WARNING: Straight up, this is going to be graphic, probably long and definitely rambly. You might want to get a drink or snack now. Unless you are one of those weak stomach people, then don’t get the snack ’til later. I’m not going to give the warning again, so it would behoove you to skip this one if you don’t like to know all the details of what’s shaking with the pufferfish and the havoc it plays on my female anatomy. Additionally, there may or may not be morbid comments made about my demise, which I found particularly funny, and thus wanted to share. There may be political ranting and more unsolicited opinions which I will impose upon my readers. YOU HAVE BEEN WARNED AND CAN CLICK THE X NOW if you want to wait for an entry about ponies or fairy princesses.
But first I must offer a more detailed explanation for prolonged absence from the blogiverse (or rationalize my lack of motivation). See, right now I am sleeping on the couch, or rather I am occupying the couch 24/7. The reason for this is that the pufferfish requires that I sleep no more than two hours at a clip. There’s no way around it – I could not drink a thing for 12 hours and I would still need to get up and hit the bathroom. So because I get no extended sleep, I’m kinda tired. Really. So I take lots of naps. Sleeping on the couch forces me to get exercise by going up and down the steps at least twelve times a day, usually more. I need as much forced exercise as I can get. My new sleep habits and constant tiredness are also not conducive to doing things that require extended focus. So no matter how much I want to write, the whole getting the laptop and opening a file and all that seems like a ridiculous amount of work. Making a fucking hot pocket is a lot of work these days. Andy also got me a iPad for Christmas, so it much more convenient to dilly dally with that in the short wakeful periods than to get the lap top. Problem is that Apache’s Open Office, which is what I use for word processing, has no app for the iPad and I can’t write on the iPad I can do multiple virtual jigsaw puzzles, however, as well as use virtual coloring books. But I can’t write, and since I am leaving these files for Andy to publish if he wants after I am departed. I have to leave him some sort of legacy, because we all know my biggest financial accomplishment is the fact that I will be sticking the US Government with the balance of my student loans when time comes for me to go on disability or drop over. While my vast possession include a cache of craft supplies in case there’s a craftpocalypse, and multiple curious items and rocks, their value is more of a personal nature than monetary. It is at this juncture I will share the delightful conversation my beloved child and I had regarding the future the other morning when he came home from work:
Andy: What’s that?
Me: A record I got from Anxious and Angry and my new flexi.
Andy: You only got one?
Me: It’s not like you don’t get all this stuff when I am dead.
Andy: Speaking of that, suppose you prolong this and you don’t die for say, a long while, which is what I hope for, but, do I have to wait that long to get your vinyl collection?
Me: You can always borrow them, as long as you take care of them, if that’s the case. I’ve always let you borrow records.
Andy: Yeah, I know, but it’s still your stuff, I was just wondering when your stuff is my stuff. Not that I’m in any hurry or anything.
I am very glad we can have these refreshing conversations. But back to my excuses for the delays – sorry, I just didn’t have what it took to make the effort. I am feeling better today for the first time in a while. I spent an hour floating in an isolation tank at Art of Floating yesterday. There’s a 1000 pounds of Epsom salts dissolved in the water in the tank, and you just float in silent darkness. It’s like you are on a warm cloud. Very, very relaxing and it’s supposed to be very good for detoxifying your body, because of reverse osmosis where the salts in the water extract the toxins through your skin. Whatever, I just know I was jelly when I was driving home but by the time we got here, I was really sickish, which pissed me off a bit because I wanted to go to work today and I was afraid I would be sick again. But when I woke up today I felt pretty good – albeit tired as usual with the spewing in full swing, but no wretching and gagging. I made it to work, and even went grocery shopping. I am going to try to do the floating once every other week, so hopefully it will make me feel healthier. And while that was a real convoluted way to get to the fact that up until today, I didn’t feel like making the effort to write, and couple that with post holiday seasonal depression, if I lived in a rain forest, there would be moss growing on me. But here I am, full of snark and what not, ready to tell you all about the deatheaters and update you on the current state of my health with full graphically gross details (there would be pictures, but I don’t take my phone in the bathroom because I am afraid it will fall in the toilet). Aren’t you fabulously lucky?
Please also be advised that the new season of Vikings starts tomorrow. I will be unavailable on Thursday nights.
Now, back to this month’s doctors appointment, and it’s prequel, the CT scan. Back in January, I buzzed on down to Hershey for my scan. Now, since I was attacked and brutally tortured with tubes and catheters, when I go in for a scan, we now have to talk about my kidneys before I get the scan due to the contrast die they use. The technician decides to check my blood before giving me the dye, in case they have to decrease it. It only takes her a few minutes to come back and say there’s concerns with kidney function and they will just give me a low dose. This immediate turns on the freak out switch in my brain, because Dr. K constantly reminds me that if my kidneys aren’t 100%, he’s making me go back to urology. I will fight this tooth and nail because those two horrid months of the tubal torture when I had that stupid nephrostemy and catheter made me realize that I am not even considering that being part of my end of life scenario. I’ll get eaten by a shark first. Anyway, panic has set in. So I headed home so I could obsess about how long it would take for them to post the scan results so I could then also obsess about said results until I see the Dr. six days later. It took almost until like 1am to get them posted. And they were perplexing. Pufferfish was smaller, which was not surprising as it was constantly spewing nastiness, but as for tumors on my lungs, the one on the left disappeared, while the one on the right grew .5 cm. Which leads me to believe that these were not really tumors to begin with, but flies on the screen or spilled coffee. The scan says that the pufferfish is showing signs of necrosis and that there is no signs of the cancer spreading. I am familiar with the idea of necrosis as I have a weird interest in flesh eating bacteria as well as having watched an episode of House where House used maggots to eat away dead flesh on a patient. I am not sure that this is a good thing, but the more I read about it in tumors, the more it seemed like a good thing.
My research explained that necrosis in a tumor means the tumor has lost it’s blood supply and is now dying. This is good. The body has two processes for getting rid of dead cells and tissues – the normal one dissolves the dead stuff and it processes it through the blood and liver. And all is good. You can look the name of the process up, I can’t recall it right now. The process in necrosis is a tad different because it’s not a normal cell death, so the body turns the cells in to a blackish bloody pus that is the bane of my vagina right now. I should own stock in feminine hygiene products. What google’s sources of necrotic info didn’t tell me is that sometimes the cells and tissues don’t dissolve – they are just ejected. Cue arrival of the deatheaters. Slipsliding their way through whatever hole is or isn’t there in pufferfish, they slink their way out of my vagina like ghostly black boogers, or sometimes like larva or weird vein like creatures, or even more unnerving, things that look like curdled coke that sometimes happened when you made an ice cream soda. Understandably, the first few big ones make me a little nervous, but it’s not like I was in a lot of pain or anything.
I was feeling kinda positive when I headed to the Dr. on Monday, with my new found knowledge. My blood pressure was perfect, I wasn’t nodding off in the exam room, my appointment was only 45 minutes late, and the waiting room was actually not packed like a tin of whiny sardines. And I was early so I wasn’t even rushing. This semester’s minion came in and I told her about the deatheaters and all the other flotsam and jetsam being flushed out of pufferfish and she took appropriate notes. Then she went off to fetch Dr. K. He came in with my scan results and said “well, your cystic mass is smaller (yes, read the same report) and that we’ll just have to wait and see what happens. He assured me that things falling out of my vagina are okay. Unless it’s like an organ or something. As my cancer has been the exception rather than the rule, he can’t tell me what the pufferfish is going to do – in the best case scenario, it will be devoured by the deatheaters, and it will be purged from my body, and then we will focus on the lung tumors. It could also stop dying, or it could affect the surrounding organs. But it’s a good sign that I am a non-stop fountain of pus. So as Dr. K put it, we’re no worse, so that’s a plus. I know he’s trying not to give me false hope. I’m okay with that, and with the wait and see approach. In the meantime, I get to continue to take the dreaded chemo pills, particularly the hated Tamoxifen. Dr. K seems to think that this change in the activities of pufferfish is a result of the chemo pills, I choose to believe it was the use of herbal medication, turmeric tea and constant visualization that the pufferfish was turning into the black-hole of my pelvis and folding into nothingness. Either way, we”ll just keep visualizing it vanishing, and hope it doesn’t get creative. I don’t have to go back to the Dr. until April and then we’ll decide what’s next. In the meantime, every bathroom trip offers the opportunity to first hand examine rotting flesh as it’s spat from my body. Cancer, people talk about you like there’s nothing positive – hell, I am getting a live anatomy lesson daily. To help you get your head around what a deatheater looks like, picture a piece of spinach in a soup, it’s all feathery and floaty, except deatheaters are black and look like dementors from Harry Potter.
Fortunately, none of this is more painful that having cramps before your period. In fact, all of it’s very much like a period, except for my lack of a uterus and ovaries. It’s amazing the multiple shades, sizes, and behaviors of this decomposing flesh. The worst of it is it’s impact on my liver, which is fighting to filter grossness out of my blood and how exhausted that makes me. But as I told Dr. K, if this is the alternative to being stuck with tubes, and being in pain and having brutal pressure, I’ll take this 1000X.
And now, I am tired. My head feels much lighter. I’m even considering taking down the Christmas decorations, at least outside, this weekend. I’m still not much of social animal, my limit is like 2 hours, but visitors are always welcome at the house where Christmas puked. Social interaction is always welcome. I’m gonna go whip up a hot pocket and then snuggle in for a two hour nap. Send good mojo that the pufferfish is in its last days and that it stops when it’s done eating itself, and continues to push out deatheaters Enjoy your evening and remember the days are getting longer and spring is just little over a month away. Soon you will be blessed my annual obsession about spotting the first robin. Yes, yes, I know you can’t wait. Now be off.
17 February 16 | Categories: c-monster, Philosophizings, Random Rambling | Tags: anxiety, cancer, cyst, death, deatheaters, depression, doctors, flying monkeys, funny, hope, humor, necrosis, positive, pufferfish, sleep | Leave a comment
I went through and corrected my grammar and other errors in the light of day…sorry for the mess this was in it’s original state – it was late and I was, well..
It’s really not a surprise anymore, because it was part of yesterday’s blog entry, but it was still a surprise to the Dr. But I get ahead of myself here. Be warned, after I relay the story of my Dr. visit using words like vagina, mucus, and probing, I also get a little raw on what I am feeling. So if today isn’t a good day for you, or you don’t want me to kill your Christmas joy, come back and read this on a raw snowy day in February after listening to too much Morrissey and Elliott Smith and already want to put your head in an oven. (for those of you unfamiliar with that particular method of offing yourself, it requires a gas over with a blown-out pilot light. Not your electric oven. That’s called self-immolation.) Then you can get a real feel for it. But as you’ve been warned in the past, continuing to read this is at your own risk – you were warned. I have to purge the noise inside my head and heart.
So, after the horrible ride home with all the bloodshed, and my long-death-like sleep, Andy woke me up to ask if I called the ER yet – and in true sleepy mother fashion I lashed out like a tiger with a thorn in her paw and told him I’d find my own fucking ride to the ER if I needed to go, and if he needed to be somewhere to just fucking go. I was tired. And I went back to sleep. When I finally felt human again, I crawled from my crypt, er, couch, I called the Careline and relayed my story to the nurse on call for women’s health. At this point, I was back to spotting, and wasn’t really too worried. The nurse however, gave me a stern talking to about how when you start bleeding heavily when you shouldn’t be, you go to the ER. I didn’t even try to argue with her about why I couldn’t go the ER in Indiana or Ohio, because I don’t know what kind of doctors they might have there, and if they even have doctors there, or hospitals. Having had the tragic experience of going to Schuylkill Medical Center once instead of Hershey, I know how bad going to an unfamiliar ER can be. I just took my lecture quietly. Then she told me as long as it wasn’t heavy bleeding, I could wait until the morning to go see Dr. K. BUT if I got dizzy or sick or faint, I needed to go to the ER now. I agreed.
Then I went back to bed. My body refused to tolerate consciousness, and since I left my medication in Chicago, I was not a happy camper, even though there was backup at home. I got up bright and early on Monday, made some tea and then took on the challenge of getting an appointment on a clinic day, knowing I might just get sent to the ER. First three calls I got kicked to a voicemail box that was not the one I selected. So I called the Careline – the person who answered my call did not believe my story about being put into the wrong voicemail box, until she tried it and it happened to her. By this time it’s 9:30. She gets me to the right voice mail box, but as I leave my message I am a little nervous, because what if she doesn’t understand the urgency or she’s off sick. But I’ll wait a bit. By 10:30, I’ve still not heard from anyone, so I call back and get Victor. He puts me on hold to see if he could squeeze me in, and finds out that he can’t until he talks to Anne, my treatment coordinator. At this time, I realize I should have just called her directly, but I’ll wait. Around 1pm, I get a call back to be there for 3:15pm. Now that would seem like plenty of time but I still need a shower and Hershey is an hour away. Still I am out of the house by 2 and on my way. I actually get there early and need a water. The closest place to get water in the hospital is the Starbucks and the line is snaking it’s so long. So I just check in. That’s when the fun starts.
My Dr. used to be in the Women’s Health Building. It was always a mix of women seeing the Dr for an annual exam, the cancer women, and pregnant women, but at least we all were seeing the Dr. for the same general area. Now his office is in the Cancer Institute, which makes sense, but it also means the waiting room is almost always packed with people with all kinds of cancer and people waiting for lab work. Even at 3, it’s standing room only. Dr. K is a great doctor, he doesn’t rush, he talks to you like a person, and he actually cares. He’s also a surgeon. This means he runs late most of the time. Like an hour late. So I am not really all that surprised that I am waiting. It doesn’t really bother me, until the whiners start “what’s taking so long?” “my appointment was at 2, it’s 2:55” and “I don’t care, if he doesn’t see me in 15 minutes, I am leaving and too bad, I just won’t see him.” The last one was my favorite. Why wait? Leave now, make things go faster for the rest of us, and you’re so right, that will show him for making you wait, you have cancer and you clearly have an appointment with an excellent doctor, you’re so right, leaving and not getting examined or treated will show him. I realize that future visits will require headphones. Not only because I have to listen to whining, but because Faux News is the station of choice. The waiting room is clearing out, and I am happy to hear my name called around 4:20. Off we go to get weighed, which is surprising stable in spite of the ravenous hunger the Megase causes.
Once in the exam room, I realize there was a clear absence of minions. I thought they were on winter break. While I am waiting, I hear a discussion about Dr. K’s associate,if you remember, the one that wanted to put me on a psych hold? Apparently, she is not building a fan club because the discussion is about how the patient doesn’t like her at all and will go to a different hospital for treatment because of it and wants all her records transferred. I feel vindicated in my refusal to be seen by her again. The nurse takes my blood pressure – it’s off the charts, because I had to endure that stupid blood pressure machine. I tell her to come back again in 15 minutes and it will be normal. After the nurse leaves, I hear a knock and in comes a minion, well, a resident minion, not a student minion. I tell her my story and then she is off to confer with Dr. K. GRAPHIC DETAIL WARNING: What follows will be gross, but there’s no reason to pretty it up, so continue if you dare.
Dr. K arrives with minion in tow. He asks what happened and I tell him that I got tired of having the cyst drained all the time, so my body just decided to pop that pufferfish and let all the goop out. He seems a little surprised. Unfortunately, I can’t escape the probing exam due to bleeding. Dr. K asks if I am sure the fluid and blood are coming from my vagina. I tell him I am quite familiar with my vagina and yes, that’s where the gushing is coming from. I tell him it looks like the mucus-y blood goop that they drained out the last time and showed me in Radiation. I get warned that if I get dizzy or weak, I need to head to the ER, but he believes I am correct. He is not as cheerful about it as I would hope. I don’t know why I would think he would be, but I was a little let down that he was not as excited as I. Poking around in the darkness with probing tubes, Dr. K and the minion concur, the cyst has possibly eaten through or eroded my vagina. The good news is that it’s relieved all the pressure on my bladder and rectum, and that precious kidney, but the bad news is that there’s blood and there are other concerns that makes Dr. K get the serious face and tell me that let’s do another month on the chemo pills, and come back in January after the holiday and we will come up with a plan. He hugs me, and tells me to have a good holiday. His message is loud and clear. He does ask me how much I am troubled by the bleeding – I tell him if it’s a choice between blood and catheters, I’m going with blood every time. Before they found the first tumor I was literally hemorrhaging daily anyway. What’s a little bloody snot? He doesn’t think I need to worry about dying before the new year, so I’m okay with that. It’s now 5:30. I was going to get Indian takeout on the way home. I’m really no longer hungry. I am however grateful that the fucking pufferfish is no longer pressing against anything that will require scalpels and tubes to correct.
The waiting room is empty when I am leaving, except for the Christmas tree. I was the last patient of the day. It’s dark outside, and raining. I like dark and rainy, but it’s weird how the words sink in when I get in the car. Words like “eroded” or “eaten through.” Statements like “we’ll have to figure out what we’re going to do about this, and see what’s going on in there in January.” Threats of catheters. I had a much more positive outlook, like my body was done dealing with the puffer, and was pushing it out. Or that all that visualization about shrinking the cystic mass worked and my body was getting rid of the cancer. Never really went to the the “oh this is very bad, and not a good sign for me.” I mean I knew it wasn’t exactly a “good” thing, but I didn’t really go to “serious development.” There was no pain from the blowout, so that’s a plus. But sitting there in the car, I suddenly thought, what if this is the beginning of things moving to the end? What if my hopes that I can play this out for a few years more are going to come to screeching halt in January? What about the Riot Fest tickets I already bought? What if every thing I was planning over the next few months now has to be done now or it will never happen? The palliative care Dr. asked me what my line in the sand was – where I’d say no more treatment. I started to think about how I am not going to live out my remaining months sick in a hospital bed. I don’t want this to be my last Christmas. And while I know someone out there is thinking you have to be positive – thinking that isn’t being negative – it’s a totally legit fear. Sitting in my car, I was afraid. Afraid of running out of time before I’m ready. Afraid of my body failing me before I can do the things I need to.
And you start making lists of things you need to get done. It’s really numbing. I had to run to Giant to get a few things, and I just kinda wandered around. Then I headed home, trying not to focus on the dreaded bad words, but more on that it could be good, and to just enjoy the holiday. It wasn’t an easy ride home there was a lot of scringing on the way home (screaming+singing = scringing). And I hesitated on telling Andy anything negative. Not that there is any definitive negative, but I know my doctor and I know what he was saying without saying it – but I can’t just pretend it’s all glitter unicorns and dancing cupcakes. The ticking clock is always there..lately I had a few days of feeling almost normal, albeit crazy tired, and for the briefest of seconds I thought that maybe the cancer decided to enter remission. But then there were those motherfucking hawks. Dirty motherfucking hawks.
So since Monday, I am still bleeding. I go back to the Dr. on January 4th. On the plus side, if I lose enough blood, they will give me fresh stuff at the hospital, and I really, really, really enjoy getting new blood. No really, there’s no sarcasm there. I like a fresh pint now and again. The things you learn to enjoy when you have a cold uncaring tumor eating away at you from the inside. Jello. Blood. Headphones. I am kind of nervous for the bleeding to stop, because what if the reason it stops is because pufferfish has reformed and is going to resume blowing up again. But what if the gross ooze is actually doing more harm than good in flowing out of me? I mean Dr. K wasn’t too concerned, and in fact, was quite pleased, that his probing swab didn’t make me leap of the table screaming. That was, by his definition, a very good sign. So now I just sit around, leaking. I am trying my best to make the house of Christmas vomit a joy for Andy this year, even though he says he doesn’t care. I am even going to try and bake some of my amazing cookies this weekend. I am doing okay as long as I stay medicated and take lots of naps. (like the two I had writing this) I even made it into work for two hours today. I am mailing Christmas cards. So while life changes, it still stays the same. I’m not sad or depressed, just anxious and afraid – it will all work out as it has to, I just don’t want it to happen quickly. And just when Punk Rock Bowling is coming to Asbury Park.
Well this was much longer than I thought it would be. I still have several others to finish, but I think it’s bedtime for this monkey. We have almost located all the Christmas bins that Andy denies existing – I found 2 just this morning, but I am still missing the box with the dancing Santa lights, the bottom of the crystal tree, and the ice skating snowmen. I have a lot of Christmas shit even with the purge that has been going on all month. I did acquire a lovely black flamingo ornament for the white tree the other day. I’ll share some of the more charming ornaments with some photos on the ol’blog when all the trees are up, and the house looks like a magical forest. I do really enjoy overdoing the decorating. Who needs tasteful when you can have this beautiful Christmas disaster? Even the outside of the house is improved by my overdosing on lights – you can barely tell that the front porch is crumbling and collapsing. Andy better board up the porch before the skunks, raccoon and whatever else roams the town at night crawl into the basement through the holes.
And that my friends, is it for tonight. Hopefully I will find my way back before Christmas. Now I need to sleep sweet sleep. Buenas noches mi pequeño amigos cucaracha.
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
So here we are, 2:49 am. I’ve clipped my finger claws, restrung my mandala (someday I will figure out how a bead fell off and left me with 107 beads…and the bead that fell off, perfectly normal), took a stroll through the house, and had some quality time chatting with monka-monkey and zombie monkey, listened to three podcasts at Anxious and Angry (you should too) and gave some serious thought to laminating something. So I decided, hey, I’ll blog a bit.
There’s snow on the satellite dish, and I felt guilty asking Andy to go out on the roof and clear it off, so I’ll hope the sun comes out tomorrow, and melts it off. Today was a snow day…although I was already in the car on the way to work before I found out I could have stayed in bed and savored the warm comfy comforter. Needless to say I turned around and hit the grocery store, because naturally, it might be 24 hours before I could again go to the store and buy milk and bread. Or less, because quite frankly, the roads weren’t really too bad on my way home. So there was no TV all day. Not really a bad thing, but I couldn’t get motivated to read, so I started watching Helix on Netflix, and then a quite troubling movie called “Come Back to Me” (you should too). I planned a whole bunch of projects in my head that I will do someday when the energy returns to my body, ate some crackers, and then some more. Such a busy day. Right now, I’m busy hoping there’s a delay in the morning because I am clearly not going to get a lot to sleep.
My weekend plans have fallen apart. There’s a leak in pop’s furnace, which means he’s not going to go, so since taking pop to my brother’s house was the reason we were going, now means we’re not. I was lamenting remaining trapped in the tower, and I realized I have been too much of a whiner lately and need to refocus on being grateful, because quite frankly, so many other people are in far worse straights than I am – I still have a job, I work with a wonderful group of generous, kind, caring people who make being at work bearable. Andy has really stepped up and taken on the responsibility of paying most of the bills, as I have little bitty paychecks since I burned through my paid time off back in December (yay for paid snow days/delays!). We have heat, I have a bed, there’s food in the house, we have a house, a roof, clean running water, indoor plumbing. I have boots. A computer with internet access. I have health insurance, actually, I have excellent health insurance. I have a good education. I like myself, mostly, and I am comfortable being alone. I have multiple talents. I have a nicely shaped skull. I understand the secret language I talk to myself in. I’m kind, funny, and have a vast amount of useless knowledge. These things so far outweigh the negatives in my life, I sometimes get too caught up in those.
So is life hard? Yes. But it’s not the worst place I’ve ever been.
And with that said, I’m gonna try to hit the bed again, not because I think I can, but because my toes are cold.
And spring is only 14 days away. 14 days.
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
If you woke up to birds singing and cuddles and happiness, click that X in the top right corner and get the fuck out of here now. I’ll give you a few seconds to escape.
Still here? Well I am not responsible for how you feel all day if you read this. I’m giving you fair warning.
Okay, fine, the choice is yours, but you will be sorry. I am, and I am writing the shit.
I started having panic attacks yesterday. Serious sobbing, full on snot slinging, not enough tissues in this fucking box, I can’t catch my breath panic attacks. I am still having them, on a less severe scale than last night, but isn’t that how horror works? The most terrifying things live in the dark and no amount of light, sunlight, electric, candle, is gonna take the terror out of it.
I am still sick. I want to get the fuck out of this house today, and just go somewhere. Anywhere. No, not anywhere. An ocean – okay, Pacific ocean where my tears can get sucked into the gigantic vastness that oceans are. It seems like it’s been months since I got this news. It’s only five weeks, but it seems like forever. And all at once it seem like it all happened so fast. And here I sit again, with a fucking cancer garden dying deep inside of me. (That’s right you nasty poisonous bastard, you’re dying inside me, because you have no right to be there) It’s so very different this time – last time I was all like, okay stupid cancer, you will be gone in six months. The second time, you’re not so cocky. I mean, I was supposed to have made it past the recurrence window. This little monster sprouted and started taking over in a two month window. I know what my stage is, I know what my odds are, I know that it is definitely possible to win again, but it’s a 1000x more scary the second time. And a second time where they can’t just do in and cut it out like last time. I have to live with it inside, knowing that the only way it’s going anywhere is if the combination of chemo, positive energy and visualization of it vanishing make it go away. Stupid cancer. It takes so much more than your health.
Yeah, I am strong, and brave and have the guts to take this on again. But I am also a tearful mess who is so scared I am not gonna be around to see the way life is supposed to play out. What if I am not to see Andy get married? To see my grandbabies? To see my niece graduate or my nephews get married? I am not afraid of dying. I am afraid of what I’ll miss. What I thought was in my future and what might be so unfairly snatched away from me now. Oh sure, I know you’re thinking, well miss fucking sunshine, that’s not a very positive attitude! You’re right, it’s not, but it’s a very real one. It’s whats’ gnawing at the back of my mind 24 hours a day. Most people are afraid of dying – I’m not. I’m afraid of leaving. I know I will always be connected to the people in my life now, we’re all energy, we all are connected, but I am not done with this life yet. I have plans. I need to retire in Bali, I need to join the Peace Corps, I need to make a half-assed attempt at surfing, I have several more tattoos planned, I need to drive cross country and couch surf a few months on the west coast. I still want to get a PhD, and teach. I am not pleased that my plans are compromised by something completely out of my control. And in my mind, I rehash every doctor visit, every test result, every procedure and I wonder why the fuck I can’t win the lotto, but cancer II? I win that. How could it just show up like that? What did I do wrong? And believe me, I look back over my life, at every less that stellar choice or thought I had over the last several decades, and wonder what I am being punished for? It seems like every questionable thing I have ever done is being returned to me in the form of a nasty little parasite that is eating me up from the inside.
I didn’t even think it was possible for a human body to hold so much snot. Where does it come from? I am so scared this time. I have never been this scared. I feel like a caged animal. The chemo sick is so much harder this time – five days later and I am still tasting metal and not sure whether or not food is going to stay down. I am out of effexor – this is probably part of my non-stop panic attacks, I know I have a prescription bottle in this house somewhere that’s half full, but I can’t bend over to look for it, because I feel like hurling. Every joint in my body hurts, and motrin, tylenol and percocet are like a roulette wheel to see if one will actually help. I can’t get the weird chemo smell out of my nose, no matter how many bazillion times I blow it. I think my blood is part ginger now. It’s the only thing that keeps me from spending my day huddled over the bathroom sink. I lie down one minute and feel fine, and then in five minutes, my stomach is cramped up so much, that I want to unhinge my jaw and tear my stomach out. And, for comic relief, how about a post-chemo fart? Toxic clouds are less vile. Dick Cheney is less vile. As if you aren’t sick enough already, your body attempts to suffocate you in a noxious cloud at random points throughout the day.
At least the crying has slowed down. Blood tests tomorrow. Woo hoo. And I have two more weeks before I have to go through this nastiness again. I really feel for that 17 year old girl who wants to refuse her chemo – how is it more compassionate to put her through this when it’s not what she wants. I’ve already had the conversation about quality of life vs. quantity with Andy and my brothers – if it ever gets to that point, I’m cashing in my retirement, buying a surfboard, renting a car and driving to California, buying as many edibles as I can eat without freaking out in paranoia, paddling out and waiting for a great white to eat me after it mistakes me for an elephant seal. I am not dying in a hospital, all weak and sickly, it’s gonna be on my terms. Morbid, yes, but when have I truly not been? Really, I continue to watch Meet The Press, and I know how that’s gonna end every week, and yet I go back.
So next time you want to tell me how brave I am, or how strong, just remember that I am also a very scared and tearful little girl, wishing someone would save me from this monster. Facing this a second time is not about a fight, it’s about getting up everyday and doing what I have to keep from being paralyzed with fear. When I smile, it’s because I can’t rub my nose anymore or the skin is going to come off. When I make jokes, it’s because I’m scared and I need to find a way to cope. I’m gonna keep coping – I have to – it’s not time to give up. I’m not a survivor – that’s a fucking stupid word. I’m a person who has a fucking obstacle ahead – I may not overcome it, but I’m still gonna try. I’m also smart enough to know if at some point I have X years or months left, I’m not gonna waste that precious time trying to give me 10 extra sickly days, when I can have 5 days of fun. Look out Disneyland if that happens. Or Ireland. Or Bali. Or all three, and Peru.
You were warned to not read this. If you’re crying or horrified, that’s on you, not me. This is my blog. I have to face this shit down daily, and this is my process. This is how I sort through the rapid firing shit in my head that just won’t stop. You only have to read this once, and never again. I’ll be the one having a breakdown during Fairly Oddparents or Iron Man 3. I can’t promise that I won’t be maudlin or dramatic in the future either, but I can promise that I’ll do what I need to do to get through today, and tomorrow. Like my friend Debbie reminded me, these are the real feelings, these are what people with monsters inside them really do feel, and it’s ok. OMG, where is this fucking snot coming from???? It has to stop sometime!!
So that’s that. I’m gonna try to slog down another ginger tea. And check to see if my prescriptions are ready. And maybe take a drive. It’s a beautiful gloomy day out there, and if I can unswell my eyes, maybe I’ll go hang out among the dead for a few hours with my camera. Or do laundry. The mundane shit goes on, even when you’re having a meltdown.
Enjoy your Sunday, mes jolis canards aperçus! (use your google translate if you must know)
PS. To all of you wonderful friends, who call/text/message me to see if I need anything, thank you. Mostly I don’t need anything – I don’t really eat much lately but these are things that I always can use: Fresh turmeric root, Ginger-Honey Crystals, Reed’s Ginger Brew – Regular, Premium, or especially, Extra Ginger, Ginger Ice Cream, Anti-Viral Tissues, and bottled water – but not Arcadia or whatever the store brand at Boyer’s is – I don’t care what people say, water has different tastes depending on where it comes from. And sesame crackers. My food tastes are really different this time, and what I am hungry for can change hour to hour. If you are worried about Andy starving, don’t be, but if you insist on feeding him, there’s nothing the boy won’t eat except mushrooms. Well, he’ll even eat certain types of those, but he also gets random drug tests at work, so no thank you.
11 January 15 | Categories: c-monster, Philosophizings, Profound Insights, Random Rambling | Tags: anxiety, blackness, blood, cancer, chemo, chemotherapy, cyst, death, depression, diagnosis, disease, doctors, dying, endometrial cancer, family, fear, flying monkeys, food, ginger, hope, insight, malignancy, ocean, pain, panic, plans, procedure, sick, surgery, survival, toast, treatment, turmeric, uterine cancer | 3 Comments
Yeah, it was that kind of day. The kind of day you won’t forget and you hope will never come again. It’s still all very surreal, even though I have a folder with hard copies of all that went on and I can sign into the computer and see with my own eyes what I don’t really want to know. Stupid internet. S tupid body. Stupid cancer. You all suck.
I actually was early for my appointment today, even though I didn’t get out of the house as planned this morning. I skipped a coffee because I didn’t want to jack up my blood pressure which I anticipated as already being high due to anxiety. Surprisingly, blood pressure was perfectly normal. Better than ever, and I didn’t even take any pain meds this morning And I only gained a pound and a half in two weeks, which must have mostly come about last night when I was stuffing chocolate into my mouth with pretzels in order to create chocolate covered pretzels and then stuffing more feelings with a bag of sweet potato tortilla chips Yes, I wasn’t really hungry, yes, it made me sick, but the food just kept being shoved into my chomping jaws. Just like after my doctor’s appointment today when I tried to quell my emotional upheaval with taco bell and a banana milkshake at Sonic. As if it matters what I ate today, because tomorrow is chemo and I won’t want food for at least 4 or 5 days.
Okay, okay, I’ll cut to the chase. They didn’t have my MRI results posted last night or today. Dr. K came in to see me by himself, even though I heard the chattering minions whispering outside my exam room door. Not the best indicator. He looked at my MRI images on line and said he really didn’t see too much different from the last CT scan, and again went over the treatment options I had. I asked a few more questions this time, being that I was less in shock than last time – until he started talking about options. My beastly cancer-garden cyst is in a place that should he operate to remove it would cost me both my bladder and my rectum, because the pufferfish and friends are in close proximity to both and somewhat connected and that means they have to take anything that is possibly harboring mutated cells in the neighborhood. Fucking cancer. I don’t really need to elaborate on what the end result of that would look like, because I am not even entertaining that option. Even if he did surgery, there’s no guarantee that it would be a success, for a plethora of reasons including the fact that it would just delay chemo until my body healed, which would cost me time, and it would involve a very long healing time, and would be risky and very hard for me to recover from. Not to mention that it would change the quality of my life forever. He again explained why there’s not going to be any radiation, and discussed chemo versus anti-estrogen therapy. He remains positive that the ol’ c-monster will respond well to chemo, but really what else can you do but hope for the best? So after much sighing, he gave me a big hug, told me Anne would be in with my schedule and paperwork, and said he’d see me in three weeks. No minions today – they appeared to be a fresh batch because it was a new semester and I am sure he didn’t want to traumatize them too much on their first day in gynecological oncology.
Anne came in and more hugs ensued. And crying. And laughing. And she gave me my schedule and reminded me to pick up the good ol’ decadron and compazine so I would be prepared for poisoning tomorrow. She kindly color coded my schedule for me so I know when I have chemo, and dr. appointments and blood tests. Blood tests are going to be weekly this time because the radiation from last time has compromised my bone marrow and they want to make sure my blood counts stay where they should be. I also signed a release for blood transfusions. I got kinda excited about that, because fresh blood is a pretty good thing, I like when I get blood, it makes me all energized. We talked about herbal medicine for side effects and to compliment my treatment and I’m going to explore that with her okay. No zofran this time, just compazine to start for the nausea. She’s a great coach, and told me I did this once and I could do it again – the difference being this time the monster is still inside, and last time they cut the shit right out. And last time they took organs I was not longer using anyway. This time, I’d be missing parts I’m kinda fond of. Which again, not considering as an option. I’ll be seeing her pretty regularly at the ol’ Cancer Institute, as I go through this cycle. I also made sure I got my note saying that chemo would be poisoning me and I would be missing work. And a lovely catalog of hats with fake hair attached as if I am going to be seen sporting fake hair – if I want fake hair, I’ll draw it on with my sharpies. And off I went, to get my first of a bazillion blood draws. I did get a penguin sticker for my bravery during the blood draw. I am going to keep my stickers on my folder. My new rule is no sticker, no blood.
And in a repeat of two weeks ago, me and the phone returned to the car, and did our texting. And crying. Much shorter this time. I just wanted to get home, so I ran in to Karn’s and located both the delicious Halos and some Ginger Brew, so I can get through the next week. Then I comforted myself with the aforementioned taco bell and banana milkshake. It didn’t really work, but I did see my beloved pony-pony and that made me smile. He was hiding in the barn trying to stay out of the freezing wind. Another day out of the glue factory.
I was going to drive around for a while but I decided to just go home and curl up in bed and pretend none of this was happening. Of course, I had to check my online medical record when I got home, so I could add to the joy of this day by reading the MRI report. Apparently, pufferfish is now sporting two tumors, instead of one. Two. Two bloodsucking leech tumors. Two. The second one is 8cm long. The first is 10cm. So they aren’t exactly petite. Doesn’t change the treatment, but causes additional emotional damage. More crying, more curling up in a ball, more cursing my luck and trying to figure out what I did in a past life to be poor, fat, and get cancer in this one. Of course, as you can read, I’ve rebounded somewhat because I am writing about it. Cancer fact – every tumor after your first one is not only considered to be the same type of cancer as your first one, but also considered to be the same stage as the first, so they are all IIIB. Lucky lucky me. If only cancer was the powerball – I wouldn’t have won the jackpot, but I would have five numbers. Cancerpalooza.
So yeah, I am feeling sorry for myself. I’ll get up tomorrow and pull it together and get to chemo with my new skull blanket and some projects to keep me busy for the six hours of poisoning ahead. Cross your fingers that the weather folks are right this time and there’s no more than 3 inches of snow tomorrow. And that I don’t get the evil wicked winter plague that Andy has. And that there’s no more brutal wind. Oh there’s the bell saying take the decadron – be right back. Decadron pills are green. So now I take a pink, purple, green, white, yellow, red and white, and brown pill every day. If I start to take morphine again, I will add a blue one again. A rainbow of pills and no unicorn. So that was my day peeps, what did you do?
It’s time for me to load up the iPod with some podcasts and go down and make sure I turned the oven off because I actually made dinner since by the time I get through chemo sick, the roast would have been ready to throw away. I have to get up early again and pack my stuff. I know this wasn’t one of my funniest or most amusing entries, but hey, we have to take the bad with the good. I am sure chemo will be eventful. Apparently they have me scheduled for an infusion chair instead of a bed, and I am hoping that will change by tomorrow, because I am there for six hours, I should get a bed. I may or may not feel like writing tomorrow after all the fun, but I am sure I will be back in a few days, snarky and sarcastic as ever. As always, keep sending the good juju my way. And I’ll keep you entertained with these thrilling bloggy bits.
6 January 15 | Categories: c-monster, Philosophizings, Picture Perfect, Profound Insights, Random Rambling | Tags: amusement, anxiety, biopsy, cancer, carboplatin, chemo, chemotherapy, ct scan, cyst, death, depression, diagnosis, disease, doctors, flying monkeys, food, hope, hospital, mass, procedure, pufferfish, taxol, treatment, tumor | 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
Well, well, well, I’m back to write. I bet you’ve been wondering if you’d ever hear from me again. It’s been a long haul. I’ve been tempted to write a million times, but when you are on morphine 24 hours a day, you tend to lose interest in things you love, and/or lack the enthusiasm to finish things you start. It was like being in a fuzzy cloud, and one that didn’t feel all that awesome. I knew what was going on, could function, but sometimes my brain stopped dead, and I couldn’t remember what I was doing, or what I wanted to do. What was harder still, is because you “appear” normal, albeit somewhat slower than usual, people don’t quite grasp that you aren’t yourself in any way. Unfortunately, after the horrible experience in September, in which we attempted once again to thwart the pufferfish with drainage, that ultimately backfired and cause me unprecedented pain, I had to try and manage the pain in any way I could.
Until I couldn’t.
Some of you know what happened next, some of you don’t, and for those of you who are new to my blog, this is the true story of a girl and her pufferfish. And the tiny blue pills. And tears, lots of tears. It may be a two or three parter – I have a lot to write about and this morning I’ve decided I am not taking any more morphine, and just going to try to finish my withdrawal from opiates by weaning of the percocet instead – but that’s for the end of the story, and I’m jumping ahead.
It was the week of thanksgiving. I had to leave work early on Monday after court because I couldn’t even sit down – I was on the phone with an agency provider discussing a family and I was in such brutally punishing pain I wanted to scream, drop the phone, and run from the building. As she’s telling me about her concerns I’m fighting back the tears, and trying to get the attention of one of my coworkers to ask her if she could please take me home because I am not going to make it through the day unless I drug myself to sleep. Finally I just said, I’m sorry, I have to end this call, I’ll call you tomorrow and with the kindness of Momma Y, I made it to the sanctuary of my bed and sweet narcotic sleep. I made it through Tuesday, and Wednesday ended up being a ½ day snow day, so I had four days to try and recover. I spent all of thanksgiving in bed. I was supposed to go to my sister-in-laws, but I was suffering and it was best done alone and not in the company of others. My brother brought me food – I ate about two pieces of turkey and a few forkfuls of stuffing and spent most of my time in my bed asleep. On Monday, despite the lingering pain, I tried to convince myself I could go to work. I got up, dressed nicely, and headed off to the office. I made it until lunch time. I lined up some people to cover my on-call, (thank you Amanda and Kaylee, I know you probably don’t read this, but thank you anyway). I called the Dr.’s office that afternoon and they assured me my pain was likely constipation from the narcotics. I disagreed, but I agreed to follow their instructions. Without being totally graphic, it involved taking things to make my body expel waste. It mostly worked, but did nothing to alleviate my pain – it made me feel a little better at first, but that was short lived. I had to stay close to the bathroom – until things seemed to shut down completely. I mean stopped dead. I thought my body had just said no more.
Now it’s Wednesday morning. I wake Andy and tell him I need to go to the ER. We get in the car and I endure the horrific hour-long ride to Hershey. I could have gone to a local ER, but since all of my records are at Hershey and I trust them more, I suffered the trip. Luckily the ER is empty. The triage nurse takes my vitals, and we head off to an exam room – and as we turn the corner, we walk smack into a small group of hospital staff in haz-mat suits who will not allow us to go further – yes, haz-mat suits. They redirect us and the nurse assures me it’s just an Ebola drill, not really an Ebola outbreak but all joking aside, the way I was feeling, if expelling my internal organs in a bloody heap would stop the pain, I was down for it! We round the next corner, and bam! – more haz-mat suited peeps. No entrance. We reroute yet again and finally I am permitted to enter an exam room. The doc comes in, I tell the long sordid story of how I ended up here and my stupid ass pufferfish and tell them my pain is at an 8 after taking 15mg of morphine 3x a day and at least 4 percocet in the last six hours. He orders a CT scan and some dilaudid. Yay for dilaudid. Yay for CT scans. Yay for someone taking me seriously.
Now is when the story starts to get amusing/sad/disconcerting. I’m waiting for a CT scan. A new nurse comes in, a new doctor, another nurse, and every time I have to tell the story of how I came to be in the ER starting with my hysterscopy, hysterectomy and the c-monster treatment. I wait and wait for the CT scan. In the meantime, I get an IV started, and they ask me for a urine sample. I can’t pee. I haven’t drank anything in hours, and frankly, the last few weeks, I can’t pee on demand without pain and a short walk around the house first. So guess what I get? Yep! Catheter. And sad to say, I was perfectly okay with that because I was in so much pain, that couldn’t be much worse. Well apparently it is. But whatever, I am just glad I am in the hospital and they will make me well.
Finally, I’m off to radiology. I get a CT with contrast dye in a cool machine with Minion stickers. I am glad that Hershey understands the importance of stickers on the CT machine. It makes it so much more relaxing. The staff are great, they always joke with me and help take the edge off. Then it’s back to the room. Dr. #1 eventually comes back and tells me that gynecological oncology is looking at the film as there are some concerning developments and they will be over to talk to me because I may be admitted for surgery to day. Nervous at the word “concerning” but relieved that I am not crazy and relieved that there are changes in pufferfish, and that I am not just imagining it, I nod in understanding. It’s okay, the dilaudid is still working, and I’m sure I am going to find relief.
Understand that my doctor, Dr. K, has elected to take his family on vacation this week, so he is not privy to these developments, but they assure me his associate Dr. F will be over to talk to me. The door opens – enter two gynecological oncology minions – and no Dr. F. I ask if I will be gutted today – they say not likely, and proceed to examine me – they ask about my pain, and my use of colace and senna and what’s going on. I ask them about the CT scan – they say they didn’t really see too much of difference, the pufferfish is only “marginally” bigger and there’s a nodule now growing inside, and the fluid is clouding and not clear like it was, but they think it’s just because pufferfish ate the hematoma outside of it. I’m dying of thirst. I’m crying again trying to tell the story and explain my pain. They look at my stomach and notice some (old) bruises. I explain that I pushed again the banister trying eliminate the pain in my stomach, and could have possibly caused them. I also bump into the top of the banister frequently as well, which inevitably leaves a bruise. I am fat, I have a huge belly, I sometimes don’t negotiate well in the middle of the night when I am trying to get to the bathroom. They seem appalled at this. I don’t get it, but they assure me, they will be back shortly with Dr. F. They will have a plan. They are pretty sure I am going home today. They scurry out.
At this point, it’s noon. Andy has been patiently sitting with me, but he has to work tonight, so I try to get someone to come bring me home if I am not going to be admitted, so he can go home and get some sleep. When the minions and Dr. F don’t return by noon, dear sweet Paige agrees to fetch me home and I dismiss Andy. I am alone. Waiting. It’s now 5 hours in the ER. I continue to wait.
Enter Dr. F and the posse. She’s very nice. The dilaudid has worn off and no one asks about by pain level anymore. I can only lie on my side, but I roll onto my back for another exam. Dr. F talks about the CT scan – she says if I was her patient, she’d remove the pufferfish, but she has to wait for Dr. K to come back because I’m not her patient. Great. She uses words like sympathize and empathize and I tell her she has no clue what I am feeling because unless she has had chronic pain herself, she has absolutely no understanding. I need this thing out of me. It is causing me crushing pain, which she proceeds to dismiss as constipation, and tells me I just need to follow the colace/senna regimen for a few more days and it will go away, because my pain is now the result of massive amounts of narcotics, not the pufferfish. I disagree – it may be compounded by it, but it’s the pufferfish, it’s in my fucking body and I know what is hurting me. Then comes the most ridiculous part of the tale – she says her bigger concern is the bruising on my belly. She is concerned that I am trying hurt myself and tells me that she herself gets a little crazy with road rage from time to time and that she will be happy to allow me to stay overnight if I feel the need to be safe and talk to someone. Meltdown mode initiated. Eyeroll commences. I try not to react inappropriately, and through my tears, I tell her I do not need a mental health hold, I need someone to stop the pain. She says, no, no, she doesn’t think I have mental health issues, but just that she is afraid I am doing dangerous things to hurt myself because I can’t cope. I tell her that is insane. I was just trying to help relieve the pressure for a few minutes, because I couldn’t make the pain stop, even with all my pain meds. I don’t need to talk to someone about my pain or how my pain feels. It hurts and talking to someone about it, will not lessen it, extracting the pufferfish will. Thank you very much for thinking I am on the edge of a mental break down, but make my pain stop. She then proceeds to tell me that there’s really nothing they can do, so go home, keep taking pills, and come back and see Dr. K on Monday for my scheduled appointment. Really? 8 hours in the ER, and your response is, head on home and come back on Monday. Unless you want to spend a night on the psych ward, because sure, that’s gonna help. They will do nothing to help manage the pain, but they will help you talk about it. My response, no thank you, I will just go home and cry myself to sleep. Dr. F tells me she has ordered a suppository to help with the swelling in my rectal area. I ask if this will stop the pain – she says it might. Might. Yay. That’s fucking awesome. Another hour waiting for the suppository. 9 hours. I feel not one iota better than when I came in, in fact, I feel demoralized, frustrated, and now, starving. ER Fail.
It doesn’t get better. I go to the hospital cafeteria. I spy the special tandoori chicken wrap. Of course, it’s sold out. Why wouldn’t it be? Curry makes me feel better, so of course there isn’t anything curry flavored to help me. I choose a veggie brie and mushroom sandwich. The lady at that station is mostly ignoring me. Finally she acknowledges me and allows me to purchase some food. It’s cold. So now I have to figure out hot to warm it up. I find a microwave and make it lukewarm. I inhale it because I am starving and suck down a green juice. Sated, I head off to the lobby to await Paige’s arrival. Fortunately for me, there are screaming children in the lobby as well. And potential clients. I only want to go home. Home. I want to take a handful of pills and sleep. Please.Let.Me.Sleep. I could have had just as much success with treating my pain at home as I did here. Children continue screaming. Fucking hurray.
Paige arrives to rescue me and bring me home. I pass Andy on his way out to work, fill him in.
I can’t go back to work – I can’t sit or stand or lie on my back or stomach. I can lie on my side. Until that side goes numb and then I flip. Moving causes pain. Walking causes pain. Eating causes pain. Breathing does not cause pain, but allows me to remain alive, which causes pain. And my mind is still chewing at the fact that the only thing that was offered to help manage this pain was a psych hold.
The days pass waiting until Monday. Monday I see Dr. K. Monday Dr. K will fix me. I drift in and out of painful sleep, spend too much time in the bathroom in futile efforts and spend an equal amount of time rocking myself back and forth trying to make the pain stop.
Of course, this part of the story wouldn’t be quite complete without me sharing the fact that I also can see my CT scan as part of my health record. I can also read the summary. I see the words “potential malignancy” “node” “marginally larger”. Previously, pufferfriend was 10X11X9cm and today, it is 12X12X10cm. In one month. Now, yes, it seems like that’s not much, I mean it’s centimeters. Pufferfish is located in the pouch of Douglas (here’s where you google where that is). There’s this ancient torture device called the pear of anguish. It used to be inserted into the vagina or anus of the victim and then it was opened internally, mutilating them while causing unimaginable pain. It would be slowly increased in diameter to rip you apart from the inside (again, use your google skills for the detail) An 1 or 2 cm increase in the size of the pufferfish = 100 or 200% increase in pain. It’s no wonder that the morphine isn’t even touching this. It’s an internal wedge between my bladder and rectum and it’s making everything else compact so that it can take up the space. Fuck you “marginal” increase – it wouldn’t be so marginal inside of your uterine cavity or if someone started ramming a giant tree branch inside of you that just kept getting wider and wider. It’s like having a baby grow inside in a very wrong area, and without a reward at the end of nine months. I’ve had this thing longer than I carried Andy, I’ve had it longer than I had cancer treatment, I’ve had it too long. It must come out.
At this point my friends, I will pause and leave you hanging for the rest of the story. I don’t want to write a novel as an entry, and this shit’s already three pages long. I will tell you that things have improved somewhat, and will return with details tomorrow, because I know, you can’t even imagine not knowing the intimate details of what happens next. It’s no Sons of Anarchy finale, but if you like medical dramas, it’s all about that, both medical and dramatic. So enjoy chapter one, my friends, and I will return with my next installment tomorrow.
18 December 14 | Categories: Philosophizings, Profound Insights, Random Rambling | Tags: amusement, annoyances, anxiety, biopsy, cancer, cold. flying monkeys, ct scan, cyst, disease, doctors, happiness, home, hope, hospital, life, pain, peace, procedure, pufferfish, restless, sadness, surgery, writing | Leave a comment
I’m rewatching the most recent episode of Sons of Anarchy. I spent most of the day in bed – I’ve been spending most of this week in bed – due to the never ending pain that writhes through my body and my days like a nest of snakes. 12 days until I have another dr. visit, and hopefully find a stop gap for this stupid pain, other that 24/7 morphine with percocet chasers. So that’s why I’m not writing much – I hate the fact that my days are reduced to whining. I try hard to find beauty, be positive, laugh, but it’s a struggle and feels so fake – but I fake it anyway, because there’s no other way through. I keep reminding myself there’s a reason in all of this, a lesson, and I think back on the last time I was pain free like it was trip to Disney. I remind myself that life is suffering, that art takes pain, blah blah blah, but right now the only thing pain is doing for me is clouding my mind and making me sleep, and a sleep full of crazy mixed up dreams that leave me wondering what day it really is when I wake.
Yeah, I’m feeling sorry for my self. But in other news, this healthy eating thing seems to be working out. And some days I remember that I actually like eating things that are good for me. Even if they aren’t cookies.
I’ll find my way back here eventually – there’s too much in the world that I have opinions about not to.
1 November 14 | Categories: Philosophizings, Profound Insights, Random Rambling | Tags: amusement, annoyances, anxiety, challenge, cyst, depression, diagnosis, doctors, flying monkeys, funny, happiness, hope, humor, inspiration, life, mass, pain, positive, restless, sleep, squirrels | Leave a comment
I wanted a gyro for dinner. I was headed to Nesquehoning where there exists an alleged Arby’s that serves this coveted treat. Yes, I know it’s not a “real” gyro. But it’s tasty. And what I wanted. And I was hungry. It’s not really alleged. I’ve been there. And had said gyro. This time however, I was trying to find it from a completely different direction. Yes, I had my cell phone and I could have mapped that shit, but where’s the fun in that? I was going to guess where it was. Bam. Gyro is minutes away.
I know the road where the Arby’s is. I just need to find it. I’ve gone there on a back road before, and though it was in the middle of the night, and few lights or roadmarks were to be seen, (and it was two years ago) I believe I’ve retained enough details to easily locate my dinner with minimal difficulty. Of course I can. Toss in the added factor that I am on a long-acting narcotic, I’m tired and according to my treatment coordinator, it probably isn’t my best decision to be driving, I will still continue on this fool’s journey. I make the first turn of my adventure. Crossroad? Left, right, forward. Um. Left.
Here’s where I tell you that my sense of direction sucks. Which is why I also have a compass app on my phone as well as the maps app. Am I using either of these? No. That would only make sense. And there’s no need for sense on this road trip. I decide at the next intersection that a left turn is in order, because another left turn is probably required at some point, so let’s just go for it. It only takes a few miles on the road to realize I am driving in a direction that is probably directly opposite of where I would find Arby’s because I am on the side of a mountain. I know this is definitely where Arby’s is not. I suppose I could turn around, but I know I’m not going to. Because becoming lost in my attempt to find my way to dinner has just become the allegory of my life.
I can see how this has caught your attention. I will explain. I realize as I am driving along, that the scenery is gorgeous. I know I’m not headed in the right direction. I know what I should do is turn around and find my way back to what I know, but I’m not going to. I’m going to keep driving and see where I end up. The gorgeous autumn colors of the mountains have caught my attention. I’m not paying as close attention to the road as I probably should be because I am looking around. I’m pretty much alone on this road anyway. I spy a lake. I decide to tuck this nugget of knowledge into my “check that shit out another day” file, even though every fiber of my being wants to go see it now. I remind myself I am on a mission, and I am already headed in the wrong direction. My curiosity is forcing me to explore this new road. Normal people would turn around. Normal people would look at a map. Normal people would have looked at the map first. I am not normal people.
This has been my life. I know where I need to go, most times, even how to get there, or how to figure out how to get there. Sometimes I am on the right road, and make a wrong turn, or sometimes I am on the right road and let something else distract me, or sometimes I make a wrong turn right at the start. And instead of turning around and correcting my course, I just plunge headlong forward. I justify it in my head as “learning experience” – sometimes I get so lost that I never get to where I started, but in that journey I get so many lessons and rewards, as well as setbacks and deadends, that even when I fail (IE: no gyro for dinner) it’s okay, I’ll just make do with something else (IE: sucky Turkey Hill mini pizza). This has been my whole life. But so far, instead of enjoying the ride, I’ve been cursing my stubbornness and cursing the fact that I didn’t turn around. I forget what beautiful (and dangerous) things I’ve seen along the way. I forget that the success was in continuing to go forward, despite the obvious signs that this was not how I was supposed to go, but going ahead without reservation. Not traveling recklessly, like crossing into clearly the wrong lane, but sometimes driving onto the shoulder and suffering some bumps until I get back on the road. Sometimes traveling too fast and hitting a pothole that jars me back to reality. Sometimes just losing track of time that I miss out on something else. My life is a series of wrong turns that start off as trips to other places. I sometimes get to where I was going, but even when I don’t, even when I break down along the way, it’s an adventure, and I see a lot of cool things, and sometimes I learn the hard way that some chances aren’t going to work out.
So what did I see on my trip today? Beautiful scenery, gorgeous houses tucked in the woods. Log cabin. An amazing line of gnarled trees to go back to photograph another day. A lake to investigate, a new alternate route to a destination. Knowledge that next time it’s a right turn or straight ahead instead of left and left. Knowledge that Turkey Hill pizza sucks and that I shouldn’t have an energy drink if I am already cranky. Sunbeams. And the knowledge that I just need to keep driving.
So this is the lesson grasshoppers. It’s okay to use a map. That’s what they are there for. However, when you choose not to, you also choose to accept whatever the road you follow brings you to. Good or bad. Yummy gyro or nasty pizza. You can go probably go back for gyro another day, but if not, you can still have other delicious treats. Unless you refuse to let go of your desire for the gyro. This is all very zen.
I leave you with a picture of how you can take something ugly, like the stubs of dead bushes, and turn them into something magical. Or you can leave them like ugly remnants of another life – the choice is yours. Every time I see them I think of the great imagination it took to transform those dead sticks into a roadside coal reef to make the day brighter for every person who takes the time to notice it.
But wait, there’s more. There’s this tree.
It’s at the top of a hill. A hill in the middle of a cemetery. You can see death all around it, or a magnificent tree at the top of a gorgeous hill on a sunny afternoon – which leads me to this parting thought…I saw a retirement/nursing home today adjacent to a cemetery. It made me think about the home’s residents – does it trouble them, this reminder that their time is now so limited or is it comforting to have the constant reminder that every day is precious and that the reality of death keeps them focused on the present. Just a thought.
No news from the Dr. BTW. Pain is still my constant traveling companion. Always screaming for attention in the background. Hopefully tomorrow brings answers. But for now, it’s carnage and death, SOA style, my guiltiest of guilty pleasures.
Be well pretty ones. If you’ve got gyros – eat them.
30 September 14 | Categories: Philosophizings, Picture Perfect, Profound Insights, Random Rambling | Tags: anxiety, death, fear, flying monkeys, funny, happiness, hope, humor, life, pain, positive attitude, rant, thingsIlove | Leave a comment
First, I apologize. I’ve been lax about my blog. Not because I haven’t had anything to write, because I have, but like so many other people who write or draw or do creative things, occasionally you feel like you are boring your audience (even when your intended audience is yourself) and you can’t get excited about things as you used too. I’d blame depression, but for me, depression is often the one time I want to write because I don’t want to keep that chaos bottled up in my brain case. I didn’t want to bore anyone with my incessant whining. However humorous it often is. So I’ll recap, and then end with the current quagmire.
Picture it, Shenandoah in mid-July, 2014. We’re headed off to have the pufferfish poked and prodded and punctured and badness sucked from it’s soul. The day after the procedure I am stunned by the relief that comes after pufferfish is defeated. I revel in the painless days and nights – I don’t even touch the percocet or the Advil or the Tylenol. There’s no need – I am happy to frolic about without even an inkling of pain. I can eat with reckless abandon, and I do, nom nom nom, like a non-stop Miss Pac-man gobbling anything in sight. Yeah, yeah, I gain a few pounds, but hey, my body is functioning normally again. I am happy. My two year cancer free anniversary comes and goes, with nary a second thought because I am blissfully not being tortured by my body. I go to my one year radiology check, and gush at Dr. J about how not in pain I am. I do things like swim. Ahh, life is good.
At least it was. For a while.
About four weeks later, I start to notice subtle changes in the way my bladder is acting. I harken back to the days of pre-pufferfish-puncture and suspect that it may be returning. I try to pretend it’s not, I mean, hey, I’m not in pain. Changes keep happening, and I feel something pushing itself about in the great darkness. I’m pretty sure stupid fucking pufferfish is back, but hey, there’s still no pain, so perhaps I am just projecting the imaginary growth of a giant grapefruit sized squishy mass in the darkness of uterus-used-to-be land. Then, without warning, one Friday morning, at the hour of 4:30am, I awake in screeching agony. Welcome back pain, we’ve been waiting. I rock back and forth in bed, stuffing Advil into my mouth in between sobs, cursing the fact that I should have already called the Dr. After about, oh I don’t know, maybe 15-16 Advil, I am able to move without the shriek of a banshee. I head to work.
I should have called the Dr that day, but I didn’t. It could have just been a fluke. I would have preferred a fluke inside me instead of the pufferfish. I thought I should just test my theory. Just one more pain day, and I will call then. I swear it. I don’t know why I didn’t believe my body when it was clearly telling me what I already knew, but hey I never claimed I was the queen of good judgment Although the next two or three day were pain free, my body is never one to disappoint and BAM, pain’s back. Daily. I call the Dr. and in another week, I’m off for another CAT scan. I know what’s going on, but apparently, my word isn’t as convincing as a CT scan. There are still no cats at these scans, which is good because I don’t know if I can refrain from attacking one if I saw it considering the amount of pain I am in. I am eating Advil like it is candy. And there is only ONE, just ONE percocet left from this last prescription. I am saving it for that night when I seriously am weighing the option of self-surgery in which I remove the perpetrator of my pain myself and nail it to the wall. Then I will take it. That night comes pretty quickly and much to my glee, I realize that I have not paid close attention to the stash of narcotics because there are almost two left. There is one tablet, and a half and a quarter from another that I was clearly gnawing on at some time past. It’s an opiate miracle.
Now I am sure I mentioned before that my scans appear in my medical records long before I hear from my medical team. This time is no exception. I can clearly read that gargantuan sea creature has again returned and it trapped behind my bladder and on top of some nerves and is wedging itself snuggly in there to make sure it maximizes the torture experience. Oh, and this radiology student/resident/drwannabe has taken upon himself to decide that my spleen and pancreas are atrophied. What is this new development?!?! Away to Google we must.
Google at the ready, I enter this new information. As Google does, it gives me the most terrifying response one could expect…these are the first signs that the above referenced organs are affected by cancer. I know what pancreatic cancer means and that’s death. So, it’s 7 pm, there’s no Dr available, and I have just read in my CT scan results that I am not only full of the vile fishy torturer but I am facing death. Most of my friends try to talk me down. They know the perils of googling symptoms, but I will not be deterred. I know I am dying. FML. I will acknowledge that being the reader of several of these scan reports that say nothing else is wrong but the bloaty fishy in the past, that perhaps this new scan reader is an arrogant ass who just wanted to find something else the others did not. I agree to not make funeral plans until I hear from my Dr. And the longest 18 hours of my life begins.
Finally my treatment coordinator calls and leaves a message that I will be treated to another delightful out patient visit to radiology to have my friend puffy aspirated. It will be on Tuesday. No, it cannot be on Tuesday. I have training that Tuesday. I call back. We will reschedule, and I am told in no uncertain terms, to stop reading my own CT reports. Don’t worry about the spleen and pancreas until they do it with a contrast dye. And your new date of probing and poking is next Friday. I ask for a new prescription of percocet so if this repeats again, I will be ready – they say it will be ready for me at the procedure. Unfortunately, I am not going to make it without percocet until then, and I call on Tuesday, begging to be able to pick it up. I head to Hershey and retrieve my magical paper. I try to fill it at the hospital pharmacy, but it will take an hour! AN HOUR???? I don’t have an hour…so I take it to another nearby pharmacy and in just 30 minutes I am on my way to sweet fuzzy relief. I get home and sleep the sleep of the blessed poppies. I manage to avoid taking the magical tablets during the workday, but on Thursday night, the throbbing and stabbing are not quieted easily, and I head out for my procedure in drowsy narcotic haze.
Andy drives me to the hospital. I tell him to not even bother coming in with me, because I know the drill and I will just sleep till the designated pufferfish slaying time. He can reappear during my recovery period. I arrive and hop into my hospital bed. I tell the nurse that I had to take percocet before coming to the hospital and that I would like some more. Denied. They will talk to the Dr. and see if they can give me some pain meds during the procedure. The very kind and helpful nurse tells me they usually don’t give any pain meds because it’s not a painful procedure, I’ll just feel pressure. I sweetly tell her that this is my third go-round and I am feeling pain now, a six on the 1-10 scale, and there will be pain during the procedure, pressure is just a nice way of saying it will fucking hurt. I have gone through this twice, I know there will be pain. She assures me she will let the Dr. know this. She tells me I am lucky, Dr. S will be doing my procedure and he’s a great Dr. I am somewhat relieved. I relax as much as a person writhing in pain can until they wheel me into the procedure room. It’s a bait and switch. Dr. S. is there, but he’ll be supervising Dr. G, who will be the gutter of the day. I slide into the CT machine and there, inside the machine is that pufferfish sticker that mocks me every time I am there. I stare him down and mentally tell him he will not defeat me. Another kind nurse discusses what position I should be in, I just tell her how we do it. She promises me some fentynal. I like this nurse.
The procedure begins. I can tell from the start that it is not going as smoothly as the previous two. It feels rougher, less routine. Then I hear, from the twilight of my fentynal/whatever else is in that IV drip the ominous “oops, uh, not, not that, stop, okay” and some more rough movement toward the pufferfish. Yes, I am awake through all of this. I feel everything. The kind nurse with the fentynal asks if I am in pain. Seven I say, I am at seven. She ups the meds, and while it still hurts it’s not as bad. Soon, it’s over without any more issues, and I feel the relief that comes when the beast is defeated. There’s still pain, but it’s a different soreness and not monster eating my spine. And tomorrow I will feel nothing but a little ache. It’s totally worth it.
I hop back onto the hospital bed and get wheeled back to recovery. The nurse there lets me skip out early after Dr. G checks in on me. I told him I felt fine, because well, at that point, besides the achey soreness I did. They drained as much fluid this time as they did the last time. Hopefully this will be the last time I will have to endure this. I spot the cute male nurse from the last time. Hey wait, I’m not ready to go yet…
But I go. Saturday dawns and I’m still pretty sore. No problem, I’ll just stay in bed. Sunday morning and the sun’s shining on me. Still hurting. This is not right. But maybe it’s just because this is the third one. I’ll just wait and see, and sleep some more. Hey whoa, Monday’s here. PAIN. PAIN. What’s this???
Well, I’ll just give it until Wednesday. I mean no reason to jump to conclusions. Tuesday. Ditto with the pain thing. Not happy about this. But it’s SOA night, I’ll just rest. Hello OMFG-what-the-hell-is-wrong-with-me-and-who-replaced-my-hip-bones-with-jagged-razors-broken-glass-rusty-nails-Wednesday? That’s it. We’re calling Radiology. I call off work, I call radiology, Dr. G assures me that it’s a good thing that it’s just this razor pain and no fever, because at least I don’t have an infection. I can’t lift my leg over the bathtub to shower, but hey I won’t die of sepsis. Come on down for another CT scan, and we’ll see what’s up. We get there – I can barely stand up straight. I go down for the scan, they get me in quickly. I enter a new CAT scan room. The first thing I see staring at me is that mean pink bear from Toy Story III. This is a bad omen. It all goes okay until I have to get off the machine bed. I am in blood curdling screaming pain, and I am sobbing. The nurse helps me to the waiting room. After a short wait, a nurse comes in and tells me to call Dr. K., my gyn-oncology. It is not a positive sign that it’s not radiology that wants to talk to me. Now I’m scared.
They gave me a direct line to Dr. K. By the time he gets on the phone, I am crying out in the courtyard like a giant baby, a baby who is can’t sit because I am in so much pain. He tells me there’s a hematoma on my peritoneum from a vein being nicked during the deflation procedure. That’s why I feel like there are razors slicing me to ribbons. He wants to see if it will resolve itself. He is prescribing me a long lasting more powerful pain pill to take with the percocet. I ask if I can work, and he laughs, and says I shouldn’t even be worrying about work with this pain but yes, I can work, if I insist on it, but I should stay home a few days let the pills work. It’s a narcotic damn it. He says if it’s not better by Monday, we’ll figure something out. He doesn’t want to do surgery, not at all, because the pufferfish is in a deep awkward part of the uterine ocean, like the Marianas trench of uterine cavities. It will be a severe major surgery, and it won’t be easy, there are no guarantees that they will even get to it, or that it will resolve it. But we’ll talk in a few days. Take the pills. Rest. I tell him I will send Andy up to pick up the prescription and to tell the nurses to not be afraid to give the 20 something kid with the dreadlocks the powerful morphine prescription because his mom really is in the car. He laughs. I say, “you think I am kidding, I’m not.”
We get the prescription. While it’s getting filled, Andy tells me all the ways we can parlay the pills I am given into cash on the street, enough to supply oil all winter and have cash for a vacation after we sell them, and use that cash to buy some weed which we can sell and get more weed, and then…and then… I tell him they won’t let me have these meds in jail, and to stop making me laugh, because it fucking hurts. I slip one of these beautiful deep blue pearls into my mouth and we head home. Morphine Sulfate XR, bless you, as you cut quickly to the pain and make it just a grit your teeth and whistle level instead of the tearing your fingernails out one by one level. I spend most of the next few days asleep. And then I am told I should not be driving if I am taking the morphine and percocet. So with a note from the Dr. faxed to the office, the soonest I am going back to work is Monday. The next five days are fuzzy, I fall asleep randomly, sometimes with a sandwich in hand, and glasses on, or in the middle of typing a sentence. Sunday I try to wean off the morphine. My body’s response to that? You’re one crazy bitch, that’s not gonna happen. This brings us today – my hematoma is still here, my cyst is back to the size it was before they drained it, I can stay off the percocet, but my pain will not allow us to say no to morphine. And I’m waiting for word from the Dr. on what happens next. He’ll be back in the office tomorrow. The pain is manageable for now. And I keep telling myself at least it’s not cancer. And that I am grateful that at least some of my doctor’s trust me to know my body.
Thus ends the most recent chapter of Cancer, A Gift That Never Stops Giving. I am sorry for this novella, but now you’re on the same page as me, and we can wait, impatiently, together. I am headed to my bed now, to rest quietly and gear up to face tomorrow – I am applying again for FMLA, so that no matter where this is headed, I’ll still have a job to come back to. And this better not interfere with me being able to attend the upcoming adoption of one of my kidlets at work, because then I will be seriously pissed off at this nonsense. I’m not gonna let this noise interfere with the one good thing that comes out of the work I do.
It’s really hard to stay positive with life throwing up road hazards around every turn, but I keep reminding myself, I still wake up every morning and I get out of bed to clean water, and an inside toilet and electricity and food. So I am richer that most of the rest of the world. And I have cookies, so that’s just icing on the cake.
Stay healthy my friends, and keep fighting the good fight.
29 September 14 | Categories: Picture Perfect, Profound Insights, Random Rambling | Tags: amusement, anniversary, annoyances, anxiety, biopsy, buttercup, cancer, carnivorous kangaroo, ct scan, cyst, death, doctors, flying monkeys, happy, hope, insight, life, narcotics, pain, powerpuff girl, procedure, rant | Leave a comment
Just a quick update, because I feel like sometimes I just whine and I don’t feel like being that person today – it was a gorgeous early fall day with the blue-est of blue skies and a nice breeze. I made an awesome dinner and spent an hour or two with a good friend and things were progressing nicely. I was sorting through craft shit, had managed to get through another week of not overdrawing my checking account. The car is behaving nicely, I was making crafty things, laundry was getting done and I was, dare I say it, looking ahead to the future – what was next, trying to get past the fear of letting go of things and making huge changes without a safety next. Try to not let the world define me. You know, spiritual and philosophical advances and the like. Trying to find myself.
And the universe’s response to this?
Hey, guess what? Your landlord wants to sell the house you are living in. NOW.
Thank you, Universe. Apparently if I don’t make change quick enough – you will do it for me.
As to what’s next – who fucking knows? All I know is that I need to remember that anytime I feel comfortable in where I am at, and where things maybe going, that it’s all going to fall apart in a few hours so don’t even bother.
No worries – I’ve been here before, and I’ll get through again.
I’ll be spending the next few days cleaning, not that it’s going to make much of a difference in the way this place looks – but maybe that will be the motivation to downsize even more. Anyone who wants to come over for Disaster Fest 2014, feel free to text or call, and bring a hazmat suit cuz it’s gonna be ugly.
7 September 14 | Categories: Profound Insights, Random Rambling | Tags: anxiety, challenge, depression, family, flying monkeys, funny, gratitude, hope, humor, life, positive attitude | Leave a comment
I am so restless. Monday cannot come soon enough. I had to stop taking motrin last night because of its blood thinning properties, and I’m out of tylenol until later so I’ve been nibbling on percocet trying to make the pain go away. It’s not.
In an effort to distract me from writhing about in bed, bemoaning my situation, I decided to give cleaning out my closet a go. I applied the fifteen minute rule, and actually was at it nearly an hour. I got rid of a lot of things I won’t/don’t want to wear again. There are still some things I can’t get go of including the very Victorian/gothic long black dress I bought trying to hang on to my goth past, and a crushed red velvet mini dress from the same desperate period when I dreamed of returning to my glorious youth. I tried – I event took the black dress of the hanger, but in the end, I clutched it my hands, as my opiate-sotted brain harkened back to the days of pale skin and clove cigarettes and dancing wildly to Echo and the Bunnymen, the Jesus and Mary Chain, and Love and Rockets. Sigh. I realistically know that the dresses will hang in homage to my youth, never to be worn again, the same way there’s a pair of size 5 shorts in a box somewhere from when my short-lived border-line skeletal hips slipped them on one summer day following my high school graduation. Strange the things we treasure. Now, I’m lucky if I could get them over my ankles.
Even though the pain is still a constant ache despite the medication, the sedative effects are doing just fine. My eyes keep slipping closed and I should probably take a little nap because I’m going to head in to the den of babysnatchers to get a few more things done before I am off on Monday and Tuesday to have my procedure and biopsy done. They pushed the time back to 12:45p so a pathologist can be available when they retrieve the tiny chunks of flesh from SPFXL from snappy steel jaws that will be tearing them out of me. Of course, I don’t expect to have the pathology completed before I am released to go home, even though I secretly know they do because all they have to do is look at the sample and it’s either normal or it’s not. I don’t need to know how normal or abnormal the cells are, I just need to know one way or the other.
Not that it really matters, because as I was driving back from Pittsburgh on Thursday night, I was on Interstate 99, and if you have never been on it, there are 11 miles of the most beautiful stretch of highway I have been on, outside of Hwy 1, aka the Pacific Coast Highway, in California. The sun had just about set, the hills were green and purple and some of PA’s tallest rounded mountains were rising above the fog that was settling into the valleys amongst the farms and random houses spotting the countryside. It was so magically beautiful, I kept waiting for it to end, and each curve of the highway just became more breathtaking than the previous one. At one point, when the sun had almost sunk below the horizon, there was this lone cow standing next to a barbed wire fence on a hill close to the highway, silhouetted black against a violet twilight and I could not even remember when I saw something so simply marvelous. If I wasn’t moving along at 80mph, I would have hit the brakes and captured it on film. Fortunately, I can still picture it in my head. And I realized, after travelling 500+ miles that day, in the car, alone with my thoughts and in silence most of the car ride, that there’s nothing to fear, no matter what happens next. In that moment, it didn’t matter if I was going to live or die, because everything is connected and timeless. Yes, I had brief reminder of nirvana, one of those glimpses of what being human is all about, and why nothing is ever lost, why we are here, and why it matters, and that whatever comes is just another lesson for me to learn. It’s all going to be okay, even if it seems like it’s not. And I’m okay with that. I forget how strong I really am, and how much I have gone through and how I am so grateful for everything I’ve endured because generally speaking, it has made me the pretty fucking awesome person I am. And even all the not so positive bits, the parts of me I don’t like, are just challenges yet to overcome. Including the SPFXL.
So now that I have waxed philosophical for the day, I’m off to get ready to face the day and head into work to tackle a few things so I can come back after the probing and get back to the grind. Then it’s off to Presto’s 3rd Birthday Party. Have a great weekend, friends. And if I don’t check in before I’m rocking the CT scanner on Monday while I’m probed like an alien in a secret lab out at Area 51 in Arizona, send me some good vibes – especially that they have some good jello in the recovery area. Peace.
12 July 14 | Categories: Profound Insights, Random Rambling | Tags: anxiety, cancer, challenge, cyst, death, diagnosis, doctors, fear, flying monkeys, funny, gratitude, happiness, home, hope, humor, inspiration, life, mass, pain, positive, positive attitude, restless, squirrels, thingsIlove, treatment | 1 Comment
Who ever said ignorance is bliss should have a monument erected to them. I believe I would be so much happier if I was stupid. There’s a price to be paid for knowledge, and for having information at our fingertips on the internet.
I won’t belabor the issue – my most recent CT scan (yesterday) report appeared online last night. In addition to having a ridiculously low and almost non-existent level of thyroid hormone (I knew it was low, but this was way below the low end of the measurement scale) I had the joy of reading that the former pufferfish has, in less that four months, become superpufferfish xl. That’s right, the pelvic mass that we all thought was defeated in a previous episode has not only recovered but has evolved like a Pokemon, say like a Igglybuff transforms into a Jigglypuff (see images below). It is now the size of a pink grapefruit or softball instead of a common baseball. And being that it is a holiday, and my dear Dr. K is out of the office until Monday, and probably did not feel compelled to check my medical records at midnight as I did, will not see the transformation until Monday, and they are not going to call me until Tuesday. I know my treatment coordinator saw it, because she called me about the thyroid thing, and left a message about that, but nothing about the SPFXL (Superpufferfishxl). Back to the waiting for the news.
Of course, as is typical, I use the sacred interwebs to research this evolution. Things that grow so fast are often malignant. The only positive I can derive from my online inquiries is that there is no change in the nearby lymph nodes or other organs, which is a good sign. Whatever it is, I will deal with it, but I hate being in the no woman’s land of not knowing. I can feel it fighting with the other organs nearby for space, particularly my bladder and stomach, and it is annoying. Not to mention the pain it is inflicting by its inflation as it rests on the nerves in my lower spine and coccyx. (I should state that I love the work coccyx). Either way, it is going to be jabbed and poked and prodded with sharp needles and cutting tools, and it’s gonna mean that there’s gonna be no Riotfest in my future because I’m gonna have to take time off for hospital visits.
And I’m scared. That actually goes without saying. To deal with the fear, I’ve been binge eating because nothing conquers fear than a package of limeade oreos, Chinese food and coolattas. Which makes me more uncomfortable. But I am letting myself have the 4th of July to wallow in self-pity. Tomorrow I’ll take an extra effexor, and get out in the world and see some babies I don’t have to take away from selfish, self-absorbed and self-indulgent adults, and remember just how strong I am. And see fireworks. The world is a better place with fireworks. Or explosions. Explosions are good too.
Celebrate the day, my little firecrackers.
4 July 14 | Categories: Picture Perfect, Profound Insights, Random Rambling | Tags: anxiety, cancer, challenge, ct scan, cyst, death, diagnosis, doctors, endometrial cancer, fear, flying monkeys, funny, hope, humor, jigglypuff, life, mass, pain, pokemon, positive attitude, restless, treatment, uterine cancer | 4 Comments
Yeah, I started to write a blog on Saturday. I was full of joy and rage and fear and I was inspired; then I got way-laid, and tried again on Sunday, but then the joys of being a baby-snatcher intervened, and I had work to do. Then it was Dr. Day. And after enjoying a day full of describing and pointing and whining and diagnosing I got home and passed out and woke up at 11pm wondering why it was still dark at 6am, and once realizing it was not 6am, I ate a bundukie (lithuanian meatball, a delicacy) and trotted my sleepy butt back to bed. I didn’t even want to write tonight, but as I ate the last cold bundukie in the fridge, I felt compelled to share the events of yesterday with you, my faithful companions.
Yesterday was starting out pretty well, for Dr. Day. I won a necklace with a raffle ticket I bought at work, and was awarded my prize when I ran in to drop off the carseat I needed on Sunday. Then I buzzed up to court where the court hall patrol tried to halt me from seeing my client before I took the long drive to Hershey. But I could not be denied, and when he wasn’t looking, I grabbed a quick visit. Then I was off.
Of course, I should have known when I blew by the poor man who was lying on the side of Rte 209 that this was not a good sign. I barely even realized he was human until I did a double take and saw his hand waving. I pulled over as soon as it was safe to stop (not many pull-outs on 209) and called 911. I was stunned that I was the first person to call 911, because he looked like he was there a while. Once I saw someone else had stopped and that an ambulance was dispatched, I was on my way.
Being a good Samaritan made me late. Much to my glee, when I was finally called, I’d lost 16 pounds. Then the fun began. The nurse, who clearly did not read my chart as so often happens, asked me when my last period was. I told her it was when I last had a uterus and she gave that uncomfortable chuckle that finding out she didn’t read the chart always brings. She didn’t do any of the usual interrogation that my visits begin with. She tried telling me my blood pressure was high. Why do they insist on telling me my blood pressure is high, when it’s really not? Are they trying to see how long it will take to get it high? Fortunately, her painful encounter with me ended quickly and then it was onto the med student.
Her name was Sam. She had at least read the chart. I told her my symptoms and whined a while about pain and pressure and how I was sure there was some small animal lurking inside. Or a rock. It does really feel like a rock. A boulder. But it was probably the return of the pufferfish. And then she went out to see Dr. K. He came in ready for me to tell him I’m great. You would think I killed his puppy when I said, I have complaints, I believe my pufferfish is back. And then it got really fun. That’s right, you guessed it…we have to feel internally for the pufferfish, and then we have the med student feel for pufferfish, and then we go back in and jab the pufferfish and confirm that yes, there is a large mass in there. Does the fun end then? No of course not – we then poke me in the stomach and lower abdomen about a billion times and ask me if it hurts. YES, YES, YES! It fucking hurts. There and there and ESPECIALLY THERE. Take the pufferfish out I beg, or give me a scalpel and I’ll do it myself. No such luck. Dr. K makes a grumpy face. He does not like that there may be a return of the pufferfish, but gutting me is not going to be our first move. No. Not even close. I will be the lucky recipient of another CT scan, and once we determine that it is a pufferfish and not an invasive lionfish or even a barracuda, or perhaps a giant ball of chewed gum, we can choose an option. Most likely I will get to have another one of those great draining biopsies like last time, except this time, they will take chunks out of the pufferfish in multiple spots using an ultrasound machine. I will undoubtedly be awake again. No morphine, not sedatives to make me enjoy the whole event asleep. Woo hoo. And no fucking jello.
If it is a rock or a barracuda, we’ll explore other options. At this time we are not tolerating the idea that it is anything other than a return of the pufferfish, which will require a good poke with a sharp needle several times to make it go away.
You thought that was the end of the adventure, eh? Not so fast.
So Dr. K’s apprentice comes back and give me papers to checkout. And off I go. Only to get sent back to my exam room to wait for the nurse who does the surgical scheduling to get me over for a ct scan. Today if possible. She has me wait and while I am waiting I hear my treatment coordinator’s voice in the room across from mine talking to someone who has been told there is a contingent of rebel cells in her body that have created the dreaded C monster. I hear her being told she is on a schedule of 3 weeks on and 1 off and for 3 rounds. I want to cry for her. I hear the most feared words in the universe: Taxol and Carboplatin. And a cold chill runs down my spine. I can only imagine what stage she must be at, and I realize Dr. K was expecting me to be disease free to offset having to tell someone they are seriously ill and I really did kill his puppy.
The nurse comes back and tells me I’m due in the meat slicer with toy story stickers on Thursday at 12:45. And we’ll know on Tuesday what happens next and when that can be scheduled. And you thought that was it? No, I still have one more appointment today.
Off I go to visit a friend until the next appointment, which I believe is at 2:30. I am sure is at 2:30. So sure I didn’t even listen to my reminder message. And when I arrive at 2:20, I learn my appointment was at 1:50. I could have had a CT scan at 2:00 today, but I couldn’t because I had another appointment. Well now my appointment is at 3:10 because I missed my 1:50. I could have had a scan. I read my book, writhing in pain because the last 3 motrin have yet to kick in. Then I get ushered into the next exam room. No stickers. I read my book. I finally see the Dr. at 3:40. They take my blood pressure, which is NORMAL, but I’ve gained five pounds since this morning and all I ate was some cheese fries with honey mustard and a water. This is a female Dr. K. She’s a brandie-new Dr. She is excited that I came back to see her. She is glad to see the medication is keeping my blood pressure normal. I tell her I don’t take any medication, it’s always normal. Then I tell her about the problem of the pufferfish and what they plan to do about it. She asks me about 10 times if I see an oncologist or a gynecologist and I repeatedly confuse her when I say he’s a gynecological oncologist. And I’ve seen him for over 2 years. I tell her about the pain and now she thinks I have a kidney infection, and I have to talk her down from that. When I finally convince her I know my body better than she does because I’ve had it probably twice as long as she’s been alive, she lets go of the kidney infection diagnosis. But not until I show her EXACTLY when the pain is. Then she leaves me for about 30 minutes to confer with her attending. I’m still in pain. I’m trying to read to distract myself but all I can think about is how I want to go home and sleep the pain away. At least I don’t have to repeat this appointment for another six months. She knocks on the door and comes back in, and tells me they reviewed my blood tests from six months ago and it appears my thyroid level is really really low. I know this, I saw the results myself. Now she thinks that maybe I have too much medication for that and that is why I lost weight. I find this amusing because I’ve been taking this dose of meds for 18 months and weigh more now that I did when I started taking it. If anything, I need to have my dose increased. I don’t argue the point. I will let them take my blood. On Thursday. When I come back for the scan. Because I am tired, and anxious and need a Peanut Butter Cup Blizzard. Can I be excused?. She starts to insist I come back in six weeks for the results, and I tell her no, I see my endocrinologist in six weeks, so I’m good with six months. We agree, and I promise to lay off the lattes and try to walk more. And I am released into the sweltering summer afternoon.
And thus the two year check-up and Dr. Day ends. So I won’t be celebrating two years cancer-free yet. Keyword YET. Unfortunately I know there will be some sort of procedure because I can feel this thing myself from the outside, and it hurts. I’m gonna make sure there’s jello for this one, and if I have to have the same procedure again, I’m getting that stuffed animal too.
And there it is, the story of the two year Dr. visit, and a hiccup in the road. I’m gonna go creep into bed now and drift into air-conditioned comfort, and hope things are going better for that lady in the room across from me yesterday and that man on the side of the road. It’s a real reminder that things could always be worse. So sleep well friends, and enjoy tomorrow.
Yep, just sitting here doing the math on how much sleep I’ll get before I get up for work in the morning
It’s been a sort sucky day in a sorta sucky week, but if you harken back to last week’s dismal forecast, I’m sitting on top of the world in comparison. But it’s been a rough week and it’s only Wednesday.
I sometimes think I am so naïve. I always try to see the good in people. Even when people repeatedly disappoint me or take advantage of my compassion. This makes some people hard and callous, and I am, a little – but I still don’t let it color my perception of the next person down the road. This week was hard, because sometimes in the baby snatching world, you go above and beyond and put all your faith in someone because you see potential for success, and then despite every possible effort you could have made, things just collapse to a level lower than you could have expected. And yet, I was lying in bed thinking as upset as things have recently made me, somehow I can continue to find that hope. I suppose this all came from my listening to Ryan Young’s Anxious and Angry podcast. If you haven’t listened to it yet, you should. Because it will make you think. A lot. And laugh, also a lot. I will pause here to allow you to click on the hyperlink or here to get to the sight and listen to the podcast. Go ahead, I’ll wait.
Welcome back. I am sure you enjoyed it. Tell your friends. In this week’s episode, Ryan urges people to do one nice thing for people everyday and talks about how good it feels. I am far from being the kindest or nicest or generous person in the world (most brilliant, witty and craft are enough for me), in fact, I can be meaner than a honey badger, but I do always try to say one nice thing to someone every day. Or make them laugh. Something, and I do it without even thinking about it. Not because I want to be magnanimous but because I know how good it feels, and it’s a plain self-rewarding activity that makes me feel better about me. It takes nothing to say hey, I like your hair, or you look nice. And yet it means all the world to someone. I don’t know if I ever wrote about the story about the person who jumped from the Golden Gate Bridge in a suicide attempt, and survived. The person said that they told themselves, I’m going to kill myself, and hoped that one person would see the tears streaming down their face and ask what was wrong, and when one person stopped him and he thought, wow someone cares, only to find out it was a tourist who wanted him to take her picture. And he did, and gave the camera back and when the tourist walked away, he jumped off the bridge. One person could have made a difference. So I always try to smile and say something nice when I see someone, because I don’t ever want to ignore someone’s pain. Not that it works with everyone, but hey you put the effort out there. This is the same reason I buy stickers for the kids in my families for my visits. Because I might be the only person that month who gets down on their level and asks them to pick something they like when I see them on a visit. For those few minutes, they know someone cares.
Of course there are going to be kids who will hate me anyway, but that’s the same as adults in my life. Some people will never change. And just because I want them to be happy/succeed/prosper/stay healthy doesn’t mean that’s what they want. Like my sister, maybe she’s happy with her choices – maybe she doesn’t want more than to live in public housing, on disability, drinking. Why do I think she does? It’s funny how we both had/have diseases we have to fight, both have kids we love, and yet my path couldn’t be further from hers. (note to my readers: ironically, I have the reputation of being the bad one in my family – you know, the drug user with the older boyfriend ((which creeps me out now)) who was wasting her brain nightly in a small town hanging with the bad seeds, my sister on the other hand, was all your typical homecoming and spring queens, head cheerleader, great husband, money, kids) and while I have clearly failed at snatching me up a husband and having a white picket fence, I’m pretty comfortable in my nest. I tried for years to help my sister, until I just had to say, done! I’m not going to continue letting your refusal to want more drag me down. So she does her thing, and I do mine, and if she ever gets sober and honest, I’m still gonna welcome her back in my life. As for now, I don’t need that drama. (note: the previous reflection was the result of running into my sister in the city where I work, as I was entering a rehab for a work visit, and she was merely walking by it – again, irony.)
How does all of this related to my central theme here? I will tie it all together for you now – Jane is my sister, also sister of my brother Mike buys me a satellite radio → I hear Against Me! On the punk rock station → I go to see Against Me! → I want to see them again → they play w/ Off With Their Heads → I buy some OWTH downloads → I see OWTH play with AM! → OWTH’s music gets me through the roughest six month of my life with cancer -> Ryan Young is the vocalist of OWTH -> Ryan Young starts a podcast → podcast says do kind things → I blog. Of course in the midst of all that is some other stuff, but it’s all connect. Everything is connected so if you do something nice by way of OMG I THINK A SPIDER JUST RAN ACROSS MY BED…sorry… if you do something kind because you read this blog, then you will be connected not to just me, but that stealthy spider, Ryan Young, my brother, me, and even more people and things. What I am trying to say as I get more tired and ready for sleep, is that doing kind things is good, and it doesn’t even take any cash. Listen to Episode 13 of the podcast here.
Sorry I have been failing at amazing humor the last few weeks. I’m really trying to stop being so reflective. I was going to relay my bad experience with my mobile phone providers customer service today, but that will just get me all fired up again, so instead, I’m going to crawl into bed, read a few chapters in my new book “Horns” and hopefully fall asleep with my glasses on. Peace.
18 June 14 | Categories: Uncategorized | Tags: anxiety, cancer, death, depression, diagnosis, doctors, flying monkeys, funny, happiness, hope, humor, inspiration, music, positive, rant, restless, sleep, zerotohero | Leave a comment
So, massive doses of vitamin B, medication, meditation, and writing kept me from sinking into the sucking abyss. You can all go back to poking me with sticks without fear of my mental breakdown again. It’s something you can’t even explain, but I will try to – it’s like waking up one morning and you just don’t even care that you have no money, and no gas, and there’s nowhere in walking distance that you want to go, and the house is a mess, and you have a stack of bills, but that’s all okay, because you’re fine with just hanging out at home, and it isn’t even depressing. Like that giant safe that was dropped on your soul from forty stories above has been pushed off and you can breathe again, and think of sad things without having a sobbing meltdown. You eat things other than chocolate and ice cream. You don’t really care that you aren’t chasing every dream you ever had, you’re just happy that you don’t have to fight to get out of bed, that you are back to considering a future, and the physical feeling of drowning under the weight of your tears is gone. Boom. Like that. Even though I don’t have the power to turn my depression on and off like a switch, some times it comes and goes like someone else has the power to control it. It’s not like anything changed in my life to make it better, it’s just I woke up on a perfectly gloomy day, continued to do the same mundane things I always do, but suddenly, it wasn’t like physical torture anymore. And I am grateful for everyday it gets to stay this way.
This is a good thing because two year check up is in two weeks. I do believe my baby alien re-inflated itself after the last tortuous surgery, or at least that is what I am hoping. Actually, I’m not hoping that it did, I am just hoping that that is all that is wrong, because something is, and rather than whining about it, I’ve been just patiently waiting for the next day of probing to address it. It’s not like waiting a month would really make a big difference anyway, but I’ve got pain and weird sensations going on in ground zero and I know something is up. I’m pretty sure I’m still cancer-free, but I think that the poking around at the chrysalis in my former uterine cavity did little to eliminate the problem and was just a stop-gap, and at some point it’s gonna be either me, or a qualified surgeon, going in there with a knife and cutting that shit out. And if it is cancer, well, not much I can do about that except treat it – it’s not like it’s flesh eating bacteria or a bot-fly larva erupting from my skin. See? I come out of the darkness, and I’m all like, who gives a fuck? For the record, Vitamin B is nasty, but clearly works. Or I believe it works, and thus I prove the placebo effect valid once again.
Hopefully you are all breathing a sigh of relief at my return to normalcy. Normalcy is relative though, and I’m still pondering the secrets of the universe and scheming great schemes. Andy has agreed to go to Riot Fest with his mother, and I am buying his ticket for his birthday. The last time we went on vacation together was when he was five and we went to Disneyland for a week for his birthday – Riot Fest will be much like that trip, except, I won’t be charged with child abuse if I smack him in the head for being whiny. In other words, he will fall asleep in the car, whine about being hungry, complain about the music I am listening too, wander away and want to go in the opposite direction of wherever I want to go. And like when we went to Warped Tour to see AM! and Pennywise, he will spend all his money, and come looking for me only when he is covered in mud and has lost his shoes and is hungry. Mother and son bonding at its finest. If you want to join us, let me know – I will be staying in a hotel – he wants to stay in a tent – or the car – or on the ground – and as he will ditch me to see the bands he wants to see once inside the gate I will technically be alone. We’re driving because I love a good road trip. You can get tickets on layaway, which is the only reason we can afford it – because the universe has some sort of issue with me having a bank account with any sort of substantial balance in it (grasshopper).
Well friends, it’s almost time to make something for dinner. Maybe if you are lucky, I will make something amazing and you will be treated to pictures of it on FB. Have a great rest of the weekend, and Happy Father’s Day to all the wonderful dads out there, including my “son” Corey, and my dad, if he’s ever allowed to return from where he is being held hostage at my brother’s home (detention camp) in Maryland, and to all the moms out there who are filling in as dads. And the men who are like dads to the dad-less. Fight the power!
14 June 14 | Categories: Picture Perfect, Profound Insights, Random Rambling | Tags: dad, depression, disney, doctors, family, father, father's day, fear, festival, funny, happiness, hope, humor, inspiration, life, mass, music, positive, positive attitude, road trip, squirrels, vacation | Leave a comment
First, I’d like to just put my personal opinion out there: Ladies, I’ve grown used to seeing your naked pregnant bellies popping up in my newsfeed. I’m happy for you, I personally loved being pregnant. I do not however, have any desire to see your vagina. Not now, nor during childbirth or the 3d image of your unborn child. Babies grow in a dark womb for a reason, if we were to admire them during their spawning, they would mature outside of the darkness. I will see plenty of pictures of your offspring once it arrives, let me have the excitement of not knowing what it looks like before it’s done. Birth is a miracle, I know, but it’s a yucky, creepy, messy miracle, and if I wanted to see it every day, I would have become an obstetrician, instead of investing tens of thousands of dollars in a master’s degree in American Studies which I don’t use daily to earn the fear and hatred of scores of families as I invade their homes to protect their children from poor parenting. Please let me defer the joy of meeting your child on the interwebs until after they are detached from the placenta. Your cooperation is appreciated.
Advisory: I am still in the black void of depression. You’d probably be better served eating ice cream. Or watching Netflix. If you continue, please remember that this blog isn’t a cry for help or attention, it’s my therapy to work out the shit that’s in my head. I enjoy you sharing my world with me, but not because I need you to do anything about it.
Alas, the joy sucking depression continues to oppress me. I enjoyed another Saturday in bed yesterday, although I managed to leave the comfort of my completely uncomfortable bed to shop for food. Today I sprayed toxic chemicals in the shower. And tried to kill the giant fly that has invaded my space to torment me. I wake up crying. I peek out the window at the sun shining and wish for rain. I think about leaving the house and really only want to go sit in the peace and quiet of the cemetery so I can be one of those people that people visiting in the cemetery wonder why that person is sitting there in their car. It’s quiet there and there are very few people who will try to engage a stranger sitting in her car in a cemetery in casual conversation. Cemeteries also have squirrels and crows to entertain you. At least it’s out of the house.
One of the hardest parts of feeling like this is trying to get past the whole belief that it’s a mindset and not a chemical imbalance. Like I could somehow just think positive thoughts and shit would magically change. I want to believe this. I spend a lot of time thinking how much more fortunate I am than the people who lose people they love, have to hide who they are, are homeless, have physical disabilities, are dying. I see these stupid movies about people who are dying and have this great zeal to live every minute and all it does is make me feel bad that I can’t turn this shit off and be like that. Why can’t I just be enthusiastic about every fucking thing? And the self-loathing increases a hundred-fold. Because not
only am I in the throes of depression, I am a completed and abject failure because I live a fucking mediocre life and don’t do amazing things. Or even semi-good things. Or even things. Unless you count blogging and watching Snapped: Killer Couples marathons as things.
Ugh. I can honestly say that this isn’t the worst it’s ever been. I’ve been in far darker abysses (abyssi?) than this. I’ve hated happy people more bitterly and I’ve felt less human. I guess that could be considered a positive. Ironically, I continue to do some of my best life coaching for others while I hate everything about my own. I really want this fly to be dead. I really want no advice or consolation. I just want to go to sleep and wake up with enthusiasm to face the day. That’s not to say that I don’t have any desire to do things – one of the great benefits of depression is that in the attempt to escape the horror of one’s current predicament, one often finds themselves dreaming of what they should do to make their life better by choosing rather impractical solutions. Like quitting one’s job and buying a houseboat. Or a tiny house. Or taking to the road in a car and living in it. Or getting a dumpster and throwing everything you own into it. Or spending an inordinate amount of time on how to transform one’s life, because you know you have no desire to do it. Or doing digital jigsaw puzzles, hoping that this time, the picture won’t include some kitten that you just want to smash with a hammer. Or wishing you could live in a commune with people who laugh at your nerd jokes and want to talk about books and philosophy and raise organic vegetables and alpacas and pigs.
Ultimately, you get up, take your pills, suffer through another day, knowing that one morning this seemingly endless slog through the days will have ended, and you get an awesome day, where you laugh and cry and make amazing memories. And then you’ll have another hurdle tossed in front of you and another setback, but you’ll make it through, marveling that other people have lives that aren’t lived in spite of the blackness. In the meantime, I’ll feel guilty that I can’t be like other people and that the way I feel right now makes other people feel uncomfortable, and that I can’t just turn it off.
Or maybe I’ll take a shower. And move my contemplative angst all the way out to the front porch.
I came home this evening from hanging out next door with the Rooney’s, enjoying a glass of blueberry wine that I bought at the Pennsylvania Flavorfest, laughing til I cried while listening to Eric Rooney read some of my best impromptu poetry, including “Ode To Mikey” about his dead rabbit only to get some weird facebook message about pictures being posted of me on some ugly people website. At first I wanted to look, and then I decided not to, because one, I just had a weird vibe this was some sort of hacking activity, and two, because why would I subject myself to someone’s need to hurt me in that way (the link this person gave me had my name in it). This of course took the edge off my happy. I was about to launch into a rant hear about bullies and people who do ugly things like that. I was like, really, at my age who really hates me that much and has pictures of me that are, as the person who messaged me put it, disgusting. Whatever, nothing anyone else can say or do can cause me to feel worse about my body as I already do. So sorry mean people, I believe the word is “fail”.
What that little message did though, was make me realize, once again, that nothing is permanent. And maybe, I should take my own advice, and make a list of positives and negatives and see which wins out in the total score for the weekend.
Positive: Ryan Young actually had my email to him on his podcast (Episode Number 8, Anxious and Angry – Free on Itunes or here Anxious and Angry) You should download all of the episodes. They’re funny and interesting and will make you think.) He also said nice things about me. It made me happy.
Negative: I re-read my email and saw that not only did I use some poor grammar, my dumb ass fingers are still switching letters and my brain is still tricking me into thinking I typed one word when I really typed something else. So, if I have spelled things wrong or used the wrong words in sentences, my brain corrects things so I don’t catch it until days later when I re-read something, or in some cases, never.
Positive: I had an awesome Saturday with Kelly and her boys who are the most delightful littles ever. Rodney even performed a magic show with a rabbit in a hat. We had an awesome lunch and a semi-awesome milkshake. (Note to Sonic – Jalapeno Chocolate Shakes would be awesome if they did not have chunks of jalapeno getting stuck in the straw all the time. Find a way to fix that.)
Negative: There were so many chunks of jalapeno in my shake, I thought it was salsa.
Positive: I went to two impromptu barbecues today.
Negative: There’s none for this really. I had fun. played in the pool with Presto. wrote some side splitting poetry. Ate corn. Drank wine. Can’t really find a downside.
Negative: Andy was a served an arrest warrant for non-payment of parking tickets.
Positive: See above, because those unpaid tickets were mine, and the car is in his name.
Positive: I had three days off from work.
Negative: My weekend started with having to do something I hope I never would have to do and trying to prevent from happening for almost two years. This was a big negative. Huge. Unfortunate. Sad. Troubling. Some days, work sucks. The only minute, teensy-weensy upside was that I took care of it myself, and no one else had to do it.
Negative: I can’t sleep again.
Positive: You get to have one of my more boring, less comical, blog entries.
Honestly, I’m a little fired up about misogyny, murders, the internet, stupidity, gender inequality, remembering things I forgot to subtract from my bank account, the lack of breakfast food delivery services. I also hate my hair, the fat suit I am living in, the lack of motivation I have to do anything about it, social injustice, climate change and the fact that there is no IQ or other suitability test before people are allowed to use the internet. I need another week or three off. I got some bad news about a friend and my dad has some serious valve issues with his heart and I am not thrilled with the hospital he is choosing to address it.
However, I got an awesome hug on Friday from a little who wouldn’t let me go until the stress was all hugged out of me, I laughed a lot, I ate good food, I slept, I met an alpaca that was wearing sunglasses, convince a little that his magic wand turned a girl’s hair pink, got to re-live some of the fun that having little kids around brings to your life, spent some time with my niece and relaxed.
In other words, it was life. And tomorrow will also either suck or be awesome. Since it’s court day, probably more of the former and less of the latter, and I have the paper work from my unpleasant Friday surprise to deal with.
If your Tuesday is in need laughter, you should check out Ryan’s podcast, really. It may also make you sad, but again, see above, ie: life.
Be well my pretties. I wish I had flying monkeys.
I’m waiting for my laundry to get done so I can hang it up in order to be dry for the morning work. I suppose I should do this earlier in the evening, but I was unwinding from another troubling day of working for the man.
As you may or may not know, I finally made it to the ocean. The Atlantic, not the Pacific, but the sound and smell of the sea took cleared away a lot of things that can only be washed away by something so vast and timeless as the ocean. I needed that. For those of you who have not seen both, I have to be honest when I say the ocean in northern California is a far more powerful force, even on calm days, than the Atlantic in New Jersey. Not to mention that the shell selection is somewhat better, and there’s more beach glass, and sea otters and sea lions, maybe an elephant seal. But still, the ocean soothes a lot in me. And made for a delightful Mother’s Day, even though it meant spending much more money than I intended to. I am somehow okay with that though, because every cent was worth hanging out with my son and laughing. It reminded me of when he was a little, and we would take road trips and adventures to see and do things we hadn’t done before. I miss that. And I miss the spontaneity – not many people I know are willing to do things at the drop of a hat, and thanks to my excellent child rearing skills, Andy has that inherent spontaneous streak. The beach trip came about at breakfast when I said, hey let’s go to the beach, and he said okay, but I need to go change first. And within an hour, we were on our way. It reminded me of when he was just a toddler and we would be leave the house to head to work/daycare and I would look at him, call “mental health day” and he and I would head to the ocean. Or the zoo. Or a park.
And, as you may or may not know, during the beach trip, I learned some important information, which I believe should be shared. Large rocks at the beach are slippery if there is moss on them. Also, slippery without moss. Cement piers are also slippery, with or without moss. Women of my age should be careful on any of these things, lest they fall, as I did, and almost drown in the ocean/smash your camera/kill your ipod/get covered in blood, moss and sand. I also did some serious damage to my unscraped knee. It is getting better – but I keep thinking back to my fall, lying there like a giant beached pilot whale, flopping around as I tried to get up on the very slippery moss. Ah, a mother’s day to remember. My right leg looks like I was mauled by a demon too. Reminded me of the time I was going to showcase my mad skateboard skills for Andy and immediately had the deck shoot out from underneath me and I fell, slow-mo style, to the ground and smashed my head into the drive way. Days to remember.
Well, I do believe the laundry is ready for my attention. Tomorrow, or today, depending what time you are reading this is “hug-it-out-hump-day” and I encourage you to drop your inhibitions, invade the personal space of friends and coworkers and hug the shit out of them. They might scream or tell you that it is unwelcome or unwarranted, but deep inside, they want them. Don’t let the mace or threats of legal action deter you.
Good night my friends.
btw, the title comes from the fact that I had Yuengling Black and Tan ice cream, and I was blue because it was all gone. sigh.
14 May 14 | Categories: Random Rambling | Tags: challenge, family, fear, flying monkeys, funny, gratitude, hats, hope, humor, inspiration, music, pain, poetry, positive attitude, rant, restless, squirrels, thingsIlove | 2 Comments
So, there I was, prepared to lull you to sleep with my latest soul-searching foray and a treatise on forgiveness. And then I was about to dazzle you with my wit. However, my workday ended with negativity, so I feel it’s important to address that, so that my dreams are not a series of ways to work out my frustration (ie. murders). I won’t go into detail, but rather, share with you the wisdom that shook out of the no-good-very-bad-Tuesday-4:30-to-5:30 day (Read the book).
If one wants to have people believe they are sane, they must attempt to act it.
There are things you can tell everyone. There are things you can tell no one. Then there are things that you can tell everyone and yet no one will understand. Then there are things you can tell people OVER and OVER and OVER and they will never ever understand. All of this gives me a headache.
Why do the trees in the valley areas get their leaves before the trees at the top of the mountain? Isn’t the top of the mountain closest to the sun? (It is unnecessary to explain why to me, I know the answer, it was just a rhetorical question)
When you find a razor blade and want to put it somewhere safe, dropping it into a box of you craft tools will never be the safest place. Yes, you will find it, but it won’t ever be “safe” especially if you don’t remember it is in there. I should not be allowed to have razor blades in the first place. Or scissors, knives, needles, clippers, tacks, pins. Or matches.
Sometimes you have to just say “fuck it” and pin pictures of cupcakes and furniture made out of popsicle sticks for hours on twitter.
A salad will not make itself. And purchasing a pill box so you remember to take the pills you need to take daily is not effective if you fill it, put it in your bag, and then never take it out to take the pills. Pills will not take themselves. Despite what you “remember” from that one night back in ’99. (I have changed the name of the year, to protect the innocent, namely me)
Cars should have lasers. So you can cut people in half. If it’s necessary.
Peanut butter will be your best friend.
It’s not important to know what kind of bug it is, just that it’s dead.
You will always be thirstiest right when you sit down after forgetting to get that glass of water while you were up.
One day you will suddenly realize that you know longer think that people are talking about you when you aren’t included in the conversation. You will feel wonderfully liberated. I mean, other people think that too, right? I can’t be the only one who thought that.
Okay, that’s enough. Move along. Besos.
6 May 14 | Categories: Picture Perfect, Profound Insights, Random Rambling | Tags: books, flying monkeys, gratitude, hope, humor, inspiration, positive, positive attitude, rant, restless, thingsIlove | Leave a comment
I guess you expected another alphabet challenge entry. As predicted, I got to k, and have decided that for me, having to write with a prompt just is no bueno. I have too much going on in my head at any given moment to be limiting it to a single character to capture it all.
Ironically, the next letter I would have written about was the letter L. Which is the type of work I am avoiding right now as I blog instead. Legal. I should be preparing my court questions for my hearing tomorrow. Or completing affidavits. I loaded up the flash drive on Friday to get this work done over the weekend. I was all about about doing work at home. I was….really. That said, because I knew I was going to do paperwork, I made a ham, cleaned my bedroom, organized my yarn. organized my art supplies, read some magazines, drank coffee, made a scrumptious salad with the ham, did laundry, napped, stacked books, watched tv shows I tivo’d, surfed the internet, pinned some shit, and made four hats. Procrastination 1000, Work 0. I will eventually get to the work stuff…probably at 11, and then I’ll get up at 5 am to do some more, because as my fellow baby snatchers know, the night before court is one restless night. No matter how solid your testimony is, no matter how much you have prepared, if you have to be at court, it’s usually because you are about to make one of the parties unhappy. And baby snatchers are disliked enough without having to deliberately make people more miserable. That’s not to say what I do isn’t necessary, and in the interest of keeping kids safe, but it’s never like anyone is all like…”hey, it’s CYS, hey how ya doing? Good to see you, I was just saying, I wish CYS would come by and visit, and uncomplicate my life” “oh we’re going to court? And you are going to testify against me and argue why my kids aren’t safe in my care? Well, come on in and let me bring you some cake!” So anyway, that’s why I will be up all night, tossing and turning – already I’ve got the burning knot in my stomach – and I actually enjoy testifying. I can only imagine what it is like for my co-workers who are uncomfortable with it. At least I now have a computer that has all the necessary keys present on the key board and isn’t possessed, throwing the cursor around wherever it wants and devouring whole manuscripts never to be recovered from the hell files again.
Anyway, I was pretty fired up this morning when I realized that if I touched my computer I might be required to work, that I decided to wait a little and see if the passion subsided. As those of you who have delighted in my work for the last couple years know, I love to watch the Sunday morning political talk shows – specifically Meet the Press, and Face the Nation. If you have read this blog long enough, you will also know that I am a liberal of the worst kind…an uber bleeding heart socialist who believes that the wealth should shared in this country, guns are unnecessary, death penalty is inhumane, people come in all shades, sizes, languages, belief systems, gender identities (or not) and love who they love, kum-bi-yah (fill in the rest of the typical derogatory references to my political ideology here). I am also able to see past “belief systems” and see the person, which is why, despite my super left leanings, I also have a number of conservative friends who love me and I love as well. OH SHIT, I forgot to say I’m also a feminist with minor in women’s studies and a thesis on Feminism in the Colonial Period, which also makes me an intellectual elitist. For those of you still reading after this disclosure, I should also add I am fat and poor in material wealth, and also non-christian. Whew.
So back to Meet the Press. The recording artist,Will.i.am, was on Meet The Press today. He’s a big supporter of the power of education to change lives. He has his own foundation. Of course all the political shows were heavy with people of color due to that nut job Sterling, but Will.i.am was not playing into it. He asked the politicians on Meet the Press, why does our country not care about making our children the smartest in the world and emphasizing things like project based learning. Then the politicos would open their mouths, and based on their political leanings, would blame the lack of funding for education by the Right or the stomping on State’s Rights by the Left. Of course, Obamacare is also to blame. And the Christian Coalition.
Now, I suppose you’ve dozed off by now, but I will continue writing. Because here’s what I found fascinating. Will.i.am’s only question was why are we doing it, not who is to blame, and if we really want to foster American’s exceptionalism, why is it that we don’t capitalize on American creativity, and make it easier for our own citizens to get solid educations and hands on learning? He asked if we all believe in the same thing, then why don’t we do something to make it happen? And that’s when the light shone bright on how screwed up our nation is and why we border on the edge of the decline of Western Civilization. No one walks their talk. I find it hard to believe that every Republican politician believes in his or her heart that abortion is evil, we should let poor people starve, and that God should be forced into our education system. Nor do I believe that every Democrat believes that guns are the root of all evil, we should never say the word God in public and that socialism is the only answer. Yet, once we elect a “democrat” or a “republican” – they have to toe the party line and object to anything the other party asks for. No more acting for the good of the electorate. Make sure you don’t act outside your limitations. Don’t live your beliefs, adopt the beliefs of your party. And of course, it once again made me lose hope that anything will ever change, as the questions continued and each politician in turn, didn’t answer the question, but said why the other political party was foiling all of their ideas. And so another day, week, month, passes in America, and teachers are forced to teach kids to take tests, and try to squeeze actual learning and creativity in and around the indoctrination. Sigh. I did however, enjoy the jokes from the White House Correspondents Dinner, and yes, I am a science and political nerd. Add that to the list.
I have so many more things that have been brewing in my brain to write about, and were stymied by following rules. Not that it wasn’t a good idea to start with, and I learned some new words, but 26 letters, that’s a lot for one month. While I have your attention however, or if you just skipped to the last paragraph to pretend like you read this, I encourage you to go to iTunes and download Ryan Young’s Anxious and Angry podcast. In episode 4, he interviews P22, the California mountain lion with mange from eating poisoned rats. I wish I would have emailed a question, to find out why they call him P22, and not ML22. Seriously though, its a great podcast, with very interesting discussions it’s swell being able to listen to Ryan talk with his guests and find that their lives are not entirely different from our own. It’s also quite effective in calming you down when you want to explode with rage at coworkers. Not that I ever would, but sometimes I am seething on the inside, and I wonder if they can hear my thoughts. Or if sometimes my thoughts are actually coming out of my mouth in a mumbly sort of way. So go download it. You can do it here. You should probably buy something on the website too. I mean, he went after a mountain lion with mange to try and reunite it with its family. That should make you buy a shirt. And be careful with the box, because there may be a note inside that you might almost recycle because when you tore the box open to get your shirt and flexi out, you weren’t paying attention. (Thanks for the note Ryan! – I will let you know if the flexi did its job in July – Harsh Realms is one of my favorite songs from Heart Burns btw) And there’s a link to the Anxious and Angry website on the right sidebar too. Just in case you forget to go here.
Time to get my life together for work tomorrow…here’s a picture of the flexi and the awesome note I almost missed – I would have take a picture of the shirt too, but it’s currently in the spin part of the wash cycle…
Oh, and before I forget, I believe the birds nesting outside my window must be eagles – they came swooping and screeching down this morning…definitely not sparrows.
4 May 14 | Categories: A to Z challenge, Craftasms, Picture Perfect, Profound Insights, Random Rambling, Soapbox | Tags: a to z challenge, anxious and angry, atozchallenge, challenge, flexi disc, funny, gratitude, happiness, hats, hope, humor, inspiration, ipod, list, music, Off With Their Heads, OWTH, podcast, positive attitude, restless, Ryan Young, store, thingsIlove | Leave a comment
Sentences using today’s vocabulary words.
Last night was a great night for keraunoscopia.
Some times listening to music make me kantikoy.
Komodo dragons are really cool reptiles with supersharpteeth that tear things apart and have poison saliva.
Is that really his kickie-wickie?
Thus ends your vocabulary lesson for today. Write these words ten times each. There’s a test.
1 May 14 | Categories: A to Z challenge, Picture Perfect, Profound Insights, Random Rambling | Tags: a to z challenge, atozchallenge, books, flying monkeys, funny, happiness, hope, inspiration, positive, positive attitude, restless, squirrels, thingsIlove | 1 Comment