in Pittsburgh with my nephew and brothers for a Steelers game. I didn’t want him to not have fun because I had an appointment. I asked my niece’s mom to go with me last minute, but she couldn’t. So I just resigned myself to going it alone. I got there on time, checked in, and waited. I got weighed, and found out I’d lost 40lbs since October. That’s a lot. And then I waited. My blood pressure was almost normal, but there was much excitement by the nurse when I told her I was off the morphine and just taking percocet. I wasn’t in pain. That’s good. Yay. No need to undress. Hang out, Dr. will be in. Now, Dr. K is a presence. He’s a tall, funny guy, with a southern twang to his voice and he’s always cracking jokes with nurses and staff and patients. I suppose you have to when you have to give the news he’s giving. He’s almost never late. I can sometimes hear him talking to other patients when I wait for him. Today I can hear him telling one that they will beat this thing, and that they will be in to review the chemo and radiation schedule with her, etc, etc, etc. Not good. It’s still taking a while for him to see me. I wonder where my treatment coordinator is – I have presents for her and Nurse Sue and Dr. K – just little holiday gifts to say thanks. I don’t hear Anne outside either – not good. Finally, Dr. K arrives with Minion 2 from the ER nightmare. They sit down. Sit. That doesn’t usually happen, so yes, it’s another harbinger of doom. Dr. K looks at me and doesn’t mess around – the biopsy shows cancer, and launches into how we could treat it. No surgery, no radiation, two different ways to address it with chemo, there’s no protocol for cancer in this area, quite frankly he doesn’t even know how or why it came back, it shouldn’t have at this point, once you pass two years, there’s a much less likelihood of recurrence. I just kinda look at him, and tell him I don’t have dying on my agenda. He said that’s good because he hasn’t, and isn’t, giving me permission to die. I’m not crying, I’m almost relieved because now I know – I awkwardly hand him the card and ornament I brought him – tell him I don’t know if he Jewish, or celebrates Kwanza or Christmas, but he can hang the ornament on his Hanukkah bush if he wants to – and thank him for taking such good care of me. I can tell this is as hard on him as it is for me. I think the Minion 2 wants to bolt, but is glad I am not crying and that I am, matter-of-factly, addressing what I need to do. Dr. K tells him to talk to me about the MRI, since he hasn’t staged it yet, and needs the MRI to determine what all is happening in the dark recesses of where the stupid pufferfish lies. I tell him I think the unwieldy beast is starting its dark resurgence because I’m having some discomfort in the area, and he says that’s what he wants to see on the MRI. Minion 2 has ceased sweating, I truly believe he thought I would lose it like I did when they offered my the psych hold in the ER. I maintained calm. OK, I was in shock, but it still didn’t involve crying.
You are never really prepared for the news. I’m still not sure I have accepted it, and probably won’t until they hang the poison bag on the rack and it starts dripping into my arm. Dr. K and I hug, he assures me that we will kick cancer’s ass and be laughing about this in no time. He tells me this is a shitty way to end the year, and a shitty way to start a new one, but go home, enjoy the holiday, and they will call me with the chemo schedule the day after Christmas. I tell him I trust him, he got me through it the last time and will this time. I shake the Minion 2’s hand, and like a scared bunny, he hands me the packet of papers for checkout and flees the room. I head to checkout. As I stand there, alone, having just been told my body has betrayed me, it hits me, and I tear up. I have cancer. Fuck. The receptionist asks me about the papers – I tell her all I know is I have a 4 week appointment on the 5th, and Dr. K wants me to have an MRI. She asks if it is scheduled – I tell her I don’t know – I was just handed papers by the Minion 2. She looks, and doesn’t have a clue why I have been handed all of Dr. K’s results and notes. I suddenly realize I need a note for work, and another prescription for percocet. I ask if she can get that for me when she asks him about the other papers. She does – he tells me I’m off until after my 4 week check up. I realize we never even looked at the incisions. Good thing I heal OK. She comes back with all my papers – I ask her if she can give Anne and Sue my cards and ornaments. She will. I’m still not really connecting to any of this. I get my appointment for the MRI and visit summary and head for the elevators.
I don’t break down until I am in the car. Then I am a snotty, sobbing, weeping, sniveling, snorting, coughing, choking mess for about five minutes. And alone. Horribly alone. And also very glad to be alone because I don’t have to worry about making anyone else feel better about my breakdown. I text who I need to text. I need to get groceries while I am down here. It’s funny how the trauma and the mundane activities intersect here. I need to get food. I also need to get home. I start the car and go to Giant, and mindlessly wheel the cart up and down the aisles, tossing shit in I don’t really need, but I have a fuck-it-you-only-live-once attitude and decide we’re having a fucking rib roast and ask at the butcher counter for a small incredibly expensive rib roast. Two hundred dollars later, I’m checking out of Giant with my rib roast. I forget to buy water. I’m not even hungry. I need to go home and that’s the last place I want to be. My iPod won’t fucking charge. I’m not going home until I have the opportunity to sing loudly with my iPod, and preferably with OWTH, until the pain inside is purged. I must also see my friend, Pony-Pony. I need some normality in this surreal scene. I also need gas. Actually, GAS first.
So I drive – first to a gas station. I fuel up and head to the MHS barn to see Pony-Pony. He’s not there. They probably are making him be the stupid donkey is some live nativity somewhere. I keep driving. I see my friends, the goats, at the goat barn, and I yell “fuck you” at the sheep in their pasture. My iPod is still not charged. I see some cows. I see another pony, and another, none of which are Pony-Pony, but at least I saw them. I keep driving. I realize my blood sugar is quite low, and I am a little shaky – I’ll got to Hardee’s. This whole time I feel like I am in weird freaky film where my character is in a dream world unbeknownst to everyone who sees her. It’s like none of this is real. I finally get the iPod charged enough to commence screamsinging. Fortunately, RTE 322 is not busy and I can cry and sing and drive all at once with no worries. It’s not real. It’s not real. I get to Hardee’s and order some sort of burger and onion rings. I manage to choke down the onion rings. I head home.
The drive was cathartic. And pretty scary. Occasionally I would look down at the speedometer during pauses between songs. I pushed 100+mph more than a few times. It’s not really my fault the car goes that fast. I slowed down several times. I wanted to get home and then I didn’t. I would have to tell Andy and then other people. This is the part that sucks. I finally drove home – I walked in and Andy was all excited to tell me about his trip and the game – and I killed that with a look. He asked how the visit went and I lost it. I sobbed and cried and told him how sorry I was he had to go through this all again. My kid is a good hugger. He told me I was the strongest person he knew and it was just cancer, and I could beat it. Then he proceeded to hug me some more. When he was adequately covered in snot, he went and got the groceries from the car. I didn’t want my expensive rib roast being stolen in this neighborhood
The C-monster is such a fucking burden. Not only do you have to worry about being sick, but you have to worry about bills and work, and the house and telling people and not upsetting people all while being told that this is the time you are supposed to focus on yourself. If there are people who are able to do that, I wish they would have a network where you could find out their secret. Because once you recover from the shock, you have to think about who to tell, and when and where and how and how are they gonna react and if they are old, like my dad, are you going to kill them? And then there’s the logistics – appointments and chemo and food and laundry and the joys of all the changes in smell and touch and taste. And when you have been the head of household for the last 24 years, that just doesn’t stop, you still worry about that. It’s just a lot. And no matter how much you have people tell you they will do whatever they can to help you, you don’t want to ask, because you don’t want to be a burden, and you want to be strong and tackle this yourself.
I’m tired of writing tonight, and I am tired of watching this fucking pathetic Steelers game while I type. I’m tired of being sick and doctor’s appointments, and not wanting to get out of bed. At least there’s minimal pain. At least there’s plenty of food in our house and we have functioning utilities. I can still write. My bed is comfy. I have a new blanket to take to chemo with me. It’s all gonna be over in 18 weeks (it better be). Tomorrow is the MRI – it will be a whole new experience for me, so look forward to that blog entry. I sure hope there’s no metal inside that suddenly gets torn from my body like I’ve seen in horror movies.
Good night my happy people…I’ll be keeping you updated – hug on your loved ones and do something fun with them before they can’t, or you can’t. Sleep well. Oh, about those resolutions, still working on them. I won’t be bound by your constrictive linear timetables. Kisses.
Oh yeah – three years ago yesterday, I got my first diagnosis. Happy Anniversary. I didn’t know the 3rd anniversary was also cancer.
4 January 15 | Categories: c-monster, Philosophizings, Profound Insights, Random Rambling | Tags: anniversary, annoyances, anxiety, bald, biopsy, cancer, chemo, chemotherapy, children and youth, cold. flying monkeys, ct scan, cyst, diagnosis, disease, doctors, family, fear, flying monkeys, gratitude, happiness, health, hope, hospital, humor, ipod, life, malignancy, mass, mri, narcotics, New Year, pain, positive attitude, procedure, pufferfish, selfesteem, side effects, surgery, survival, treatment, uterine cancer, whining | Leave a comment
Okay, so I feel compelled to write this evening, and not for my usual prattling on about cancer, but because I’m a bit reflective and well, anyone who dances in hamster costume finds a special place in my heart.
See, I was lamenting how TV sucks tonight. Not that I ever really focus on it, it’s usually just on in the background unless it’s a new season of Sons of Anarchy. Then I am compelled to sit perfectly still in front of the brain sucker, tuning out the world until the credits roll. Okay, so maybe I pay a little attention to Dance Moms, but TV isn’t my focus here, or not exactly. I decided to watch “So You Think You Can Dance” – typically I dislike these shows immensely, because really, I don’t really think like “America” does, so I don’t watch “Idol” or things like the “X Factor” or “America’s Got Talent”. So anyway, I put this on, and I’ve been drawn to it to stop and watch it uninterrupted for a few minutes. It’s moved me a few times, and probably not in the ways you would think. Part of it was the commercial for the Dove self-esteem programs – how 6 of 10 girls stop doing what they love because of self-esteem issues. I was one of those pudgy little dancers. And I remember how knowing I was quite a bit chunkier than the other girls I had to dance with, including my quite tiny little sister made me so ridiculously self-conscious at the ages of 5 and 6 that it made me want to not dance. That fear of being judged for being larger and wanting to dance has stuck with me for a very long time. I dance in the house, I actually love to dance, but I don’t in public. I used to…back in the days when I felt “thin enough” but since Andy was born, I think I’ve danced once or twice in public. Part of it is that I need to feel moved by the music, and as you may have noticed from the C-Monster playlist, what moves me is radically different than what you would hear in most places that have dancing.
The dancing thing was only part of it…I marvel at male ballet dancers (and figure skaters)…I am jealous of the precision and strength of their moves. I admire their beauty. There’s a fierceness in male dancers that is not often present in women, perhaps because women are encouraged to be graceful and delicate, and not strong and aggressive. Be the white swan, not the black one. I would have always been the black swan.
I guess part of what prompted this entry was that today I was walking down the street, rocking the bald head. (So okay, maybe this is C-Monster related.) I’ve been feeling both confident and terrified by not covering the bald head. I know it’s not necessarily attractive, or even cute to most people. But every time I walk out into public with my bald head, it’s an exercise in overcoming fear. It’s me telling myself to stop being afraid to be judged, to be exposed, to be okay in my own skin. It’s a personal challenge. It may look brave, but inside I am arguing myself to wear a bandana or a hat…to hide the bald head so that people will only notice how fat I am, and not that I am fat and bald. I pause here to ask you to please not feel compelled to tell me beauty is on the inside and all that stuff, I know it, and I tell myself it all the time, and I am really not looking for affirmation that I am a good person. What I am trying to do is exorcise the memory from my head of being a little oompa-loompa in my ballet tutu, to stop the voice of the older boy in the neighborhood who used to call me fatty all the time and tease me because I couldn’t beat him racing up the hill. And all the names I’ve been called because I was a bit chubbier than other girls. And the ridiculous thing I did to lose weight to look like everyone else, when I’ve never wanted to be like anyone else, So today, when I was walking down the street and two women (who were not really in a position to judge anyone) started laughing and commenting on my naked head while sitting in their car at the light, it made me 5 years old again. This does not mean that I will cover the head , or not go outside – I see all these people looking at me and trying to process the head, but it does remind me that I still have work to do on feeling okay about who I am, and what I look like. It also reminds me that I need to let that childhood shit go.
People have been telling much how they admire my strength and humor and positivity throughout this adventure with the C-Monster. That makes me feel good – no one really knows that the only reason that I do what I do just to make sure I can get up and leave the house and keep going forward, because I know only too well how easy it would be to stay in bed and eat cookies and ice cream (when I can eat, that it). There’s been more than one time when I’ve been driving to or from Hershey that I’ve thought…why am I even doing this? What’s the point? It would be so much easier to just floor this car into a tree (DISCLAIMER: I am not now, nor will I be suicidal – but I also believe that people lie when they say that they have never even considered what it would be like to not wake up some days when everything seems so hard…I am not going to be one of those people…I think about it, but I would never have the strength it would take to do something like that…that’s right I said strength. Most people say people who kill themselves are cowards or weak. I don’t, but as usual that’s another entry.)All that said, I usually find something that turns it around for me. It’s not easy, but I spend a lot of time trying. It is really special to know that I make other people feel better about things, but it really is a selfish journey…I do it because I HAVE TO DO IT. I know I’m not done doing whatever it is that I’m in this life for…I’ve still got lessons to learn. I’ll know when it happens, but it hasn’t happened yet.
Back in the day when I had to go sit with a therapist once in a while to get my happy pills, I used to tell her that my head is like a closet full of shoeboxes. They all have stuff in them. Some are there forever and will never be opened. Ever. NEVER. Some are waiting for the right time, and others have been empty, analyzed and put back for storage…nothing gets tossed because it’s all important to who I am. When a shoebox is ready for me to look inside, it will let me know. This was a shoebox. I’ve picked through it now. I’m still gonna rock the bald head. It’s very comfortable not having hair.
As I finish this, I ran through my head all the things that other people have to deal with that are much more difficult than my cancer. People with family members sick and dying, people who are all alone in the world, people who have to deal with hate from their own families because of who they love, people who are bullied and tormented daily to make some other person feel better about themselves (but does it really?). One of my little clients asked me why I wasn’t going to cover my head after I saw them. I told her no – and she asked me if I wasn’t afraid that people were going to say hey you’re bald… I told her I didn’t care what other people think, that I was okay with my bald head, and that anyone who wasn’t comfortable with it, well that was their problem. I like to think I left her a little stronger and more confident in herself; unfortunately today taught me all too well that no matter how strong and confident you might feel most of the time, no one feels that way all the time. When you expose the real you to the world, you find that there will still be insensitive people who find pleasure at your expense, but you don’t learn to get back up if you’ve never been knocked to the ground. So bring it on.
Now my lovelies, I must away to my farming duties. The life of a farmer is hard; I have to plant and harvest more rainbows. Tomorrow is Friday hoo ray hoo ray. The beautiful and lovely Lina is coming to visit this weekend, and I have three days to rest and relax before another work weeks hops in front of me. Buenos Noches.
PS. I’m still only at 32 email subscribers, and still no trip to Disneyland or Car from Ellen.
PPS. Turn up the volume and watch this…