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 am sorry I am ignoring you, my peoples, I suck. Yesterday, it dawned on me that I am in the midst of a postchristmas depression in addition to the new stress on my body from the deatheaters, who will be discussed another day. There are a number of excuses I have made for not writing: I now have an iPad (how you iPhone people lived so long without swipe I don’t know) so in my waking hours I do virtual jigsaw puzzles, because I am too tired or too bitchy or too depressed or just want to stare at the Christmas trees. Yes, they are still up, and I am still enjoying them so bah. I have also ignored many craft projects, reading, laundry, showering unless I am going somewhere, and meditation. This is when I realized I am in the midst of a depressive episode. But it not the worst I have ever known, and I am probably through the worst of it. January is a cruel Month, and February is just about waiting for March to get here.
Anyway, I owe my blog an entry about the last CT scan and subsequent dr visit. It will happen, because the deatheaters are new to the story but the gist of the ct/visit was that the the puffer is smaller now that it drains 24/7 and it is being attacked by deatheaters, which is the positive news. Also a plus is that the tumor on my left lung vanished. On the downside, the tumor on my right lung is bigger, but with my strong faith in turmeric, positive imagery and the regular use of herbal medication, I believe we can work on that. We are now in a holding pattern – and the prognosis is status quo. No more likely to die than before so that’s a bonus. And while I piss and moan about the constant oozing from the pufferfish, and how it sucks the life out of me not just because my body is stressed by the constant inflammation, as well as whine because I cannot sleep for more than 2 hours at a time, so I sleep for like 90 minutes, get up to make a bathroom trip, medicate, and fall back to sleep for another 90 minutes, the fact is, the alternatives are much worse. But enough whining, I have access to Amazon prime and Hulu and HBO go, so I sleep through a lot of really bad horror movies. And with that I am off…be well friends , and I will look for some motivation.
Well happy people, it’s my birthday month. It’s also time for seasonal affective disorderr to rear its ugly head. The time of year when everything dies and I feel the urge to sing along with Morrissey and Elliott Smith. But surprisingly, increasing my antidepressant seems to have stayed the invasion of winter blackness for now. I tried taking my new dose for a few days, and it made my head feel all scrambly, so I decided I will alternate every other day, one old pill and one new pill. What, you say? How dare I disregard my physician’s instructions? I do it all the time – I know my body and brain better than any doctor, especially my brain, and it says I’m doing what I need to. Although it also was nice that my new palliative care doctor agreed with my method of medication administration.
Oh yeah, you want to know how that went, right? Surprisingly well. I really like the Dr. – she reminded me very much of my good friend Jess, with her manor and her tone, and I felt very comfortable. She was also very cool about my morbid sense of humor, and asked all the right questions without being intrusive. She is going to get me hooked up with a counselor who I can vent to on a semi-regular basis who will listen without trying to make me feel better and who will not give me “sad face” or pat my fucking arm. This is very comforting. We talked about end of life planning, what I should look for in terms of my disease taking a downturn, living wills, and what would be “my line in the sand” in terms of when I would say enough with treatment, and again, it’s quality over quantity. Her office will be the one I call for pain meds and if any new symptoms come up, or I want to discuss options for care. I got all the paperwork to make Andy my power of attorney and provide a living will – I hesitated to fill it out at first because I wanted to make sure he was okay with making those decisions. I don’t know who else I could trust with them – I don’t know how many people would honor what I want without question. Andy said he’s fine with it. All I know is that I don’t want to be come mean and miserable and trapped in a hospital bed to die. If I have no control like I did when they forced Dana inside and drilled a hole in my kidney, that’s one thing, but if there are options, I want to be in control of when and how I leave this particular life cycle. My biggest fear is to find myself unable to say “turn those fucking machines off’” and being a human vegetable. Okay, my biggest fear is being buried alive with clowns, but that’s my second fear.
I’m feeling better lately. I had a few days of a being a bit out of it after my flu shot. My joints are achy today, but I don’t know if it’s because of the flu shot or because I was cleaning in my lame, not a lot of energy way. I managed to clean a 4′ x 3′ area today, and do a load of laundry. I am getting better at throwing things away. You can’t even begin to understand what it’s like to have to think about holidays in the context of will I even be around to use this next year? Or things that I was saving for one reason or another, I now look at and say there’s really no reason to hang on to this anymore. It’s liberating and sad at the same time. Don’t get me wrong, I’m not miserable over it – it’s just thoughts and emotions and they are all just temporary. Just like not that long ago I didn’t even want to be awake, and I just kept reminding myself I only needed to get through today, until the blackness receded and I got my ass out of bed and started moving again. All I am hoping now is that: 1. They pull this tube on Tuesday and 2. That when they pull it I don’t end up in bed for 2 or 3 days like the last torture session. The benefit is on Saturday and I still have some straightening up to do, and jello shots to make. The California girls get here Friday, and then the fun starts. We’re going to Shady Maple on Saturday for breakfast before the benefit because those silly Mennonites don’t work on Sundays and they’re closed. Good times. Maybe this time I can get a stuffed black mamba or maybe a vampire deer for my collection. Hmmm, Paige is getting my scary baby collection after I’m dead, I wonder who have’ll dibs on the stuffed animal predator collection. I know Andy doesn’t really want a stuffed komodo dragon or wild african dog.
I try really hard when I am around people who give me sad face not to talk death. The problem is that it’s constantly on my mind. With that said, it’s not like it’s all doom and gloom and I’ve accepted that outcome as final and non-negotiable. I think anything is possible – I think about my stupid pufferfish every day and visualize it growing smaller and smaller and picture it vanishing. I think about how the human body is an amazing self-healing machine and if it’s meant to be, I’ll be around as long as it’s necessary to learn whatever I was supposed to learn in this life. There are no real certainties with this disease. I mean nothing was worse after cyst drainage – things actually improved with the departure of Dana and the impending tube removal. Yet you don’t ever stop thinking about what is happening in your body and trying to figure out was this something that you brought on yourself, or is it just one of life’s lessons. You start trying to figure out why this is happening to you. It’s such a rollercoaster and right now it’s like I am standing in line for my next go round.
Then there are the multitude of questions – am I doing enough? Should I get a third opinion? Maybe I should stop eating bacon and candy (gasp). More fruits. Veggies. Get back on my tea regimen. While I was checking in at the Cancer Institute the other day, there was a sweet old lady behind me who asked me about my OWTH hoodie – as we started talking we both discovered we were patients of Dr. K and both adored him. We started talking about second opinions and how it felt like we’d be cheating on Dr. K if we got one, but that people around us encouraged us too. She has had ovarian cancer for over 5 years – and it was nice to talk to someone who has a very similar stupid disease. We went our separate ways, she off to do blood work, and me, off to my appointment. I have to say I am not as fond of the new offices as I was of the old. Maybe because there are people with all sorts of cancers in the waiting room of the new offices, and some of them are very clearly very sick, and it reminds me of what is to come. I don’t want to be that person. It makes me uncomfortable. It also makes me glad that Dr. J left Hershey before I found out about the recurrence. I am glad he never needed to know that the cancer was back, and he got to leave thinking I was cancer free. Although I wonder if Dr. K ever mentioned it to him, since they were friends.
I know I am just rambling now. I want so badly to go to sleep but I had a bit of a row with Andy earlier and of course it was right before I was to fall asleep. Naturally, I got fired up and sleep wasn’t going to be coming anytime soon. Of course, he’s upstairs snoring, and I am down here trying to get my brain from firing on all cylinders so I too can snooze. I am both excited and stressed about the benefit on Saturday, and then the next week is my birthday. Of course, I want it to be a fun filled day, because I don’t know if there’ll be another one – in my gut I believe there will be, but I don’t want to wait to celebrate until I find out. I know this all sounds sort of sad, but trust me, I really am in mostly a good headspace right now – these are all just thoughts that I am stuck with every day, and they no longer are good or bad, just are. On the good news front though, Ranae’s mom had a pet scan and has no new cancer and can stop chemo – which is fabulous news. When I told Andy, he said, well let’s hope you’re next. Let’s hope. Today is one of those days where I feel I can face anything that is ahead. I appreciate these days because I know the other days when I feel like the floor has dropped out beneath me rip out my soul. If there’s one thing this fucking miserable disease does, it teaches you that there is a very broad spectrum of emotions and states of mind out there, and it will make you feel each and every one of them.
Okay, finally I feel like I can lie back down and curl up to sleep. So far the evil Tamoxifen is not giving me too much trouble with hot flashes. While I still get them, I believe the increased Effexor is keeping them in check. I still play the blanket game every night, and I still wake up damp with sweat every morning, but it’s not so bad during the day. The one thing I really hate about Tamoxifen is that it make my boobs bigger than they are. I really miss my perfect B cup boobs from the time before Andy. I hate slinging these things around, tucking them in to bras and then releasing them like Kraken when I get home and can take the boob harness off. But again, I should watch what I say before they become a source of pain and anxiety.
And now I must depart for my bed. I’ve finally watched all of Season 3 of Hemlock Grove, which just left me anxious for the next season and now I will have to wait for what seems like forever. So now I just watch reruns of last season’s Vikings and hope the new season starts soon. I’m still making pumpkin hats and making some cards tomorrow, and going to finish coffinizing the babies tomorrow. I’ve only got 8 more to go. I forgot how many I really had. Lots of babies. I did notice that one of my babies is missing her rat and another his bloody cleaver. And when I went to take them out of the storage bin, some of them had taken their shoes off. I wonder what was going on in there. I hope no one tries to steal one of them at the benefit – I’ll have to cut off their hands. I also thought about offering my gargoyle collection for table decorations – I forget how many creepy things I collect. So scurry off now, and enjoy your night or day, or afternoon, as will I – and keep sending the good vibes. And for those of you who send me cards, please continue – I love getting them in the mail, and they always seem to come at a time when I need them most – especially the ones from Jeanne. I’m sure I’ll be back later this week before this benefit to tell you all about how I was brutalized and made to cry by the kidney people when they go in after my tube. This time I’ll be taking the oxycodone with me. Delightful dreams my friend and happy adventures. Peace.
2 November 15 | Categories: c-monster, Philosophizings, Profound Insights, Random Rambling | Tags: afterlife, anxiety, benefit, c-monster, cancer, cards, carnivorous kangaroo, chemo, cyst, death, depression, endometrial cancer, flying monkeys, fun, kidney, medication, pain, pufferfish, sleep, uterine cancer | Leave a comment
Well here it is, Tuesday. I feel like I have slept most of this month away. I am up and awake now, before 10 am, out of bed, which is crazy, because the only reason I was getting out of bed before 10 am for the last three weeks was for dr. appointments and to puke. It feels strange and wonderful, and shaky. I’m craving a mint hot chocolate, but today is shower day, which I can’t take until Andy is awake to do a new bandage on my back.
So what’s new in my world? Lots and nothing. I’ve been down with the sickness pretty much every day. I feel better one day, and think I can actually be social and do things, and then someone is unknowingly carrying a rare virus that is usually defeated quickly by your immune system until it gets to me, and then hello, it’s a human with very little resistance, let’s dance. I am sure I’ve endured the black death the last few days, and probably some extinct pox. I’ve puked more in the last 30 days that I have in my whole entire life. And that’s with using appropriate nausea control techniques. And the things I have puked in and on are countless! Plus let’s not forget that tube in my back that gives me an added thrill every time my automatic nervous system spasms. It’s good times.
The tube in my kidney. What a pleasure source that bad boy is! I did get a mini-reprieve with it, though. When I went in for my tube change, I laid down my case for why it should come out, and almost won. But using logic, my plan was confounded. We agreed to leave a tube in, capping it off, sans the pee bag, for two weeks – if my kidney goes back to doing it’s job without complaint, then they will pull it. In the meantime, I’ve discovered the sweet spot on my hip where I need to place my hand when I need to cough, sneeze or breathe deeply, so I am not thwarted by pain.
But let’s talk about pain. Last Wednesday, I went in to interventional radiology to have the tube change done. I took a couple oxy and some medicinal herbiage before the ride so I’d be more comfortable when I got there. I was. Then they promised me some more medicine, when they did the procedure. Unlike the draining of the cyst, I don’t believe they give you any medication to help you be drowsy. No, they are very kind to you, promising pain relief until they wheel your ass in the procedure room. Then they tell you to get on your stomach, put your arms above your head and trust they will not hurt you. They lie. First they start poking you in the back with needles they claim are local anesthetics. Just a pinch they say. Just a pinch. Just a pinch of the claw of giant crustacean tearing into your flesh like it intends to eat you. I stay surprisingly still for the first two shots. Then the third hits a nerve or something and I elevate three feet from the table and mutter “ouch”. I think the team realizes that they might have hurt me. Now, I am shaking from the pain, and it’s freezing in there, so I shake for the rest of the procedure. They took out the old tubing and put a smaller less cumbersome tube apparatus in there. They did a really good job with the bandage. I get to roll back on my back and go to recovery. I’ve done really well they tell me. I just want to go home. They must have given me fentynal at some point because I’m mostly not in pain now. I get dressed and they even let me walk up to meet Andy.
I was hungry. I wanted one of those turkey and cranberry sandwiches from Panera. I went in with Andy at first, but realized I needed to be back in the car, so I gave him my order and went outside. He brought out the goods and I ate a cookie and some lemonade. I thought I was going to be fine. Just not really hungry. The sandwich could wait. Then the meds started to wear off. I didn’t bring any with me. In the next ten minutes, my pain went from 2 to 2.4 trillion. Every inch from my waist to my neck on the right side of my body was a fucking minefield of pain. I do not exaggerate when I say that speaking hurt me. Breathing hurt. Coughing was some primitive torture activity. I couldn’t cry, I couldn’t talk, I could only whimper like I was hit by a car and left alongside the road to die. I wanted to die. I wanted fucking morphine.
Finally we go home, I thought I was going to be okay. Then I tried to get out of the car and walk into the house. Every fucking step was a new adventure in torment. I got in the house, and faced the steps where my safe bed and vial of oxy were waiting for me just a few hundred steps away. And every step found me crying and moaning and doubting that I would ever get to the bed. But I did. I shoved some oxy in my mouth, and advil, and tried to smoke but couldn’t really inhale. Then I tried to lie down. That was not easy. I literally had to throw myself down on my right side and not move from that position. I told Andy if I didn’t get some relief in an hour, that we would need to call an ambulance. I was having really bad pain in my chest and back and I was scared it was serious. But I also tore cartilage in my chest before and it often would be painful if I was in a position that pulled at it again, so it could have also been that. I was hoping it was that. I nodded off for an hour and when I woke, I wasn’t in as much pain, so that was good. I was still paralyzed and unable to move, but I was no longer in fear of imminent death. Another four hours of sleep and I was almost able to move. By morning, I could actually sit up. A few more hours, and I could walk. Things were improving.
I couldn’t make my appointment with palliative care. Reschedule. I didn’t have the strength or the energy. I had to blow off the Bouncing Souls show that I was so looking forward to. I shouldn’t complain, my kidney was working and I could move and most of the time, breathe. I was still having trouble coughing and sneezing. Then the black wave of depression crept into the space where pain had been hanging out in my brain, and down, down, down, way fucking down, we went. If you don’t have depression, you can’t understand. I try to make it as visual for the untainted as I can, and this was like the La Brea tar pits of depression and I was a fucking woolly mammoth. It was all over except for suffocation. That sucking quicksand of sorrow ate me up, and the crying started. Without belaboring the incessant crying and snot-blowing, let’s just say thoughts during the breakdown run from “I’ve failed as a mother, and Andy will hate me for the rest of his life” to “what the fuck have I done with my life?” to “I’ll never get that PhD, great work dumbass.” Until you really spend a lot of time reflecting on your life and the possibility of a very short future, you can never understand that level of sorrow or failure. People can tell you otherwise for hours, but you can tear any positive self image down to smoldering ash in a matter of minutes when you start to consider things that will most likely never happen because there’s just not enough time. I’m just now starting to realize the psychological impact this disease has on me. I keep it together most days, but when this shit crumbles, it goes down hard and and fast.
I hate to keep harping on this but I feel I have to remind people that I write this to sort through what is in my head more than anything else. If the details of this fucking monster inside me helps someone else, I am thrilled, but writing is always for me. I love that people read it, I love that people comment on it, but I love the way I feel drained and empty when I stop writing, like all the shit that swirls in my head has finally been released or at least organized. Writing also scares me – when I see what I have only been thinking appear on the page it’s like tearing off a scab and wondering if it is ever going to stop bleeding. How raw this gets depends on how much pain I am in when I write – and sometimes I hold back because I can’t face another entry that is just all about my grief, and I know I shouldn’t. I can’t – because there’s no where else I can go with this. I know there are therapists, and I know I have friends, but let’s be honest here, very few people pour out what is really inside to anyone else, because we all want to keep our pain, our shame, our fears hidden. If you don’t, I admire you – I know I have secrets no one will ever know.
So now it’s evening – I went out for a bit today in the car. Visited work until I started to feel nauseous and then took a ride and spent some time in a cemetery until I felt better. Then I drove and cried and screamed and came home exhausted. Smoked my nausea away, and hoped for sleep, but no, my feet are twitchy and my legs are restless and so is my brain. Part of it is knowing that next Monday we’ll be talking treatment and progression (or hopefully, lack of progression) of this stupid C-monster and the damn pufferfish. And as many of you know, my friends are hosting a benefit for me on November 7th here. Some of my oldest and dearest friends from California are flying in and I am thrilled – it’s going to be amazing to see them all again. And I am sure many of my dear friends that live here will also be there and I am so blessed and grateful that they are doing this for me, but there’s a huge part of me that realized just now that it’s like saying goodbye to my loved ones and I don’t know that I am ready for that. I know that sounds negative, because anything can happen, and I do believe that, but I am also very much a realist who prepares for the worst, and the very thought of maybe never seeing them again after that weekend tears my fucking heart out. Just like every day that I wonder if I have told Andy every thing I want him to know – and hope that he knows that he changed my life and I love him more than I have loved anyone in my life. That, my friends, is my nightly terror – leaving my son alone in this world. I don’t care about anything else. I just want to make sure that my baby is going to be okay and that he knows how sorry I am that all this has landed in his lap during the time of his life when he should be discovering what he loves and who he is and he’s stuck taking care of me. And the tears flow again.
I was trying so hard to keep this light and fucking positive and I can see that that has been a huge fail. So much is undone. And you’ll think to yourself, well get out there and do it! And the reality is that there are somethings you don’t just “go out and do.” When faced with what you are going to do, you have to let go of the dreams you had that can’t possibly fulfill because it’s just not possible. And you grieve for all of them. So much grieving. And even as I type this I’m trying to self-talk myself calm – I want to bolt and stop writing because it hurts so much. But this kind of pain is progress. Unlike the physical pain – which is nothing more than annoying. And at this point, more of an annoyance than a hindrance. There’s that at least.
Well, I am spent for tonight. I’ve tried to enhance this post with some cemetery pictures from today. It didn’t work. Maybe I didn’t save them in the right format. Who knows. The featured image was supposed to be this crazy tree that is way at the back of a pretty hidden entrance to a cemetery I frequent. It always has artificial flowers attached to it. And it’s updated regularly for the season. I like to sneak into the cemetery that way so I can check out the tree. People don’t appreciate the subtle beauty hiding in the places most people ignore. I’m always going to find my happy in an interesting cemetery. It’s like water is to my soul. Maybe Saturday when we go to Philly, I can convince Andy that we need a stop at Laurel Hill…it’s such a beautiful place in the fall. Just so I can take a drive through and enjoy the trees and death and decay. I am going to head to sleep, so I wish you sweet dreams, cupcakes. Thank you and come again.
21 October 15 | Categories: c-monster, Philosophizings, Profound Insights, Random Rambling | Tags: afterlife, anxiety, benefit, cancer, cemetery, chemotherapy, cyst, death, depression, driving, endometrial cancer, fear, flying monkeys, friends, gratitude, pufferfish, sick, sleep, sorrow, tumor | Leave a comment
Ha! Tomorrow I go to interventional radiology to get my tube removed. So, ok, maybe they are referring to it as a tube change, but I am going to present a very well formulated argument about why it needs to come out. There are totally legit reasons, aside from the nagging pain and tugging hose. For example, my immune system is constantly on high alert preventing infection and trying to heal the holes in my back that don’t exist there normally. All that energy spent on fighting fungi and plagues and rare disease spores doesn’t give me much energy for anything else – I’m good for about a day a week. My immune system would benefit from a break and since my bladder provides me with nothing but happiness and joy these days, it’s clear emptying the guts from the pufferfish, was beneficial in relieving the hell of my pelvic region. So, using logic and reason, I have also deduced that my ureter is probably not being crushed any longer at this point in time, in which case, we can remove the hose from my back.
I apologize for my lack of writing – most of the last two weeks I have been horizontal, except for an afternoon in Hershey, and D4 last Friday. I just opened the computer for the first time since Friday. I’ve been subsisting on chocolate milk, crunchy Cheetos and mac and cheese – and a very delicious and fiery taco that Andy brought home from the taco truck he found. I have developed an unnatural addiction to chocolate milk in the last two weeks which must mean my body was lacking something. I had a few days where I plunged into darkness and cried endlessly and sporadically and could only sooth myself by taking long drives in the car and screaming in peaceful forests and valleys. I expect that will occur again after my Dr. visit on Thursday with palliative care. So I’m downloading some more music to my phone. And let’s not forget it’s FALL, which means things are dying everywhere and winter is coming and as we all know, this has never been a cheerful time for me emotionally, because not only is everything dying around me, the people who have meant the most to me who have gone to another place or body, left me in October or November. And then there’s all that turkey death. Dead, albeit delicious, turkeys everywhere. I hope I am up to cooking Thanksgiving dinner this year for the boy and I. Maybe we can have a thanksgiving picnic/food fight like we did when he was two. Good times.
Okay, I’m adequately drowsy now so I can get some sleep before it’s time to get on the road. I can’t have anything to eat or drink after 6 am, so I have to get up before then for my chocolate milk and toast. Or I’ll end up trying to bite a nurse when I get hungry and that never goes well. I’ll try and be more consistent about this blog. I mean I need to write more just for the sake of clearing out my head – I just have to be able to sit up to do it, and that’s been sketchy lately. Chemo never made me as weak and sick as I have been these last two weeks. I am just glad I kept the circle I infected very small because no one deserves to suffer like that. So my friends, and visitors, and passers thru, please send positive thoughts and vibes and animal/insect/fish/vegan sacrifices my way, so that the frankentube is history as of tomorrow. I promise more stories in the days to come. For real.
14 October 15 | Categories: c-monster, Philosophizings, Profound Insights | Tags: afterlife, cancer, death, depression, dying, endometrial cancer, fall, kidney, medication, nephrostemy, pufferfish, radiology, sadness, sick, sleep, tube | Leave a comment
All I want, more than anything else, is just one more morning where I wake up, and I don’t have to battle my body to try and feel normal. I want one more day, where the word “cancer” doesn’t cross my brain. One more day where everything I do or plan isn’t hampered by whether or not I can stand the pain or have to consider a doctor’s visit, or possible treatment. A night where I fall asleep without having to medicate first to grab an hour or two of “ok.”
I’m jealous of all those people who get this stupid diagnosis and then live their lives like there’s nothing stopping them. It’s not enough that I am physically unable to do shit, but my brain makes me feel like a failure because I can’t be one of those people doing amazing things like you read about on the internet, how people put this disease aside and make a difference. Maybe it’s the mortality thing, maybe when you know time is limited to make a difference, you feel guilty that you haven’t done enough. Instead of it being enough that I care about people and try to make everyone’s life brighter when I can, I feel like I suck at life because I haven’t rescued drowning puppies and made blankets for 100 sick kids. I can’t even fucking clean my house. I look around and feel like an abject failure at life.
Then there the fear that everything is the last time. I know people hate when I talk about being sick around them…the sad faces, the attempts at trying to cheer me up, the uncomfortableness, but it’s my reality. It’s in my head from the time I get up until I go to bed – can I get through work today? Will this be my last summer, is this the last time I will be celebrating Andy’s birthday? What about Halloween? Christmas? And worse than any of it, is the fear of what it’s going to be like if I start to get sicker. (I almost said when I get sicker, but I am trying to stay optimistic) What’s that gonna look like? Will I have the guts when I need to make hard choices? What about money? What about all this stuff that surrounds me? Do I get rid of it now or wait? And then there’s everyone who is trying to “help” me with information and opinions, which I know come out of love, but really, this is me people, do you think I don’t already do a ton of research on my own? I appreciate the thought, but I feel like I am doing what’s right for me right now…you may not agree with my choices, but their mine. Believe me, I do enough second guessing of myself for all of us. I go over the “what ifs” daily.
I am so fucking weepy these last few days. Yesterday sucked pain wise, physically and emotionally. I’ve been weepy all week, because I finally said out loud what is in my head through the day…how much longer do I have? It’s not like anyone knows right now. No one wants to hear that coming out of my mouth, but it’s my fucking reality. I try to be positive, I try to be hopeful, but when that stabbing stinging pain is there reminding me that the fucking pufferfish is still in the same spot doing it’s cancerous thing, it kind of spoils my fun. It’s the thinnest edge right now on whether or not I’m going to burst into tears at any moment. I know I’m depressed – I know I’m hormonally fucked up because of the Tamoxifen, and like I said before, I want just one more day where I am not a moody bitch, who feels like I am on fire one minute and freezing the next and hurting and tired. Like right now, as my body feels like I am in a fucking lobster pot. In five minutes, I’ll be looking for a blanket. And this will go on all night. AND IT”S NOT EVEN LIKE MY FAT IS MELTNG WHEN I AM ON FIRE…there’s no benefit to this whatsoever, except maybe the cancer fighting properties.
I’m terrified about Monday. I know the return of the pain is not a good sign, nor is the bloated feeling in my stomach. And after this Monday, I’ll live in fear for a week until I see the Dr. and hear what’s next. I couldn’t wait for this day to get here, so I could see if things improved, and now I’m dreading the waiting for hours after my scan to see the report. It’s a brutal double edged sword. I’m trying to focus on the fun things I have ahead. It’s just so hard some days to see anything good ahead. And it makes me feel like if I am just resting, I am wasting the time I have left.
So I’ve vented. I feel better, but now it’s time for some more pills. It seems like my phone is always reminding me it’s time for more pills. And I’m going to go look for a hotel for next weekend because I am going to rent me a car and go away by myself for a day or two, head out to the ocean and get right with the sea. One positive thing that had come from this is my new philosophy about buying things…before I buy something now, I ask myself, who will want this when I am dead? If the answer is no one, I don’t buy it. I’ve not purchased a lot of shit doing this…like when I almost bought the giant giraffe head grabber at the zoo. No one wants that shit but me, so I don’t need it. I’ll put the money to use doing something fun for me…like letting the ocean heal me.
Sorry for the ramble, but I took some pain meds when I couldn’t get rid of the stinging of the pufferfish any other way. My adult ADHD is particularly bad today, it’s taken me over two hours just to write this. I get distracted at every turn. I even went back and read a few older entries as I wrote this and stumbled across the post I wrote about getting my tattoo for being cancer free. Not anymore. But I sobbed and cried while typing and feel like I let go of some of my anxiety, so thanks for sticking around for the bipolar trip. Maybe on Friday, I’ll pull out my soapbox and write one of my biting social commentary entries. Dog knows, western civilization pisses me off daily.
Before I go, I forgot to mention a really special good thing that happened. I went to a “gotcha day” last Wednesday…one of the kids I have been working with since she was six weeks old was adopted. It was an amazing thing to do, be there to see the judge finalize the adoption, and know that because of me, I made sure this little person now has security and hope for the future. It was so cute when everyone was crying after the decree, the little person looked around and said “why everyone cry?” It was adorable. And a good feeling to hang onto in a job where there are very few happy days. I have one more little person who is on the cusp of being adopted as well, and hopefully I’ll get to still be at work long enough to see that happen, because that little deserves a shot at a great future too. I need to print out the picture and hang it at my desk so I can remember that what I do, does make a difference.
And now I’ll try again to sleep. I am exhausted – I tried sleeping when I got home, but it didn’t really work out. So I’ll try again. Until something shiny catches my eye. Or I start playing a game. Enjoy your night my friends, and thanks for bearing with my emotional rollercoaster, I know it’s not easy. Especially for me. Sweet dreams (or nightmares, should you prefer)
I’ve got my crankypants on today. I am on the verge of a breakdown, which I am eagerly anticipating since once I have it, I can get back to the business of being me. I almost typed normal, which I have never been, or will be. Even commercials are annoying on TV – especially the flonase one, in which I am told repeatedly that six is greater than one. Thank you very fucking much flonase. I know that the American education system is flawed in a lot of ways, but I am pretty sure anyone who ever attended school learned that six is greater than one. In fact, my guess is that unless a person was raised by wolves, EVERYONE knows that six is greater than one. I don’t need big pharma trying to sell their product to me with a condescending commercial. So fuck off Flonase.
And Snapple commercials – also fucking stupid. And any feminine hygiene commercials, except for those great commercials from a few years ago, where the woman mocked dancing and riding horses when a woman has her period. If you want to sell me you shit, appeal to my intellect, or make it direct, but don’t try to trick me. Again, I suppose it’s because I don’t consider myself a sheeple, that I think most of what I see or read is skewed and manipulated and trying to make me a mindless consumer. With this is mind, I have taken a new approach to shopping, from an article I recently read about living a more simple life, and death – when I am going to buy something, I am now going to ask myself, will anyone want this when I am dead? Because if not, I don’t need it, because people will only throw it out when I die.
These are the things keeping me awake besides the decadron tonight. And since I cannot escape the omnipresent thoughts about this fucking vicious monster inside me, you, my friends, will also be subjected to it until it either a: it goes into remission, or better yet, vanishes or b: I have a breakdown and stop stressing over it or c: I die. Yes, I said it – die. Because we all do, and since I see more and more people my age doing it, and because of a conversation I had with my old friend Anne, in which we realized that most of the people we hung around with / dated in high school are, well, dead, it’s been on my mind. And the tragic mess that is my house is also a reminder that should I die tomorrow, from this disease, some other medical issue, or from walking under a falling piano that Wylie Coyote was planning to drop on the Roadrunner, it could happen. There are journals to be shredded and/or burned, wills to be amended, and just other odd bits to be destroyed/discarded. I am not worried about what I put on Facebook or in this blog, because whatever I put on a computer will live forever. I used to think about that when I wrote in my journals, but there are some very dark times in years past, that are better left unread. Nothing that would enrich or improve anyone’s life. Of course, there’s a burn ban in effect in Schuylkill County for the next month, so it’s not like I can burn them right now anyway…but if you read this, and if I should die before the end of May, there’s one journal in my bedroom, and I think two are in the giant steamer chest in the living room with all of my photo albums and a copy of Madonna’s Sex book which I put in there because it would be too much trouble for Andy to move all the stuff on top of it to get in there and find it. Somebody get in there and destroy that shit ASAP once I am cold.
And while we are being candid here, I am gonna put this shit out there too, again because I am cranky and I am gonna be up for a few hours because the sucky decadron make me superhuman and amps up my anxiety x100 the night before what we are hoping is the last chemo for the next 20 or 30 years. When you have the stupid c-monster, or any other chronic disease, people will ask you how you are feeling? I really want to tell people how I feel, but most times you just say, fine, or tired, or great, and slap that stupid smile on your face, to make other people feel more comfortable. After the next two or three weeks, that might be true, but this deep into chemo, the answer I bite back is this: I feel like shit. I could sleep 24 hours a day, every day, except when it’s warm and sunny, and I want to go out somewhere but don’t feel up to driving myself. So I sit on the porch. I feel nauseous most of time (this is new, I have to eat every few hours or address the need to hurl with other treatments) and nothing that I eat or want to eat really tasted good. I have this weird smell in my nose that won’t go away. While my eyebrows have not completely fallen out, most of my eyelashes have and I wake up with my eyes crusted shut every morning and my greatest fear is that I will lose my excellent health care insurance because I will get too sick to go back to work and I will be reduced to substandard health care, or worse yet, medical assistance, and will not be able to afford getting well. I have weird pain, I forget shit all the time because of my chemo brain. And I am afraid every time I go to the doctor that I will get bad news and have to continue with my treatments indefinitely. That’s how I am feeling – how are you? But you don’t get to say that. (sorry I know I’ve said this all before, I apologize for the redundancy. No, not really, this is my fucking blog and since the only people here in the house to talk to at this time at night have their eyes permanently sewn open and their mouths sewn shut, there’s a lack on interactive conversation.) Random thought: Does Chris Isaak even write music anymore? You never hear about him anymore. That’s what I need, I playlist with Chris Isaak, Morrissey and Elliott Smith, with a dash of Jesus and Mary Chain circa Darklands tossed in there and I would never leave my bed again.
Yes, it’s true I am feeling sorry for myself. I am scared to death of what’s to come in the next month. I am scared that I will need to have more chemo. I am scared that the scans will show something I don’t want to know. I am not a fan of this nonsense at all. I’d prefer to lie in bed sleeping all day because I am just a lazy cow instead of it not being my choice to do nothing. I would prefer to go through life not thinking at all about whether or not I am going to have to have treatment again. It’s so not fair. I long for the days when staying my jammies all day was a decision, and not because I am too weak to get dressed. I want to enjoy a shower, not dread the exhaustion that follows. I want to look forward to cooking, not just pray I can find something that tastes good and requires minimal exertion on my part. I want to enjoy drinking water, and not fear it will taste like poison when I drink it. I want to walk up a flight of steps without gasping for air like a fucking trout out of water. I want eyelashes dammit!
It’s now 2am. We are leaving at 7:30 tomorrow because my doctor’s appointment is an hour earlier. Of course it would be on the day that Andy is going to be my chemo pal. Hopefully the Dr. will be on schedule, and we’ll be in and out of there, and Andy can go sleep for a few hours at Tom’ house while I get my treatment, so he’s not up all day and then has to go to work with no sleep. What does that mean? It means if you feel like visiting me while I am pumped full of poison, I will be in the second floor infusion room, hopefully one with windows, and a decent automated bed (not like the bed that required manual adjustments the last time I was there) after 11 am, because before that, we will be getting Asian rice crackers, Starbucks and some more oxycodone, to make chemo more fun. It’s only 3 more hours until decadron dose number 2. Good times.
I was going to try to end this with something positive, but I feel that would be fake, so I am just going to start packing my backpack for tomorrow. I’ve found that since I don’t need to bring a blanket to the infusion center, I can actually get the laptop, my stuffed friends, and snack all in one backpack so I don’t look like a dying homeless person when I go to the hospital. I suppose that’s positive. And I can throw my sheets and blankets into the washer and actually dry them before I go so I can have a clean fresh bed when I get home, so that’s positive. And I already have ginger beer, honey and pineapple juice to get through the next few days. That’s plenty positive.
I think I might actually blog from the hospital tomorrow to document the day’s events. That could be fun. Now I am off to fold another load of laundry and eat a yogurt. Then try again for sleep. So curl up with your favorite toy, my puppies, and sleep tight. And think about all the people who have bed bugs, and be eternally grateful you don’t. Bon soir.
Addendum: There should be an assessment period before people are allowed to be on Facebook. Like they should have to have a myspace and it should be monitored for stupid and annoying things that are misspelled, bigoted, or obviously scams or urban myths. If a person posts that shit, they should never be allowed to move up to facebook. I am tired of being the internet police, sheesh.
Also, why when you google anything about cancer, everything is pink and has to do with titties? I mean I get that breast cancer is a huge issue for women, being that I am one of them, but what about all the other killer cancers out there, why does it seem we only care about cancer that affects the one part of women that, aside from the vagina, are something of interest to men? That pisses me off.
22 April 15 | Categories: c-monster, Philosophizings, Picture Perfect, Profound Insights, Random Rambling | Tags: annoyances, anxiety, bald, blackness, c-monster, cancer, chemo, cyst, death, depression, doctors, dying, endometrial cancer, facebook, flying monkeys, friends, laugh, sleep, uterine cancer | Leave a comment
I made myself get out of bed and shower this morning. Blame the sun, all warm and golden, blasting through the multiple blankets that I use as curtains during the winter (over the real curtains) to block out the delightful breeze that cools my head which comes through these old windows in my bedroom. (also the reason I can hear every dog-damned word that is spoken/yelled/chattered in the street outside which is why I am sitting here typing instead of sleeping because I took two pills to try and sleep and no sooner than I was sliding into blissful opiate dreamland, inconsiderate people arrived home at 11:30 and had to make sure they slammed ever fucking car and house door they could find while merrily chattering all the way, and ruined that attempt.) So here we are.
In truth, I was going to write this entry early. Then I didn’t because I was consumed by a wave of darkness and to avoid contemplating the sucking blackness, I took a nap. However, after showering, I decided I needed to waste half of a tank of gas and get out in that sunshine and try and dispel the gloom that is wrapping itself around me like a blanket with static cling. I tossed on some sweats, a hoodie, and flipflops, because it is spring you know, and was at least 35 degrees, and out I went. I plugged the phone in for music, and then headed out to the valley. Driving around mindlessly while singing loudly always seems to sort things out, one way or another, so drive it was. I decided I wanted a peanut butter milkshake and a hot dog from Sonic, so I headed in that direction. Of course, my music of choice was loud and fast, as it usually is, unless I am trying to enhance a black mood, when we turn to something in the way of Elliott Smith. But today I needed to sing loudly about pain and depression and sorrow, past regrets and hopelessness, which would also be Elliott Smith, but without the painful plaintiff beauty of his chords. When I hit the quarter mile on the Brandonville Road, I laid my foot down on the gas as took it as it was meant to be driven, easing up as I hit the decline. It felt so good to be out, with the sunroof open, and have that minute or so with nothing more on my mind but that feeling of speed and screaming the lyrics to “Keep Falling Down” loudly, frightening the birds and friendly woodland creatures in earshot.
One good thing about winter is that it covers a lot of sins. Like garbage. Now that the snow is melting and everything is still dead dead dead, all the trash so carelessly tossed out the windows of cars is heaped along the roadside in the little streams of melting snow that run along the road, and around dead deer carcasses. Carcasses, carcassi? Whatever. The Ringtown/Brandonville valley roads are beautiful in spring, summer and fall. In winter, they leave something to be desired. Driving them brings up a lot of memories – from trips to the dairy to get milk with my dad and siblings, driving past the first home I ever knew but can’t remember at the #5 damn, picnics at Stauffer’s park when my parents would spend the day arguing and the kids getting splinters from the rickety old wooden merry-go-round, summer vacations “back home” when I was living in California when we would drive all day, cooler in the back, listening to a mix of Springsteen and Led Zeppelin, and top 40 and that new “punk” music I brought with me from California, and late night drives with quarts of beer between our thighs, laughing and carefree. And hours of driving and thinking. It’s my go to to try and sort shit out, just like driving the coast in California was – well not exactly, because well, oceans make everything better, right, whole. But drive I did. To Sonic. Got my milkshake and some popcorn chicken with barbecue sauce because I hadn’t eaten yet to day. And which I later regretted, because it wasn’t really chicken per se, just some chicken like substance with coating. Should have just stuck with the milkshake.
Anyway, as I drove I noticed that many more homes in the area are littered with shit. No other way to describe it, because it’s just like extra stuff that people own that they won’t throw away but have nowhere to store it so it’s just outside their houses in different states of decay. And I started thinking about whether the outside reflects the inside, or if these people don’t care how their house looks, and when did we start being so concerned with collecting so much stuff that we don’t even have enough places to store it. I always used to envy the houses in the valley because they were so neat and tidy, so pretty, and always wished I could live there, to be away from our too small, too old, too mismatched house. To play in a yard with grass. To not be surrounded with ugly black coal banks everywhere (for you young ‘uns, there was a time when our little town was in the midst of gaping scar of strip mining, surrounded by slate banks – much of that is covered with trees and shrubs now). The valley was where all the happy people must live. Now, I’m not so sure.
Anyway, in my critical analysis of what these signs of decay and garbage mean to society as a whole, I realized it was spring. And spring means robins. I must now find a robin. (Fact: Robins, while not seen much in the winter, do not migrate, they just stay huddled together for warmth. When spring comes, they emerge to seek food – robins are individualistic birds. They only get together to mate and survive winters).
This is now a quest. There are crows. Hawks. Geese. Red-winged blackbirds. Sparrows. Chickadees. No robins. (or bluebirds, for that matter) Where are the robins? I am not going home until I find one. As I continue to meander, I drive past places with memories, still trying to deal with all that is going on in my head. I figure that cemeteries, with their vast open spaces, will be a prime source of robin findage. I head in that direction. Then out of the corner of my eye, I spot a red breast, but I am driving way too fast to clearly confirm robin sightage. I am fairly certain that it was one, but until I can definitively confirm that it was robin, we shall continue to drive.
People who know me, know that cemeteries are like one of my favorite places in the world. I love the peace and sanctuary of cemeteries. Unfortunately, and in my opinion, oddly, the cemeteries are still mostly snow covered despite the last two days of sun, and their clear open spaces with direct sunlight. Much of the snow elsewhere is melted, but not really in the cemeteries. And no robins. I do notice a tombstone of a friend’s husband – her name is on it too, waiting for her. I think how odd, that your space is already reserved. Not that I don’t have plans for my own death rituals (which some of you will now be please to know, no longer include Andy having to chop up my body for the vultures to eat for a traditional sky burial, but do now include my ashes being made into bottle rockets and other firecrackers that can be launched into the sky). I am also looking for a trash can now as well as robins, to get rid of the evidence that I have been to Sonic. I check three different cemeteries, and nope, no robins. Just crows.
I’ve been driving for a little more than two hours now. I have managed to negotiate the roads well, missing all of the deepest and widest potholes. I feel bad for feeling sorry for myself just because I have cancer, since my drive has reminded me that many of my friends have recently suffered tragic losses in their lives and illnesses in their own families, and that there are people who live in countries that have no electricity or water. Some watch their families slaughter or live in countries at war where their homes could be torn apart by missiles or a tank at any moment. And here I am whining about having cancer. I need to be slapped. Don’t get me wrong, I am still depressed. I still feel hopeless, and scared and angry. But I am starting to see that it’s not as bad as it is for some people in this world. I decided I am going to take one more road to see if I can find robins, and then head home. My world is dark right now, but I’ll get through it. I’ve been through darker and more painful times, I’ve faced fear before. I just wallow a few days and get over it. But first, I need that robin.
I drive past the spring where we’d get water in the summer and wash cars and drink beer alongside the road outside of Brandonville. I remember being very stoned and listening to the Cars debut album over and over. And being very wet. We washed a lot of cars there when we were teenagers. And drank a lot of beer. I cruise through Mahanoy City, remembering a time when it was a pretty town, much like Shenandoah used to be, but now is just old and tired, full of rotting/abandoned/decrepit/burned out buildings, and covered in the grime of the coal region. I drive out towards Frackville, past the prison, and co-gen plants, sad that this is what’s left for this area. And then I see it. A fucking robin. No mistaking it this time. A fucking robin. Mission Accomplished. It’s all hopping around, looking for food on a partially snow covered lawn. Boom.
And I headed home.
Now I’m here. I am not sure how I feel, but I know I’m going to work tomorrow because I already promised to cover intake for someone since it’s Monday and they need to be in court. And I’ll be there Wednesday, because it’s a morale event, and I said I would bring cream cheese. Thursday we are headed to Pittsburgh to see Off With Their Heads play and stay at my brother’s condo. Friday, we are going to the Warhol Museum, and I don’t know what else. Saturday, we are going to see Pennywise in Philadelphia. Now this may seem like an expensive week, but the tickets for OWTH were only $12, and the condo is free. Pennywise tickets were only $25, and Andy is paying for those as well as for the Warhol Museum. We need to do something fun, to get us out of this rut we are both in. Fortunately, we like many of the same bands, so it’s something we can do together. So at least I have something to look forward to this week – and next week is…drum roll….CHEMO and another stretch of being confined to my bed for a week while I try to like the way water tastes. Life could be worse, and that is what I am hanging on to. Because when I lie in bed, tossing, it seems like there’s not but a black hole that’s sucking me in.
My friends, it appears that most of the neighbors have finally gone to bed, and the next sound to wake me up with be newspaper delivery in about 4 hours. Fortunately I had a nap this afternoon. Tomorrow is work, and more blood tests (it’s CA125 test day) and I get two stickers this time, because last time someone was in the sticker room when I was done my blood draw, and I couldn’t get one. I will have to share a pic of my prizes in the “no sticker, no blood” collection. I’ve got all kinds now, and will have to start another sheet soon. Hopefully, blood sucking will be followed by dinner with my shark sister Ashley at this Himalayan restaurant we both want to try. So there are things to look forward too. Life doesn’t suck that hard, I guess.
The itching of my eyes indicates I should rest, particularly since I still don’t know where my glasses are. Hopefully, writing tonight will keep me from too much tossing and turning. Sleep well my loves, and pleasant dreams to you all, and happy Monday. Be a busy worker bee.
23 March 15 | Categories: c-monster, Philosophizings, Profound Insights, Random Rambling | Tags: amusement, annoyances, anxiety, bald, blackness, cancer, carnivorous kangaroo, chemo, chemotherapy, death, doctors, dreams, driving, fear, flying monkeys, hope, life, road trip, robin, sadness, sick, sleep, snow., sorrow, spring, sun | Leave a comment
It’s never a good sign when I go to start writing and can’t find my glasses. I mean, I can do this without them, that’s what the little magnifying glass is for, to make this shit bigger so I can see it. But I’ve been having a lot of anxiety lately and now, being unable to remember where I put my glasses is going to be added to that mess of thoughts that are rattling around in my skull.
Anyway, I’ve not been writing – not because I haven’t wanted to, because I have, but there was a 10 day stretch where I couldn’t sit up for extended periods which makes the whole typing thing a bit difficult. Like I said, I have had some serious anxiety, something I have never really had before in my life, not at this level. I know it’s related to the c-monster and the uncertainty that is part of this go round with this nonsense. I also know that writing would also help to purge some of it, and I haven’t been able to. I also realized today that I am also really angry this time, angry that I have to deal with this again, angry that I have to put my life on fucking hold because I live in a country that doesn’t believe in national health care. You see, when you have cancer, it’s not like having diabetes or high blood pressure, stuff that is serious, but manageable and affordable for the most part. If I lose my health insurance, I am fucked. I mean, I know that I can still get treatment, but not the best, and certainly not without the added stress of worrying about how to pay for it. So, even though I have FMLA, because there is no finite end of this in sight, I am constantly in fear that I will lose my job, and with it my health insurance which has thus far assured me that I will have quality care. And in my reading over the last few weeks, I’ve learned that while I cannot be denied insurance for a pre-existing medical condition, I can be denied coverage for treatment related to that condition. For example, I can still get health insurance, but they don’t have to pay for ongoing cancer treatments, as long as they cover everything else. This information adds to the anxiety. I am not going to belabor this, I just need to say that it makes me angry that human life is only valuable when it furthers a fucking political agenda. Adequate health and quality health care shouldn’t be something anyone has to worry about. But I live in America, where what you get is what you can afford. I shouldn’t have to worry about things like this, I should be able to focus on getting well but the reality is that I can’t just worry about my health, I have to worry about being able to keep health insurance so I can get treatment I need.
It all comes down to the fact that this time, the c-beast is still inside me. They can’t just cut it out and give me chemo to track down and kill any escapees. All the visualization in the world will not erase from my mind the fact that my whole life is on hold while I wait to see if heavy metal poisoning will stop these arrogant killer cells from multiplying, and hopefully they die off and leave me alone. And unless it vanishes, that shit will remain inside me, waiting, taunting me. I don’t believe I will live in fear, but it’s always going to be there, in the back of my mind. Every pain, every discharge, every weird wiggle or twitch in my body will have me wondering what is going on inside. I am angry about that. I am angry that I have to endure this again, that I have to spend 10 days in bed because I can’t sit up without wanting to hurl, and there’s nothing to hurl, because I’ve eaten so little that it’s all bile. And all of this leaves me scared; I can put on the happy face, I can make jokes, I can smile and laugh and pretend it’s all ok, but I am fucking scared to death that it won’t be, and then I feel guilty because I then thing my thoughts will create my reality and …WHAT THE FUCK IS WRONG WITH ME??? Maybe I remember that the last time I went through this I was much stronger and positive, but then maybe that was just the way memory works, maybe I felt the very same way.
So yeah, I don’t know if it’s the same for everyone who has cancer, but I lie in bed at night and wonder what I did to deserve this. Was it something I ate? Having the laptop on my lap? Being a fat cow? Negative thoughts? Thinking badly about others? Revenge? Consequences of bad decision making? Drug use? It’s just not fair. I want my life back, I want to just be the happy and carefree grasshopper that I used to be. And then I go downstairs and I see Andy lying on the couch asleep on a Saturday night and I feel like it’s all my fault he’s there because his paycheck goes to making sure we have food and electricity instead of alcohol and clubs like it should be for a 23 year old. The last place I was on a Saturday night when I was 23 was asleep on the couch, unless it was because I didn’t get home until early afternoon. And even then I was probably going to spend some money on some substance that would keep me up for another 24 hours. I accept that my teeth are shit for those poor choices, but that should be enough punishment. The poor kid works overtime almost every day. He shouldn’t be here taking care of his mother, it is my job to take care of him. It’s wrong.
I swore I wasn’t going to whine about cancer incessantly when I started writing this but it’s hard not to when your whole day revolves around whether or not you are sick or going to blood tests or appointments or wondering how bills get paid and how to keep your health insurance. I sometimes wonder if I sleep so much because I am sick, or because I don’t want to have to think. (I know it’s because I am sick, but I can’t help wondering). I’m scared and I’m angry and I am worried. I wish I could break down and cry but my stomach ties up in knots and my chest gets tight and I toss and turn and wish I could just forget for a while what day it is in my treatment cycle and forget when I have to go back. I’m 2/3 done with this series of treatments, and my numbers look good, but at my last doctor’s appointment, Dr. K pointed out that while my numbers look good, they aren’t where he wants them to be at this point, so he subtly hinted that six cycles may not be the end of my treatment. And so, the end I was keeping in sight, is no longer so clearly defined. And sure, I know many of you are thinking but he didn’t say you have to have more treatment, and be positive, and stay focused and blah blah blah. Easy to say when the tumor is not inside of you, and trust me, I remind myself of all of those things a million times a day, while I count the hours until the next CA125 test to see where that fucking number is, knowing that even if it’s improved, it’s not a guarantee. Everything is so much more complicated this time, and as a result, my mind is constantly picking apart every twinge and tickle.
And since I can’t literally kick the shit out of the monster inside me, I let other things frustrate me, and then I hate myself for that, because I am not that person. I want to be Polly-fucking-sunshine and I can’t be, even though I constantly try. And lets not even talk about disaster house, my prison during my sick days. I spent two hours today trying to do some organizing and hardly made a dent. I ask Andy to do stuff, but let’s be realistic, the kid works 12 hr days for 5 days a week, and I am not gonna wake him up to ask him to clean the bathroom or do dishes. My friends offer to come help, but I am too ashamed to let anyone in to see the disaster this house has become, and I can’t do anything myself. I feel pleased making my bed and hanging my clothes on hangers. I vacuumed 9 steps the other day, and was too tired to finish, which then made me angry that I can’t fucking do anything. I would wish the house would burn down, and let me start fresh, but that would affect my neighbors and that just wouldn’t be fair.
So yeah, I’m pretty frustrated. It will pass eventually, I’ll get to a better place but in the meantime, I’m in this dark place trying to stay all sunny and hopeful. What I really planned to do when I started to write was to write about the amazing kids my son went to school with at Milton Hershey School (go ahead, click and visit them, this will be here when you get back) and how they started to raise money for me to get my own car so I don’t have to rely on Andy all the time because right now we have one car, and Andy has to drive me places and pick me up, after he works all night. I can drive myself, but when he’s not here and has the car, I’m stuck because I can’t really walk anywhere for anything. It’s on gofundme – it’s amazing to see what some of these young adults donated – crazy – for me, and their messages – it touched me beyond belief. I only found out by accident, and Andy had no idea either. More than the money is that these amazing kids wanted to do this for me, and help Andy and I. But maybe even more touching was the lady at the pharmacy the other day when we were coming back from Hershey. I went in to pick up my “auto refill” pills, which were only partially refilled, so I had to wait. This older woman came in, she was 75, and her refill was also “auto refilled” which meant she had to wait too. We started talking, as my bald head kinda clued her in to my cancer, and she told me how she had a quadruple bypass and then had clots in her lungs and died three times on the operating table. (For the record, she also told me there was no light, and none of that nonsense all those people who died claimed to see) She was a very religious lady, and kept telling me she was testifying. When they called her for her prescription, we ended up hugging each other. As she was leaving, she shoved five dollars into my hand and insisted I take it, and we wished each other well. I was moved by how much a stranger cared about me, and how you can make a connection in the most unlikely of places, on a day when I felt like walking death, and all I wanted was to get home and get back into bed. Of course, I realized that had they not screwed up both of our prescriptions, our paths would never have crossed. Still, it doesn’t mean I am not changing pharmacies, because I am tired of their mess ups. Anyway, it was serendipitous moment that made my day.
Well I think I pretty much got a lot of my ire out in this post. Wasn’t the funniest or most reflective one I ever wrote, and totally not what I was planning in my head, but it’s good enough for me. I’m gonna try and get some sleep, since I want to try to get a few things done tomorrow. At least get a load of laundry or two washed, so that’s it for now lovelies. Be well and enjoy the start of spring. I’m gonna go spend a few hours chanting and hope it lulls me to sleep. Sleep tight.
22 March 15 | Categories: c-monster, Philosophizings, Profound Insights, Random Rambling | Tags: amusement, anxiety, bald, bears, blackness, cancer, carnivorous kangaroo, chemo, death, depression, diagnosis, disease, doctors, endometrial cancer, flying monkeys, narcotics, pain, peace, radiation, rambling, restless, sadness, sick, sleep, spring | Leave a comment
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.
There’ something dead in my throat. I am guessing it probably crawled in while I was snoring and became trapped and slowly met its demise. Whatever it is, it’s really nasty and it adds to the nasty metal taste in my mouth that I cannot get rid of. Apparently, I forgot that you don’t get used to chemo as you move further into treatment, you just get sicker. And I am – I am still not up to getting out of bed and driving to Hershey to do my blood work, but that will change tomorrow, because I can’t put it off anymore.
This whole chemo thing is getting boring. TV is boring, being sick is boring, drinking tea is boring and this weather? It sucks. If I ever get cancer again, it better be in the fucking spring, because somehow I think if I could go sit in the sun for a few minutes a day, I’d feel better but alas, I am trapped here in the tower of gloom and clutter with nothing to do but toss side to side and hope to slip into drug enhanced sleep.
The chemo is killing my sense of humor too. I suppose part of that is because I am trapped here in solitary. Of course, I crack myself up, but I am a captive audience. A captive audience with no energy to escape. I did manage a shower today – and I made some toast, so I guess that’s progress. I just feel like my brain is turning into jello – I haven’t had any serious academic conversations in days, nay, months. I feel like a jumbo hamster on a squeaky wheel, just going around and around, with occasional escapes into the real world, until I am captured by the chemo beast and shoved back in the cage. Even pinterest doesn’t hold my attention for things I will never make or buy the way it used to. Red pandas only amuse me for a short while, and alpacas, well they just make me long for a house on the beach. I have this list of things I could probably make while sitting here if only my eyes would agree to stay open for extended periods of time. I mean things have gotten so bad, that I don’t even turn off Hoda and Kathie Lee at 10 am anymore, I just suffer their stupidity. I even find myself watching the 700 Club more than once a week and that doesn’t bring any laughs either. Okay, well it did today, when the only man who I believe is Pat Robertson told some viewer that it was okay that their daughter did yoga, but only if she didn’t chant afterward, because that’s the worship of Hindu gods. The funniest part was the seriousness in which Pat Robertson tried to mimic the chant. I guess you had to be there.
Anyway, I am gonna keep this short, because being in the tower and watching reruns of Kitchen Nightmares and the Middle don’t really make me the wicked conversationalist. I did however watch some show on the History channel last night that has had me thinking all day. Apparently, mummies have enough DNA in the remains that once the technology is available, we can clone, or reanimate them. Now – stay with me on this – the scientists state we aren’t that far off from being able to do this. I mean we have already injected human brain matter into the brains of mice successfully. Reanimation could quite possibly involve retaining all your memories and experiences of your previous life, and then you would start adding new ones. Would that be a good thing? I wonder. I mean some things you want to forget. And if you remember the past, does it also mean that all your ailments and illnesses are also with you? What if you died a particularly painful death? Would you remember that? And would you be reconstituted in the same state you were when you mummified? Would you want that? Would you want to relive all the experiences you had all over again or would you want a fresh start? I tend to believe we are energy just moving from one form to another, so I don’t know that I would like a restart for this life, if I was already dead. Wouldn’t you always wonder if you were still the same as you were, or if something was missing, or damaged? No one who knew you would still be around, so how would you know? And isn’t the choice of whether you come back or not, taken from your hands by whoever manages to bring you back to life? It seems like an easy question at first, but it’s incredibly complicated when you really think about it. I know there are people who have passed in my life that I would never want to have back in my life again, and then there are people I would love to have back, but I’ve moved on, and would they fit into the life I have now? And what about these mice with human brain bits? What do they do with them and whose brain bits are they inserting in there? And what if they escape and start reproducing? Are these random combinations ever a good thing? Maybe we should worry less about GMO corn and more about these human-mouse hybrids. Think about that.
Well that’s all for now my friends. I’ve exercised my brain more than expected today, and I have some ice cold killers in Alaska to watch now. Have a wonderful afternoon, and wish me luck on getting to Hershey for blood work tomorrow, because I need another sticker for my collection. Plus I am sure the vampires miss me. Until next we meet.
24 February 15 | Categories: c-monster, Philosophizings, Profound Insights, Soapbox | Tags: afterlife, amusement, anxiety, bald, bear, blackness, brains, cancer, carnivorous kangaroo, chemo, chemotherapy, death, doctors, flying monkeys, hospital, rambling, random, science, sick, side effects, sleep, tea, treatment | Leave a comment
So here we are – 2:20AM, on the day I am supposed to do cycle three of chemo. I should be sleeping, and indeed I was, once again with the lappie in my lap. It was long day today – there was a weather delay and I did not want to go to work at all, but I went in, and got through the day. Yay me! I took my first 5 of my pre-chemo decadron, after some initial panic that I was all out. As I pulled out my plethora of pill bottles, and tried to read the labels without putting glasses on, I was once again pondering the fact that no two pills that I take are the same color. Decadron is green, morphine is robin’s egg blue, synthroid are purple and pink, and effexor is yellow. I have more, but I imagine you get the idea that I have like the skittles collection of medications. I don’t even think my dad takes as many pills as I do.
The rainbow of flavors, or rather colors, of my meds is not what brought me here tonight – no, my friend, it’s something much more serious. I can’t find my backpack. Or my iPod (yes, again). I believe both are in the house, I just can’t remember where. This is another of the great gifts bestowed upon my by chemo. Fluffy chemo brain. Sometimes I think my brains fell out with my hair. And as you know, the only thing of value that I own, or at least am still paying for, is my brain. I’m not real pleased when it won’t function like it should. I was hoping to use my backpack tomorrow when I pack for chemo. Yes, I said pack. I need to take my blankie, and monka monkey, and zombie sock monkey and snacks and my purse and my oxycodones (they do not give me pain meds during chemo, but I am free to medicate myself) and my sandals because stupid ass snow is preventing me from getting through this winter without having to put shoes one. Next time my body decides to betray me, I hope it chooses early spring, because having to do all of this during winter really sucks. But back to my issue – if anyone can help me find my missing stuff, let me know. I swear they are right here in the bedroom, but I can’t even keep an eye on the remote control or my phone for more than an hour, so like remembering where I put the backpack two or three months ago isn’t likely to happen.
Anyway, I realize some of you who read this are not on facebook or perhaps done check it daily, or hourly, or every five minutes, like some of us. I had a Dr. visit yesterday, to which I wore the beautiful fox hat (yes, I made it) pictured below:
I thought we were just gonna talk about my blood work, which I would like to announce, looks great. The tumor markers that show in my blood, known as CA125 are back in the normal range with means it appears the chemo is working. I am counting on this round of chemo being the last before remission. So after meeting with Anne and telling her all the things I am doing different this time and how it’s making the sickness easier to bear, she goes to get Dr. K – but she comes back and tells me he wants to do an exam, thus ruining my whole day, because a girl has to prepare for internal exams. I had no time to build the dread that is normally part of being probed. And as if lying on the table, while wearing my fox hat, wasn’t torture in itself, while the jabbing is going on, Dr. K’s pager goes off. Now his pager sounds exactly like the on-call pager at work. The screeching of the angry beast throws me right into a flashback, and I am fearful that they will have to treat me for PTSD. Dr. K tells me he can still feel the damn pufferfish, because it’s still a pufferfish, but is pleased that I am not shrieking in pain while he is doing the exam, which I interpret as meaning this is a good sign. I get another prescription for my pain meds, and more blood work papers and head on down to the vampires in the lab so they can drain more blood (and get my sticker) and then I am set free to roam around for the rest of the day. As per usual I decide what I am hungry for (Five Guys) and drive to go fetch it. I purchase my yummy burger and start driving home, looking forward to shoving it in my hungry belly. Until I don’t want a burger anymore. Now I want a blizzard from DQ. Except they’re close. At 6 pm. What kind of place does this…so now I need to get back on the interstate and drive ten more miles to McDonald’s for a McFlurry. Dinner was served, with a side of french fries, and the burger went in the fridge as the mad craving for red meat had waned.
And now here I sit. I want to sleep, and indeed, I do nod off from time to time, but the decadron makes me hot, and restless. And if I wasn’t having difficulty sleeping already, there are showing a Vikings marathon on the History Channel, in preparation for the new season which premieres on Thursday. I find myself obsessed with it, particularly the soundtrack. It’s like SOA but with horses and battle axes instead of bikes and guns. It even has a Jax Teller look-a-like in Earl Ragnar. I suppose I am also anxious about chemo, and being sick again, but not as much as usual. In less that 24 hours, I will be halfway through this round of chemo. Time to celebrate.
That’s all I’ve got for today. I don’t know when I’ll feel like sitting up again before next week, so if I don’t write tomorrow night, I’ll be back in a week or so. Thanks for sticking around my friends. I swear I’ll try to have my full sarcastic temperament back soon. You have no idea how much energy you exert trying to be funny. I might even try live blogging tomorrow. Maybe even video. But for now, I must rest. As should you. Good night, my friends. Be well.
UPDATE: At 4 am, after a second load of laundry because I can’t sleep, the back pack was located, in only a most obvious place. Next challenge – finding the ipod. Which is probably in a very obvious place as well.
18 February 15 | Categories: c-monster, Craftasms, Feminista, Philosophizings, Picture Perfect, Profound Insights, Random Rambling | Tags: anxiety, cancer, chemo, chemotherapy, cyst, endometrial cancer, exam, flying monkeys, hats, medication, pain, side effects, sleep | 1 Comment
For the first time ever, I completely scrapped the post I was writing and decided to start over.
I’ve started and stopped writing entries several times these past two weeks, (there’s extra bonus writing at the end – a longer post I started and didn’t want to keep writing so I’ll just slap it on the end of this one as a bonus). I don’t know what’s keeping me from writing – anxiety, exhaustion, procrastination – I mean I know it’s not because I don’t have anything to write about. Sometimes I think that I avoid it because I don’t want to have to keep whining about this cancer nonsense. I just can’t help that the stupid monster inside of me just kind of pervades my thoughts every day.
I do think of other things – like getting a pet goat, what book I should be reading, how I wish I had a maid, how I am hungry for brownies, that the season premiere of Vikings is next week, how I would rule the world when I am Empress of the Universe, calculations for the diameter of watermelons at the store – you know, important things. It’s not that I don’t want to write – I do – but half of the time, I find myself slipping into medication-assisted sleep, and the other half, I nod off, unmedicated. Some days I am all fired up about some social issue, I get ready to write and then I get distracted and next thing you know, drool is slobbered all over my cheek and my own snoring wakes me up.
Which is exactly what happened after I wrote that last sentence – I fell asleep, laptop in lap, and woke up this morning at 7ish. I had my wonderful morning cancer killing tea, and just finished some yummy oat meal. I realize I have little to complain about this morning – I feel okay, I can make tea in my bedroom with my loverly keurig, and oatmeal too. I am warm, and comfortable, and I can just spend the day doing nothing, which is what Saturday is often about here lately. I’m still undeniably anxious and restless about next week’s events but I’m grateful that I have such amazing health care that I don’t have to worry about the financial side of this. This whole cancer thing does put things in perspective, but I’m still not in that “live every minute as though it was your last” mindset. I am still too scared about what is to come to get there.
But let’s move away from this cancer nonsense and talk about what is going on in the world. I am sure we all know it’s cold. Well those of us in the snowy areas of the northeast do. My county has finally established a foot hold for a shelter for the homeless, but it’s causing quite an uproar because the shelter is part of a store front in the business district of the biggest town in our county, or I guess what has been formerly known as the county seat. The frightened townspeople are afraid that the existence of shelter will lead to more homeless people. Really? Like a funeral home would lead to more dead people? I often wonder when stupidity and hatred became the norm. Why is there so much opposition – I mean there’s already a drug and alcohol rehab on the main thoroughfare, and we still have the same amount of salt heads as ever. The homeless are still gonna be here, people…they will just squat in vacant buildings or spend the day in the library or the night in a laundromat or Wal-Mart , doing what they need to do to keep warm and alive. How stupid people are that thinking helping people who are in danger of hypothermia or frost bite will lead to more people wanting to live on the street. I just have such a hard time reconciling the emphasis in this area on being good Catholic and Christians and then in the next breath not turning your cheek, but rather turning your back on the people who need your christian charity the most. I feel like hell when I am driving my fat ass to work and I see someone walking in this cold, and people here are too worried about their “things” than they are about another person. These are the same people who will wax poetic on the value of a fetus, until that fetus is born and homeless and grows up in poverty. Then they will call my office and ask someone to go out and “take those kids away” forgetting that this was one of those fetuses that they insisted be born into to poverty. End of soapbox tirade. I have others, I’ve just decided if I am going to post anything, it’s gonna have to happen quick.
Round 4 of attempting to finish this – this is just an example of how tired this stupid chemo makes me. This is my fourth attempt to finish this post. I fell asleep three different times. Even after I drank coffee This is why nothing gets done around here. I get all excited with plans, I get all the stuff out for whatever project I have planned, and then before I know it, I’m under a blanket, dreaming about being attacked by a vicious and violent kitten I am supposed to be pet-sitting. Needless to say, that did not improve my opinion of cats. But on a night like tonight, being warm in bed with many blankets is not such a bad thing. Of course, since Andy is out on the road somewhere with friends tonight after a hockey game, I am now awake because I am worried about his safety on this hellishly frigid night. I couldn’t fall asleep easily anyway, with this howling wind. My multiple layers of blankets on the windows isn’t even keeping the icy breeze off my adorable bald head. I don’t want to text him because I don’t want him checking his phone wherever he is driving considering there is little visibility with the blowing snow. I just hope he had the sense to stay put wherever he is. Motherhood. It’s like an itch you can’t get rid of.
Well, since I have failed at humor and don’t have much else to write about until after my Dr. visit on Monday, I’m just gonna put this lame excuse for a blog post out of its misery. But not until after I share this facebook post from a young man who was one of my students when I was teaching at Lebanon Valley College…it’s nice to read these things when I often wonder if I have made a difference in this world…and according to this, I apparently have:
Everyone please keep Diane Pietkiewicz in your thoughts, prayers, etc. I’m not one for religion, but I’m making an exception and praying to the big guy. Diane is the most memorable part of my Academic collegiate experience. Best professor ever. She consistently made me look at the big picture, taught me never to settle, and that the history of our nation is far from that which we’re taught in highschool lol. She is fighting a bullshit disease, and deserves all the support in the world!
And since Joe talks about praying, I just want to say this…all of you lovelies should know by now that I tend to follow Buddhist philosophy, rather than religion. I am not one for praying although I do chant daily but I do appreciate prayers, in whatever faith and form they come in, because I believe in the power of focused attention. For me, putting positive vibes and thoughts out in the world can’t do anything but good, so I am grateful for whatever words or thoughts you put into action. I spend time every day visualizing this damn puffercyst inside me shriveling up and dying. So pray on, or chant, or just think good things. As a matter of fact, I am really grateful for everything people have done/are doing for me while I endure this latest go with chemo – everything from offers to run things up from the netherworld of the office so I don’t have to, to sending me surprise packaged, to simply asking me how I am. And I apologize for not being as shiny and happy everyday as I have been in the past – I try, but as I’ve whined about, I am so tired all the time. In fact, today as I was rolling over in bed, I realized I would have made a damn fine bear. But not a polar bear, because apparently they don’t get to hibernate. But a grizzly. I would be a fine grizzly. I could be a panda too, but they aren’t really bears, and they also don’t hibernate – but they are pretty lazy, which if me right now.
And with that, I shall try get comfortable and warm in bed, while I wait to find out if my kid is safe. I tacked on the post I tried writing the other right at the end of this one – I promise to try and rein in my adult ADHD next time and stay awake from start to finish when next I write. So stay warm and dry my darlings. Bonne nuit.
(I started this on the 29th of January, or so)
On the first day after chemo, chemo gave to me…so far, nothing that I can’t really complain all that much. I ate some chili (not always nausea friendly, but I am not known for always making the wises decisions), had some tea and ginger beer, and some nuts. No fever, took a couple oxycodone and a zofran (super effective anti nausea drug) and I am drinking water like a camel ready to hit the desert. Of course, that means I am spending a lot of time running to the bathroom, but if it means I don’t get sick, I’ll do laps. Andy cut off his dreads today and then I buzzed the rest of his head, because he wanted to show his solidarity in the current situation. He was pissed that I buzzed the last of the zombie grinch or some other weird Dr. Seuss character hair without him, but I explained I couldn’t go out in public to chemo looking like that…I love making and wearing funny hats, but hats get hot pretty quickly inside, and frankly, I love my bald head. It’s a weird time of year to be bald because it’s freezing outside, so when I am in the cold, I need to wear a hat, but at home it comes right off, and now that I don’t look like I wondered out of a nuclear bomb blast, I won’t be wearing hats indoors at all except to make my doctors, nurses and small children laugh.
The day was long yesterday, my doctor was running late and then I found out my co-pay went up, and I got to chemo late. It was quiet on the infusion unit yesterday, but the day was fun since my friend and co-worker Heidi took a vacation day to drive me to chemo and hang out with me. We played the Chupacabra: Survive the Night Game which could be very fun in you add alcohol and make it a drinking game. Otherwise, playing to best three out of five is enough. But between the game, and conversation and people watching, the day went quickly. My nurse had a bit of hard time getting my IV started…she didn’t want to go with the vein I thought would be a good choice at first, so she tried my hand – no go. She then decided to try around where I thought would work, and hit one, but today it has a huge bruise, which doesn’t typically happen for me, so on my point scale of 1-10 where ten is I feel nothing and 1 is “oh my god are you doing this for the first time????”, she only gets a 4.8 downgraded from the 5.2 or 5.3 she got yesterday. I knew I’d have a bruise on my hand, but I didn’t think I would have on my inner arm. (as of February 14th, I still have remnants of this bruise) It doesn’t hurt, it just looks ugly. But the doctor did say that my blood work looked good and I looked good and let’s just see what happens by the 3 cycle to see if this thing shrinks, and that it’s important for me to just stop what I am doing when I get tired, and walk away from it. I know I don’t now, because when I am at work I don’t think like “I’m sick” and just do the work, and exhaust myself so I suppose I am just going to have to remind myself my body is in a fight, and I need to put it first. Alas, I also need to work to have health insurance and to pay the premium. I am very excited about my first paycheck since December tomorrow. I am going to do something crazy with all that cash…like pay rent.
And speaking of crazy, a couple weeks ago, there was a contest on the facebook group, Saving Money, Living Smart, that I belong to…at Christmas, there was wish list to put on the items that you wish you could get for Christmas, and I put down a Keurig. Well a couple weeks ago, the group owner asked a few of us if we got our Keurigs, and then had a second chance contest to nominate someone who we felt deserved it. Well I felt I did…I mean, especially today, the day after chemo, and then next week, when Andy is sleeping after work, and I am too sick to get out of bed myself and I want a cup of hot tea and can’t go get one and have to wake him up. I don’t know if anyone else entered me too, but I told my story about how I found out about the cancer two days before Christmas and blah blah blah, and today, the FedEx guy shows up and what? Whoa. I now have Keurig from Saving Money, Living Smart and the Keurig Company. How awesome is that? As soon as Andy gets up from his nap, I’ll have him take a picture of me and my Keurig…what a great surprise and what perfect timing. (Even though I bitched all the way down the steps about who was knocking on my door because don’t they know I am resting.) This is fabulous…I can’t wait to take it out of the box and check it out once I get a picture. I just need to get one of those reusable cups for my ginger honey tea. I am excited. (and that’s where I fell asleep that time)
15 February 15 | Categories: c-monster, Philosophizings, Profound Insights, Random Rambling, Soapbox | Tags: amusement, chemo, chemotherapy, cold, cyst, endometrial cancer, flying monkeys, gratitude, postivity, sick, side effects, sleep, snow., tea, tumor | Leave a comment
So hey there happy peoples, what are you all doing for fun tonight?
Movies? Bars? Sleeping?
Me? Oh just combing out hair nests, and itching from straggler hairs that end up all over my back and then in weird places – I’m barely going to have enough for the mohawk tomorrow – it’s going to look super weak, but oh well, the hair has to come off. Little known cancer fact – losing your hair doesn’t hurt, but your scalp is super sensitive and hurts for a while until it toughens up. I have to make a few hats to get through the hairless phase intially, because I didn’t lose my hair last time until April I believe, and by then, it was warm enough to go hairless most days. I still have all my hats from last time, both the ones I made and the ones given to me, but an encore of cancer calls for new hats. I’m gearing up for the next few freezing cold days ahead too.
T-4 days until my next 3d live chemo encounter in HD with HY. We are gonna play the chupacabra game! I have to see what other games I have to take too…good times ahead. For the record, chemo day itself isn’t the worst day, because you get pumped so full of fluids, drugs and other goodies, that you actually feel pretty decent that day…and sometimes even the next day, but by the second day after, it’s a nightmare hellscape. Needless to say, the days before are riddled with anxiety. But can I focus on my fears? No, of course not, because in the background the TV is droning so I don’t get lonely, and there’s a commercial for some sort of vagina freshening product that alleges a woman will gain swagger if her vagina is freshened daily with some spray or powder. Swagger? Really? How do I get a marketing job, because seriously, that’s about the most stupid commercial I have ever had to see. And what followed it? A commercial for adult diapers, encouraging me to wear a diaper in solidarity with those who suffer from incontinence. So wait, I am supposed to freshen my vagina to go buy diapers so people with urinary problems know I support them. My life doesn’t need to be this complicated, I have my own struggles!
I don’t really know what the point of my writing this evening is – I’ve been trying to keep myself busy so as not to dwell on the week ahead. I started making a poncho. I pinned stuff I’ll never do to pinterest. I planned to make other shit. I cooked and ate a pork chop. I cooked up some chicken and potatoes to make curry tomorrow and zoned out to Lifetime movies. So clearly, I must be suffering from anxiety. Part of it is the low grade fever I have had for two days – I want it to be gone so I can go to work Monday and Tuesday, and most importantly, not have it delay my treatment on Wednesday. I’ve been slugging back water to make sure my veins are super juicy for visiting the vampires on Monday, and when the nice nurse goes poking for a good vein on Wednesday. Another curious chemo fact – the vein used for the iv for is not the normal wrist or inner arm or back of your hand – it’s usually somewhere on the side of the lower arm, and if you get a really good nurse, she’ll get it the first time, because she (or he) will poke around with their finger until they are sure they have a good one. I have only had one miss in all my treatments so far – and she realized it right away. But according to the nurses, to insure juicy veins, you need to drink drink drink water the DAY before, not just the morning of. So if someone is going to stick a sharp needle of poison in me, I am certainly going to make it as easy as possible for that person to get it right the first time.
I think I am just kind of having the realness of what’s happening to me sink in. Up until now it’s been a bit surreal. But when my hair started coming out after only one treatment, it was like, hey ho, it really is cancer again. I made it through four days of work this week, and the last two were tough because by noon, I was wiped out. I keep thinking my body isn’t busy fighting a battle against cruel invaders, so I am just fine, but I get home and my legs are swollen and achy and all I want is sleep. Ok, eat and sleep. I’ve been stuffing feelings all week. Today, not as bad as the rest of the week, but man, when I found that Irish soda bread, it was game over. I can’t just eat a piece of it – nooooo, I have to keep picking at it until only crumbs remain. And it was delicious. There’s few things as delicious as Irish soda bread. And it’s a fine balm from what ever demon is clutching at your throat.
Tomorrow, Andy has said he will be joining me in the clean head club – I told him he doesn’t have to shave his beloved dreads – he’s worked so hard on them and they are actually starting to look okay. Not that I like them, but I know it’s a big sacrifice for him. Then I will try to vacuum up all the loose strands of hair that are EVERYWHERE. The best thing about losing all my hair is that I won’t have to wake up coughing up a hairball everyday. You think I jest? Not even. Practically everything I have eaten in the last week features at least one hair. Even tea. Tomorrow, I eat hair free, once again.
So that’s it, or all my psyche will allow me to address tonight. Time for me to try and sleep…the wind is howling out there, so it won’t be easy. Please keep sending me good vibes…the support is felt and appreciated. And to all of you who have sent me cards, thank you. I love cards. Even if you make it yourself. Cards are fun. They remind me of my pop-pop…but that’s a story for another day. I keep them all in a box and look at them, and not just cuz I’m a hoarder.
Pleasant slumbers my pals, may your dreams not be filled with hungry flying crocodiles and mirror that duplicate you into an evil clone. Don’t ask. XXOO
PS. I used the lovely sheep picture because there’s a serious lack of cartoons on line that are about chemo and funny.
25 January 15 | Categories: c-monster, Philosophizings, Profound Insights, Random Rambling | Tags: anxiety, cancer, chemo, chemotherapy, endometrial cancer, fear, funny, HAIR, hair loss, hats, hospitals, random, side effects, sleep, treatment | Leave a comment
Hi there kittens!
It’s Tuesday. I’ve made five days of work so far. Woo hoo. I even manage to get through an intake, complete with the funnest amount of paperwork EVER! I can’t wait til next week!
I know, I know, my joy is infectious. Which is surprising because my hair started to fall out yesterday when I was busy showering for work and believed that I had been attached either by leeches or wet black snakes all over my body. Turns out it was just chunks of hair. You really can’t notice yet, and I am hoping it stays that way until at least Friday night, because if it lasts that long, I am having Andy shave the sides and I am gonna rock a mohawk this weekend. There’s definitely not enough left for liberty spikes, but hopefully I can get a really wicked mohawk going this weekend. Maybe I’ll even color it with some kool-aid for old time’s sake. This will probably be the last time I will ever dare a mohawk, so mark your calendars.
Much discussion was had yesterday about the impending loss of eyebrows as well – if you have followed this blog from the beginning, or if you know anything about hair loss from chemo – you will know that you lose ALL your hair. Legs, arms, pubes, eyelashes and eyebrows along with the hair on your head. I don’t mind the legs at all. Having no eyelashes is odd, but no eyebrows weirds me out too. I didn’t do anything last time about them, but I am going to this time. I don’t want to draw them on, because that just doesn’t work for me, but I might glue some on, or maybe crochet some, or use fuzzy fake caterpillars. Think of the fun when I drop one on the floor at work…EEK caterpillar! Nope, just an eyebrow. Think of all the things I can put above my eyes in lieu of eyebrows. Plastic farm animals. Spaghetti, cooked of course. Orange slices. Gummy worms. Duct tape. They can also come is different shapes – like a big V between my eyes to scare people. Or just one raised eyebrow. Or I can attach them to my glasses. For a change of pace, I can attach them to the back of my head, just to keep it interesting. It will be nice not to wake up with a mouth full of hair in the morning, or have to drag the nest of hair out of the drain. It takes at least 5 minutes off the time it takes for me to get ready in the morning.
In less exciting news, I found out that in my quest to make sure I had mid-length disability insurance I elect for the coverage that would last until I was seventy. Unfortunately, that means I need 90 unpaid days before it will kick in, instead of 15. FML. I am less worried about money than I am keeping my health insurance – if I were to lose that, I’d really be fucked. I am blessed with excellent health care coverage. But you know me, ever the pluck entrepreneur, I’ve got some stuff to make and sell if I find myself really desperate for cash. And no, I don’t mean my painkillers. Or Meth. Speaking of making things, last time I lost my hair, I made fancy little hair animal sculptures for those who so desired them – I hate to waste perfectly good hair. So if you would like a rabbit, or a puppy, or perhaps a lemur (they are all gonna look the same, I will just give them exotic animal names for your enjoyment) leave me a comment on this here blog, and one can be yours, gratis. I will even mail these special trinkets for those of you who may live on the favored coast, if you find you can’t live with out one. The one thing I am a touch negative about is, that when my hair comes back, it comes back curly, and I hate looking like one of the hair bear bunch (see below)
I took a brief interlude to do some eyebrow research and as you can see there are a lot of creative options. I did not know, but wasn’t surprised to find out, you can also buy stick on eyebrows made with hair, for that realistic look. I am pretty sure I will find a better alternative. Like fur. But for your viewing pleasure, I provide the following collage. I’m quite fond of the black eyes of death. It will give me that Uncle Fester look I so covet.
Also during my little break, I finally checked my blood tests from yesterday to see what’s what. My CA-125 marker is lower than earlier this month, which is good, but still not in the normal range, but I will take what I can get. Other levels are lower than last time, and lower in a not so good way, which means I will either get a bag full of liquid vitamins and stuff at chemo, or, the dreaded neulasta shot. Let’s just hope I can get them up a little with better food choices by next Monday. It’s amazing what the internet can teach you, and while also filling you with dread. Like when I looked up CA 125. It’s the marker in your blood for ovarian/endometrial cancer. It was only slightly elevated in this test – two weeks ago is was about 10 points higher. Which means the chemo seems to be doing its job. Well, of course it is, my hair is falling out and I am tired as shit. Until this month, I didn’t know what a CA 125 marker was. I didn’t what a lot of things on my blood test meant. Now, I know – and believe me, I could have gotten through life without having to know, ever. But I do, and I imagine, am wiser for it.
I am trying to get back to healthy eating once again – I had made the most beautiful taco salad this morning with the other half of the marvelous avocado I had yesterday. I was swinging my bag on the way in to work and out flew the salad. A sad, sorrowful mass of spring mix, perfect avocado, sweet yellow cherry tomatoes, taco meat and beans all lightly dressed with some sour cream, like a healthy oil slick on the office floor. And since the healthiest of lunches was destroyed, I had to eat cookies for lunch, and a bag of chips for dinner. We’ll try again tomorrow. I’m still a little broken up over it.
Well that’s about it, happy people. Tomorrow is hug it out hump day. I am limiting my hugging lately because, I am not sure if you know this, but people are germy. Like until you have to be careful about being around the infectious, you don’t really think much about germs. Now there are certain people I will conscientiously avoid, because they don’t wash their hands. I constantly use hand sanitizer to the point that I have icky dry patches on my hands. Last thing I need right now is the flu or a cold. I have also manage to get past some of the anxiety issues keeping me up at night. I slept a solid six hours last night. Go me! I’m going for the big six again tonight…so I must bid you all most pleasant dreams and restful slumbers. I’m hoping for a snow delay in the morning – it’s unlikely, but a girl can dream. And let me know about those hair sculptures. Peace, lovelies.
21 January 15 | Categories: c-monster, Philosophizings, Picture Perfect, Profound Insights | Tags: anxiety, bald, cancer, carnivorous kangaroo, chemo, chemotherapy, cyst, flying monkeys, food, funny, happiness, hats, hope, humor, insight, sick, side effects, sleep, squirrels, surgery, tumor | 1 Comment
Update on my new year’s resolution(s): I was unable to refrain from reading comments on articles posted on the interwebs. #resolutionfail. And this entry includes the name of the town in which I live. Let’s hope facebook doesn’t read my blog and find out.
I’m doing better. Not as insane as I was just six days ago, but not nearly normal either. I made it to work this week – three days in a row. I was in the office on Wednesday and had training Thursday and Friday. Next week I am planning to do a full week in the office, then Monday and Tuesday of the following week, and then it’s time to roll up the sleeves, pump up a vein and get down with the mad chemo party. Chemo buddy for the next adventure will be the lovely Heidi Y, and I am way to excited to be able to bring and play the Chupacabra dice game with we are there!!! Yay!!!
I’m struggling a lot with anxiety at night lately – this is new to me – I’ve never had this kind of panic/terror/unsettled feeling before. My legs are mad restless, and then as I close my eyes, all kinds of madness creeps into my mind and BAM, I am wide awake and trying to find a way into sleep. Last night I tried to meditate, listen to some talks about lovingkindness and the only thing that shut my mind down at approximately 3 am was a coconut vodka eggnog and two percocet. Yes, I know it’s not the wisest combination or something I should use on a regular basis, but hey a girl has got to sleep. I try to unwind in a myriad of ways – not a single one worked.
It’s a day later, I’m still writing this entry and it’s again 3:30am. I’m having a lovely hotcocoavodka, listening to some classical music and trying to write myself to sleep. I was going to read myself to sleep, but then I couldn’t find my glasses – until I got out of bed and settled down in the writing chair to write. I’m still having anxiety. I’ve realized that my body is also out of control with hunger lately, that too is partially anxiety. The other part is my body stocking up for the next great famine. As for the anxiety, I can feel it in my shoulders, my stomach and neck. It’s hard to be “ok” when your body is being a rebel.
There really isn’t much more for me to write about tonight – I mean there is, but I’m not feeling it. It’s like it just wants to stay bottled up inside – maybe it’s waiting for me to be funny again? To write better? To not drink vodka? Who knows, but I know that this is the best way out of my head for me. I can’t even describe how different this whole experience is this time – it’s so much harder emotionally and psychologically. I hate being a reader. I hate being curious – it turns up way more information than I am ready to handle. I know that much of what I learn is really not applicable to my situation, but it’s still now in my head. That is why I am trying to turn my intellectual pursuits in a more spiritual direction. No, I’m not begging God to heal me – not that I mind prayers, because they are positive energy that I need right now to help scour my body of this nasty annoying disease – rather I am seeking a way to center all this fear and anxiety. To find my spiritual core again – I shouldn’t freak out in the middle of a lovingkindness meditation because cause I can’t forgive myself and love myself completely while I am still blaming myself for choice I made in my 20’s that may or may not have contributed to cancer in my, well, my later life. And bam, writing that hit the crux of everything. I’m blaming myself – for my cancer coming back – was it negative thinking? Was it poor food choices? Is the laptop on my belly causing radiation to make cells grow? Is it negative thoughts? Too many sexual partners? Poor health care? Eating ice cream? Birth control choices? Hamburgers? I can’t accept that this is random and keep blaming myself, irrational as that is, that my negative thinking and bad decision making caused this and the only way out is to get back to a better spiritual core and man, I suck as a a human being.
And there it is, and now you see visually what writing this blog does for me, other than give me a place to randomly make commentary – it lets me keep picking the scab of what I am trying to bury until I make it bleed. And when it bleeds, as painful as that may be, I get to let go of a layer of self-blame and self-doubt. The other night as I was meditating, I couldn’t get to the place where I loved myself unconditionally – I know that this is an issue for a lot of people, but I couldn’t let go of the big grey concrete block keeping me from forgiving myself and being able to love the wondrous, loving and generous person I am – the creative and funny and intelligent being – the person who has a spirit of adventure and sense of magic – because all I could see was the person who made some less than stellar choices in my 20’s, choices I don’t regret, because they are the reason I am who I am and if I had made other choices, my life path would be completely different, but I still can’t get those monolithic barriers out of the way so I can love who I am completely.
~ Newsbreak ~ 4:11. One of the drunk ass neighbors on Lloyd St is making his relationship issues public in the middle of the street. I am always torn between being a lookie-lou and running to the window to hear more and just hoping the police arrive and make an arrest. I usually go with the latter, and I am tonight. I don’t understand the people of this town, at least once a night, somewhere in the two block radius of my house, someone is always in the street between midnight and five am, having some sort of argument, involving screaming, daily. The only time I don’t hear it is when I have the AC on. And it’s winter, so no luck there. ~End Newsbreak ~
So yeah, back to my inadequate self, and my loathing of it. I believe tomorrow it may be time for a list here of my good qualities. And some clean up in this cave I call a bedroom. Some day, I will have my own studio, with a real desk, and storage for my mountains of craft supplies, and I won’t be all jam-packed in one room with it all like I am now. I wish I could apply some of my incredible life-coaching skills to myself. I am so good at helping others get their lives together, mine, not so much. Then I put off doing things until I shit in order, which I then don’t, and then I have just a mountain of unfinished projects and snakes of yarn everywhere. I just need a giant dumpster that seals itself shut after I toss stuff in it right outside my bedroom window. When did I become a fucking hoarder? When did I get so attached to my material shit?
I think it’s time to go now. Otherwise, I will start to analyze my actions and I want to sleep at some point. Sorry again for boring you with self-psychoanalysis. I’ll get funny again, I promise. But for now, I must finish my cocoa and crawl back into bed. Since I found my glasses, I will be starting to re-read “Awakening the Sacred Within” – I’m going to shoot for a book a week. For now my friends, this is it – and although boring, this entry is at least, somewhat shorter than most. We are almost one month through this winter thing! So, bon nuit mes amis. I was going to say don’t let the bed bugs bite, but for those of you in the child welfare system with me, that will simply evoke itching because we’ve all had to encounter the little critters at least once in our illustrious careers. Sleep well my friends. And remember to send those cancer killing thoughts my way. xo.
18 January 15 | Categories: c-monster, Philosophizings, Profound Insights, Random Rambling | Tags: amusement, annoyances, anxiety, cancer, challenge, chemo, chemotherapy, children and youth, choices, endometrial cancer, fear, flying monkeys, friends, life, lovingkindness, meditation, psychoanalysis, rant, restless, sick, sleep, sleeplessness, tired, uterine cancer, vodka | Leave a comment
Ah my friends, I have returned, later than planned, but back nonetheless. It’s early morn on Christmas eve, and I am still a little amped up from crafting like a loon as if I could ever finish everything I want to before Christmas day. As we know I am a grasshopper in all things. I did however, finish a project for the tree I have moved from project box to project box for two years now, so I’m kinda stoked. Now the tree just has to go up. Again, another attempt to get Christmas right gone awry because of the stupid pufferfish — which leads us to today’s entry where the minion encounters the pufferfish for herself in the operation remove and apparently realizes that I wasn’t kidding about the torture it was inflicting on me.
When last I wrote, I left you with a cliffhanger about how I was going to see Dr. K on Monday to discuss the future of pufferfish residing in its pouch. I hope you googled pouch of Douglas so you can visualize the pain I endured from leaving the ER and enduring the rest of the week lying on my side because it was no longer possible to sit or stand for very long after that no good horrible very bad day. Monday arrives and Andy drives me to my appointment. LONGEST hour of my life. Every bump stung. We could not get there fast enough. I am sure Andy was doing at least 80 but it felt like 40mph, and every stupid person who could possibly be on the road was on in front of us slowing us down. I get to the appointment. Dr. K is running late. I can’t sit. It hurts too much, so I am standing and pacing and squirming and just generally miserable. Did I mention by this time I have also run out of percocet? Yes, well I was out on Saturday. I have seriously pondered removing this thing myself. FINALLY my name is called. I jump on the scale, and guess what? I am down 30lbs. Since October. Being unable to eat has its benefits. Onto the exam room.
Again, no one is taking my pain as seriously as I am, even when I tell the nice nurse I am at an 8, pushing a 9 on the 1-10 pain scale. I am lying down on my side on the exam table, my blood pressure is “going to pop a blood vessel” level. I am rocking and crying and waiting for Dr. K. He will save me. He arrives. I blubber about how this is now unbearable and I cannot go on, this monster has to come out. He nods and says, yes, I agree. Finally!!! Someone is taking me seriously. He’s gong to get me on the surgery schedule for tomorrow. YAY!!! And even though this means I cannot have anything to eat or drink from now until after I am gutted, I am elated. I would not eat for weeks if it meant I was going to have some relief. Whatever it takes, I tell him, just get it out of me. I pause in my blubbering to complain about his new associate and the minions and how they wanted to keep me overnight on psych hold and how his associate should never ever use the words sympathize and/or empathize ever again because she is clueless about what my pain was like and it came off as cold and uncaring, and they sent me home in the exact same pain I arrived in. And also, please let them know I know the difference between “the pufferfish is trying to assassinate me” and “constipation”. So there.
I meet with the necessary folks to get all my surgical ducks in a row and get some sodas and water from the kind nurse Sue. She’s the best. They will call me with a time for the surgery tomorrow. No more eating and no drinking anything after midnight. Fine, what ever, just give me another ‘script for the happy opiates and I’m on my way. Oh wait, you need to go to anesthesia. No, not them, Dr. Doogie will say I have a heart murmur again. Damn. Okay fine. Whatever it takes to be released from my bonds of pain.
I go find Andy in the parking lot and give him the news. Now we have a dilemma. Do I go home, an hour away and usually 20 degrees colder than Hershey with a winter storm pending, and risk having to drive at a super early hour to the hospital in snowstorm, or do I stay in Hershey? It seems logical I stay here. I have clothes in the car since the ER trip. I have friends I could call and stay with, but with a storm swirling off the coast, I don’t want to inconvenience anyone, so I decided to book a room. I get one at the Simmons Motel which I will plug here as a very nice, quaint, clean and comfy room and a 50’s feel and a super soft bed. And quiet except for the damn train. But I am getting derailed. (see what I did there?) In the meantime, Andy makes arrangements for his friend Tom to pick me up and get me to the hospital in the morning so he doesn’t have to come down and just sit around all day. Now some may say it’s odd that I don’t want anyone with me – but frankly, it’s easier to be by yourself, in my opinion, you don’t have to make anyone feel OK, and comfort them. You can just get shit take care of. We go hang out with Tom for a while, I get my pain under control with some medication, and head back to anesthesia. I meet with the goofy anesthesiology associate – I think you have to be a bit odd to work in that department or working in that department makes you a bit odd, because she asks me this litany of questions but doesn’t put down the answers as I tell her as I find out later. She asks me about my “heart murmur” and I ask her to keep reading so she can see that I had an expensive EKG after that diagnosis, and that there was no heart murmur. Her response? Oh, right I see that now. Then she asks me about my anemia following my surgery. I tell her continue reading, so she can see that I lost a ridiculous amount of blood from my tumor and that once I got some blood bags hooked up, anemia gone. Again, Oh right, I can see that. Then she asks me about my thyroid. Again. I tell her to read ahead, and again, she sees the answer I was going to give her. It takes forever. I want out . I just want to go to the hotel and sleep until I get the call. Let me go. Please. Finally, she leaves and the Dr. comes in. She checks to see that I am still breathing and I still have a heart. I sign the papers. I get to leave. I go to the hotel and check in and send Andy on his way. All is going to well, see you in two days. We hug, and give the usually mother/son affection. I tell him, no worries not gonna die.
I find that my surgery is scheduled for noon. Oh good, I could have gone home – but hell, the room was only $50, I don’t have to worry about being tempted by food or drink because I have none, and I can just lie there, in an opiate haze and do my bowel prep. Those of you with previous abdominal area surgeries or in the medical profession will understand that this means a lot of time running back and forth to the bathroom, typically in the middle of the night. I drift in an out of pain riddled sleep, literally counting the hours until I will be rid of this nightmare inside. I finally doze off for a few solid hours until BOOM. The medication for the bowel prep sends me running to the bathroom. Now the fun starts for the next 4 hours. I get through night, and though I’d like to remain in this super soft and comfy bed, I have to go. Tom comes and picks me up and takes me to the hospital around 10, because he is squeezing me in between work, and I wait. Counting. I am all checked in and they tell me a volunteer will come get me when I need to go to the surgical wing. I am stoked because I can then get a wheelchair ride instead of having to make that long walk. I connect to the free wifi, and get down to the business of saving baby pandas from the mean dragon. I will save you baby pandas.
Noon. Gee, all the volunteers have gone home, so here’s a map and off you go to same-day surgery, ma’am. What? I have to take myself? No wheelchair. Walk? Oh fine, and I head off. (please make no mistake, I love Hershey Med Center, they are awesome and I would not go elsewhere for my health care) I get to the elevators when I encounter on of the Sons of Anarchy Pennsylvania motorcycle club members. I can tell this by his hoodie, that reads “Sons Of Anarchy – Pennsylvania.” He has a pager. He must be a MD too. Why else would he have a pager, being in a biker club? He notices my Spamalot t shirt I am wearing from the musical. He shares with me that Spamalot is one of his favorite musicals too. If only I wasn’t about to have surgery, I may have just met my soul mate, a biker who loves musical and is clearly a doctor to boot! But as my luck would have it, after we exit the elevator on the surgical wing, he turns left and I go right, and our potential love affair is over. Sigh.
At the unit, I am escorted to my prep area and given a gown and some special washing clothes to prepare. The nurse shows me the chart and tells me how to wipe down for surgery and says when it comes to doing my back, ring for her and she will do it for me. I do that and a different nurse comes back to help. I tell her what I need, and she says to open the last package, place the pad against the wall and rub up and down against it like a bear scratching its back on a tree. I look at her surprised, about to question her, but still ready to follow her instructions, when she says, “just kidding”. I laugh with her and said that I guess they have to get their fun anyway they can, and she said she was gonna see if I was going to do it, but she decided against it. I told her had she not stopped me I probably would. I hope on the bed and entangle myself in my blankets and listen to an Anxious and Angry episode on my iPod I guess my laughing to myself troubled the nurse and one comes to hang out with me and get all my vitals and shit. She hangs out for a while, and finally I am ready for the big surgery, when they ask where my ride home is. I said I am not going home til tomorrow, and she’s all – well it says here that you are going home after surgery – I look at her and say, uh no. That’s not what the Dr. said. She leaves to go get that worked out. Time check. 2:20PM. Technically I am supposed to be in the ER in ten minutes. She comes back to assure me that I am indeed staying overnight and informs me that surgery is running about 45 minutes late. I tell her it’s cool, I was a last minute add on, and as long as the pufferfish is dealt with, I will wait. I pick a movie to watch on Netflix and wait.
3:45. Still waiting. Me and another woman are the only people left in this holding area. She’s crying and whimpering, and I am am just happy that gutting will occur. 4:30. I’m on my way. Next stop the OR. I tell the operating room nurses that they better keep Dr. K focused and don’t let him mess around, I want be in and out and in recovery before the Season Finale of SOA at 10pm, so no dilly-dallying around in there. They assure me they will keep in him in line and before you know it, I am waking up in the recovery room to another nurse asking me if I want ginger ale. And this Mennonite lady in a rocking chair smiling at me. I wasn’t sure what was going on at first and then I slipped into full awareness once I noticed there was no pain. JELLO!!! I could have JELLO!!! It’s JELLO heaven. I immediately order up a few orange jellos and some water and eat like I haven’t eaten in days. Oh wait I haven’t eaten in days. I inhale the JELLO and begin to keep the nurses and the nice Mennonite lady in stitches with my sense of humor until they determine I can go to secondary recovery down the hall. The doctor will see me then. My “sister” Paige calls me and we chit chat for a bit as the anesthesia wears off. I assure her I am fine, and think about getting more jello. The little boy in bed across from me belongs to the Mennonite woman, and needs to go to the NICU, but there’s a problem getting enough people to help transport him – I tell my nurse she can go help, I have things under control, I’ll be fine. She is about to do when word comes down, I’m off to the next stage of recover and away we go. At this point I realize I still have a catheter. I am not please by this. I ask for its immediate removal. Denied.
I get settled in my room. I have some sort of inflatable bed. It’s very comfy. I have the special massaging boots I love so much on, and my phone. Rudolph the Red-Nosed Reindeer is about to start and I can have all the Jello I want, and when I am ready, even a sandwich. I make sure I am not dead, because it seems like heaven. Especially the no pain part. No pain. Did I mention NO MORE PAIN. I get a new nurse. Like all of the nurses, she is super nice. She tells me I am staying there all night as there’s been some sort of influx of patients on the Women’s Health wing and there’s no room for me there. I see all kinds of people walking the halls – they aren’t stuck with a catheter. I ask again for mine to come out. Wish Granted. I am even allowed out of bed. I get up and head to the bathroom, just for fun. I have no pain. I am so happy I can’t even explain. I jump back in bed, watch the final episode of SOA, call Andy and eventually get my sandwich. I take several trips to the bath room, roam the halls for a while and finally fall asleep around 2 am. I still have no pain. If I didn’t know better, I’d say I’m still not awake and this is all a dream.
I get up around 6 when the female minion arrives. I remind her that in the ER she said she said she would not be gutting me. I ask her what happened in the ER, because none of the nurses knew the exact details. She tells me that they went in, it was hard to get to, they just drained it and did a bunch of biopsies. I ask about the C monster due to the what I read in the CT scan and she tells me that they are pretty positive that things were normal, but they won’t know until the reports come back, because you can’t tell those things with human eyes. I ask where Dr. K is. She tells me they will be back between 8 and 9 to discharge me. At this point I am starting to think he called it in, and let her do the surgery because I didn’t see him before surgery or in recovery and now he’s sent her in here and I am not even sure he didn’t go back to Disneyland. But I’ll wait to see.
I alert Andy to come fetch me. I am starting to have pain from surgery but not pufferfish brutality. I am told to wean of the perocet first and then the morphine. I get up and head to the bathroom to produce enough pee to be allowed to go home. After succeeding in that area, I am provided with a delightful breakfast of eggs with salsa. I can’t really eat, but I try. The nice nurse who was with me through the night tells me that Dr. K and the minion aren’t coming back but I can go home. I find this odd, and now I am sure he is just a figment of my imagination, but I am going home. I get freed from all of the IV tubes and machines and dress to go home. Run to the bathroom again. When I get back Andy has arrived. I am free to go. Still no pain. It’s a early December miracle. The minion comes back with my note for work, and a pretty prescription for percocet and I am turned out into the cold. Andy and I head home, after stopping for chinese and a chocolate croissant. I am cured.
This brings us to today. The pufferfish remains. He is still under the watchful eye of Dr. K and my close monitoring of my body. There are more tests to be run, but I remain pain free. I am weaned off the morphine (yay) – I have no debilitating pain – I had my one week check up – wounds are healing very slowly, and there was a lot of bruising inside and out. My incision did not start spouting fluid like they did during the last surgery. I can eat a little and sleep a lot. I have lost 40lbs now. Things are looking okay, but I cannot go back to work until the 6th after my 4 week check up and I can’t lift things. This means no holiday baking, not decorating, and only doing things that require sitting or lying down. I drove the car to the Dr. yesterday – I am still recovering from that, but the bottom line is I am recovering and will be able to enjoy the holiday with NO PAIN.
And that my friends, it the second part of the story. I will relay the story of my one week check up at a later date, but it involves minion 2 (the male one). It’s time now for me to return to watching White Christmas and sleeping. Have an awesome holiday and be sure to savor every minute you are with those you love. Eat, drink and be merry. I know I will be when I am gnawing on the bone of my rib roast on Thursday. Tomorrow (actually today) is the annual family Christmas eve dinner. Pictures will be forthcoming and I bought a special surprise that will bring joy to the hearts of many and make the family photo spectacular. I will share that debacle with you all later. Merry Christmakwanzakuh. I hope it’s all you wish for an more.
24 December 14 | Categories: c-monster, Philosophizings, Random Rambling | Tags: amusement, cancer, ct scan, cyst, diagnosis, doctors, flying monkeys, funny, gratitude, health, holiday, hospital, humor, minions, pain, peace, pufferfish, random, restless, sleep, surgery | 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
So, I’m trying to wean off of the morphine. I had my appointment with Dr. K. My treatment plan is this: suffer. No, really, it’s manage the pain for now, try to lose 30lbs or the weight of a medium size dog, and then try some laparoscopic surgery in the New Year. Not exactly what I wanted to hear as my doctor was stabbing me in the side saying “yep, your cyst is back and no, I won’t cut you open.” Apparently, the pufferfish is not the toxic life threatening kind of blowfish. It’s just a pest. An inconvenience. A bother. And I’m stuck with it at least a while longer. Because of where it is, and my “fluffiness”, the Dr. would like to see me drop some “fluff” to be in a better place for the procedure. He has said if he goes in and it would be more hazardous to remove it, than it would to leave it be, it’s gonna stay. If he can’t get it with a laser, I’m stuck with it unless something more dangerous grows alongside it or I am impregnated as part of an alien experiment. It’s like a baby I’ll never deliver. Again, another example of me wishing for something and getting it, but only in the universe’s twisted system of fulfilling my dreams.
So my days are now categorized into “manageable” and “unmanageable” – the pain is ever present, but there are days when it is tolerable, and days, like this morning, where it is brutally cruel and tortuous. I waited too long to take a pill, and I was rewarded with two hours of writhing around on the bed bellowing like an elephant seal and looking like a beached beluga whale. And to make is stop, or rather, dull it, I had to double up on the opiates and send myself into a coma for an hour until it was time to go to work. Don’t worry, I am smart enough to not drive on coma mornings. And every time this happens, I make a silent wish that medical marijuana will someday be the law in PA. Because I believe that much of my pain would be squelched by a cannabis brownie.
This will not deter me from the Wine and Whine OTR trip this weekend in which we shall descend on local wineries like thirsty locusts and suck up grape nectar until we tumble back onto the bus. I’ve never done one of these wine tasting trips, but I am looking forward to it. Although I believe there’s some sort of cautionary bit on my prescriptions about alcohol intensifying the effects. Also long as it’s not intensifying the pain, I should be OK.
I apologize for my failure in the witty blogging that you’ve grown accustomed to, but the narcotics dull my shine. I hate not being myself, and I hate being in pain and there’s no happy medium. But I’ve committed to myself to write my way through this, so maybe one other person who is struggling with the magnificent residual gift of the c-monster doesn’t feel insane. They give you all these pamphlets about what treatment is like and what the effects of chemo are, etc, etc. And they show all these smiling “survivors” on TV, all bright and beautiful – but what you don’t hear about is all the goodies that the disease and the treatment leave behind. I’m still having to randomly smell phantom odors (all of which are unpleasant), I’m tired a lot, my hair still tries to be curly, and then there’s this fucking stupid cyst. But there’s no evidence of any cancer, so for that I’m grateful
So since I took my happy little blue pill an hour ago, I’m nodding off as I type, so this signals I should try to get some rest while I’m in the honeymoon stage of numbness. But before I go, I should announce that in my efforts to defluffitize, I’ll be trying to eat in a healthy manner. That means no more “single serving” pints of Ben and Jerry’s and stuffing pizza in my mouth like I am the beaked creature in Beetlejuice whose head practically opened in half. I’ve asked my coworkers to punch me or knock unhealthy food from my hands at the office, so if you see me in a public space dining on sugar bombs, please feel free to do the same. I am somewhat upset that I am trying to do this during the eating season when orange kitkats, turkey cranberry paninis, and warm chocolate cookies are taunting me like tiny demon sprites around my head. And now it’s time to watch American Horror Story, because the morphine and percocet don’t give me enough weird scary dreams on their own.
Peace my pumpkins, be well.
8 October 14 | Categories: c-monster, Philosophizings, Random Rambling | Tags: annoyances, anxiety, cancer, challenge, cyst, diagnosis, doctors, fear, flying monkeys, food, gratitude, healthy, home, life, morphine, narcotics, pain, positive, restless, side effects, sleep, surgery, uterine cancer | Leave a comment
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
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 suppose I could go back and read my own blog to see if I blogged about Mother’s Day. But being that I am sure I am suffering from MERS and insomnia, I prefer to just pretend like I did, and say that the injured knee seems to be healing, without medical intervention. I stayed off it all weekend, and it seems to have made a difference. Remember people, just because other people are having fun on the rocks does not mean it is safe for you. Also, remember the larger you are, the faster you will slide and smash into said rocks.
So here it is Monday night. I rested all weekend only to wake up from a restless sleep filled with nightmares about centipedes, cockroaches, and rabid aardvarks to realize I am infected with MERS. But I had court today, so naturally I had to drag my ailing body to work despite an half hour of retching in the bathroom sink. Now, I know you are saying to yourself, self, how ever did she get MERS? Was she in Saudi Arabia? Of course not, I just asked Web MD, and of course, my symptoms match. They also match food poisoning, and multiple flus and viruses. But I am positive it’s MERS. And I can’t sleep. I have been trying to nap on and off since I came home after court, but it doesn’t last long. I think I am afraid of having more nightmares. I would try meditating but I am also afraid that whatever opened those shoeboxes of fear in my brain will find meditation an opportunity to empty out a few more boxes of terror. My brain has been in overdrive for a few weeks, and we all know what that can lead to.
I’ve been meaning to write all week and up until I started writing I have big plans for some serious commentary, but now all I can think about is why I have to wait so long for more lives on Maleficent Free Fall, and how much I want to sleep and can’t. I believe my intestinal tract and stomach have come to terms about how we’ll get through the next 8 hours, so all I need now if for the sandman to cooperate. I’m off tomorrow to go vote, so I can sleep in, but first I have to sleep. The vampire children have even been unusually quite for this time of night so I can even sleep with the window open. I’d go get a cup of chocovodkacocoa if I didn’t think it would make me sick all over again. Maybe I’ll just watch the season finale of Vikings again for the 37th time.
Be safe my readerlings, I’m gonna go do a jigsaw puzzle and see if I can fall asleep with the computer in my lap.
It’s been a rough day. Week. Hell, decade. I’m tired and I want to crawl in a hole and sleep for days. Alas, that’s not an option. But I was talking to one of my mom’s today, and I was doing that life coaching thing I do so well for everyone but me and I told her the same thing I tell everyone about feeling good about yourself. Make a list. Write down your fabulousity. Read that list, add to it, and remember every day how amazing you are. I don’t do that shit often enough. And I know some of you reading this don’t do it either. At all. So get your paper and pen, or crayon, or use blood, it’s your list. No, seriously. Go get it. I’ll wait. I mean you can use the computer if you want, word, or open office or whatever. Do they still make Microsoft works? Are you ready? All of you? Because I am going to help you make your list. It’s an interactive blog today! We will make a list together. Ready?
#1. You are beautiful. Yes, you. (applicable to all genders) Every day, someone looks at you and loves you more than you can imagine. Yes, you. Okay, it might not be the person of your dreams, or secret crush, but to someone, you are undeniably beautiful. Inside and out. And every day you deny that to yourself, you hurt that person who believes in you. So stop it now, and accept you are beautiful. Let it shine. And here’s a secret: that person, is probably persons. Multiple people see the beautiful you.
#2. You are uniquely talented. It doesn’t matter if you don’t believe it. You give good hugs. Or your sarcastic wit is the highlight of the day for someone who might never speak to you. Or you play an instrument or write poetry or make bracelets out of rubberbands. Or eat crayons. You are unique. Even if you look like everyone else.Even if you don’t believe in yourself. Someone does. I do. I know every person reading this has some talent that I am envious of. Something I can’t do. Like make brownies, or pancakes. Or keep a clean house. You might think it’s the boringest thing in the world, or common, but someone is in awe of what you take for ordinary.
#3. You are a good friend. Maybe not mine, but someone’s. Someone would have a huge hole in their life if you weren’t there anymore. You may not even know it, or know how much you mean to someone, but they do. And it may have been the smallest kindness ever, but in some moment you made a difference, and you changed a life. Feels pretty awesome, doesn’t it?
#4.You’re strong. I know it doesn’t always feel like it. In fact, if you are like the rest of us, some days you feel like the weakest human alive and beat yourself up for not being as strong and resilient as person x. But somewhere, someone has looked at you and saw you as strong as inspiring. It’s true. Just because no one made a movie about you doesn’t mean you aren’t a hero. So keep up the good work!
#5. You are intelligent. Yes, it’s true. You’re reading my blog, so clearly you have exquisite taste, a fine eye for brilliant writing and the good sense to read this. All markers of an extraordinary mind. So congratulations, you are extraordinary.
See how easy that was? I could continue, but just like when you are learning to ride a bike, eventually the training wheels have to come off. So little birds, I’ll get you started on the next one….
#6. I am….
It’s really quite simple. You will struggle getting started (at least I did) but once you get going, you’ll find great things about yourself everywhere.
And now, I find myself reading hit the hay. Like I said, it’s been a rough day. And it’s heading towards tomorrow. Which will be a challenge as well. I know you are anxiously awaiting my challenge posts daily and I am behind, but my lappy is in rehab, getting a new video chip,( if that’s really what’s wrong) and I am lost without her. She is due to return next week. She was almost home yesterday, but then had a relapse, or a misdiagnosis. So for now, you’ll just have to hang in there with me, and hope it’s curable.
Fairest and fortuitous dreams my friends, and keep working on that list.
And here’s your f words to look up:
Fatuous, firkin, forswink, fulgour
15 April 14 | Categories: A to Z challenge, Profound Insights, Random Rambling | Tags: a to z challenge, affirmations, anxiety, atozchallenge, beautiful, flying monkeys, funny, gratitude, happiness, hope, humor, inspiration, list, positive, positive attitude, restless, sleep | 1 Comment
two days, two entries.
I think I’m going to at least make it to p so I can discuss pangolins.
Today’s blog is brought to you by the letter b (and in honor of that, a poem I wrote with b words is here)
and the number nine. But no one cares about numbers. Poor numbers. They should just go off and die.
Today I will discuss baby-snatching and Buffy. What do baby-snatchers like me, and Buffy, slayer of vampires have in common? Well for one, we can both be considered protectors of good, defenders of innocents. Buffy slew the undead, and baby snatchers sometimes slay the people and things that nightmares are made of (of course, the Slayer had stakes and in later episodes, stockpiles of cool medieval looking weapons, and a snatcher’s toolkit is her (or his) intelligence, wisdom, and probably a court order.
Then there’s the whole crisis of conscience thing. Buffy struggled with love and need to protect her loved ones, like her sister, when she discovered Dawn was the Key, and again, during the times of Dark Willow. We snatchers struggle with many ethical dilemmas, like having to sometimes remove a tearful child from their home because it isn’t safe. We sometimes have to make decisions that don’t always make us feel good, but are the right decision, like when Buffy leapt to her death as a blood sacrifice instead of dawn.
You are probably thinking…wow, I never realized these striking similarities between Buffy and the business of being a baby-snatcher. That’s right, because I am making this up as I go along, and indeed, surprising myself with these revelations! But wait, there’s more…
Buffy, as you know, lived over a hell-mouth. Going to the office feels like we are IN a hell-mouth some days. Buffy had to patrol all the time. Unfortunately, once you become a snatcher, you are, either consciously or unconsciously, always on patrol. I offer as proof the fact that for a few months, I could barely leave my house without locating a child in need of my intervention. (and like Buffy, my work is never done, you save one, and five minutes later, there’s another one needing saving).
Still aren’t convinced of the parallels? Okay. Well, I can give you another. Or five.
Buffy had a great, dry, sense of humor. An appreciation of the ironic. A tight group of trusted comrades. Me too. Especially the trusted comrades. For as hard as our job is, I have a mighty fine group of coworkers who have my back, and who can be counted on to bring laughter into the mix to take the edge off the unpleasant task of snatching.
- You have to be strong. Dawn, the hardest thing in this world… is to live in it. Be brave. Live. For me.“
- ―Buffy, Season Finale, Season 5 “The Gift”
Buffy was not always fond of being the Slayer. Some days, I too, am not fond of being a snatcher, but like the Slayer, it is my duty. At least for now. And unlike the Slayer, I’m not required to do it until I die. And Buffy spent a lot of time in cemeteries. As do I ( this is a very personal comparison, it is my belief that many snatchers do not value the beauty of cemeteries as much as I do, although, I highly recommend them for their soothing silence)
I suppose this makes little or no sense to you if you were not an avid fan of Buffy the Vampire Slayer (the series, not the movie – I’m not a fan of the movie, but I do own the boxed collector set of all seven seasons of Slayer) so if you have never enjoyed the Slayer’s antics, I suggest you start now. Watch it once and take it at face value, and then watch it all several more times to catch the commentary on family, relationships, morality, ethics, and social commentary. Many a college paper I have written on themes in Buffy. It’s masterful and fun at the same time.
And here’s some more b words, for your googling pleasure…
brobdingnagian, bantling, bdellism (you will really like the last one)
and with that my buddies, I bid you buenos noches and bye-bye.
2 April 14 | Categories: A to Z challenge, Picture Perfect, Profound Insights, Random Rambling, Soapbox | Tags: a to z challenge, atozchallenge, Buffy, Buffy the Vampire Slayer, death, flying monkeys, funny, gratitude, happiness, inspiration, pain, positive, Slayer, sleep, The Gift | Leave a comment