And Now We Have Deatheaters
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.
Me: Laughter
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.
And On Mondays, We Get Probed.
Hi there happy people. I hope you’re happy people. It is Friday after all. That means it’s the weekend, right? I don’t care so much about the weekend anymore since I hardly work these days, but it does mean that people are available to do things, which they typically are not during the week.
So I could tell by the number of new views on my Peckalicious facebook page that people were wondering where the most recent post is. While they share the same name, that page is for shit I make and want to try and sell. When I actually thought I could make a side income from making shit. What I learned is that people want handmade shit for like pennies, unless you claim to be Amish, or “country”neither of which apply to me. So now I just make shit to give people. And beside, having to make things for money kind of kills the joy for me. I do it because I like to; money is nice, but I like the creative process.
If you are a facebook friend, you got the condensed version of the Dr. visit on Monday. I get tired of typing it out again and again, so I usually send a group message after my visit and post a synopsis on Facebook. Sometimes it just seems like it’s redundant – things don’t change much, or there’s waiting for things to change. But before I continue, I’d like to make a request or perhaps, just an comment, to people who frequent doctor’s offices, and particularly those who are only there for a damn blood test: YOU DON’T NEED AN ENTOURAGE. Really, unless this is your first blood test ever, you don’t need to bring your whole family. Even if it is, you don’t need more than one person to hold your hand. And pay attention to the instructions at check in. Just because you didn’t listen to the helpful staff who told you what to do with your purple or yellow folder because you were talking to YOUR FUCKING ENTOURAGE, doesn’t mean that because you sat there with it for an hour and now you realize you were supposed to put it in the bin so they know you are here, that the world should stop and you should be called next. Also, to all the fucking whiners in the waiting room. You have cancer. You are here to see the Dr. Threatening to leave because your name was not called in the 10 minutes since you sat down, (with YOUR FUCKING ENTOURAGE) is gonna hurt no one but you. You should be grateful you have time to wait. I know I would personally prefer being at home on the couch with my medication, but hey, you drove here, you parked the car, and came inside, commit. I’ve rarely been to a Dr. where I have been seen on time. The nature of medicine itself does not cooperate with linear time. Bring your happy face with you. And if you are in a hurry because you made other plans (with YOUR FUCKING ENTOURAGE), then you can cancel the plans, or the reschedule that visit. You and YOUR FUCKING ENTOURAGE took up seven seats in this waiting room. I have to sit out in the hall on a bench, with a sweet grandma and her grandbaby (this is sort of a blessing because the baby is muffling your bitching and moaning). I’m not complaining. I brought a book, and my phone to listen to podcasts. There’s a damn refrigerator with drinks for those of us with cancer. Get a fucking cranberry juice and shut the fuck up. I’d like to clarify that it is usually one or two people complaining, not a large number, but they always have a FUCKING ENTOURAGE and they are always loud. You know this waiting room is small, and there is limited space, but please, make sure that you and your FUCKING ENTOURAGE spread out as much as possible. AND WHATEVER YOU DO, PLEASE MAKE SURE THAT YOU AND YOUR FUCKING ENTOURAGE STOP DEAD RANDOMLY IN FRONT OF PEOPLE WHO ARE WALKING BEHIND YOU. Here’s a tip – if you are just there for a blood test, try showing up in the morning. Early. BEFORE YOUR FUCKING ENTOURAGE GETS UP.
My appointment was at 2. That’s “the get here on time” time. The appointment is really at 2:15PM. I am feeling week and tired, but am having a lovely conversation with the sweet grandma I met who was also a patient of Dr. K, and was scheduled for 2:30. Her grandbaby kept us all amused. I had enjoyed a brownie on my way to the Dr. so I was rather mellow, which I should bring for the whiners and their FUCKING ENTOURAGES, come to think of it. I was finally called around 3:05, which was pretty good for Dr. K, because unless you are one of the first three appointments for the day, you typically wait. No med students today. Just the nurse, Anne, and the Dr. I have no fever, I am not depressed or suicidal, and my blood pressure after a few moments of meditation, is a sweet 124/83. Dr. K and Anne come in, and I tell him about the continued bleeding and my exhaustion and blood craving. I’m not having any pain. He’s super-stoked when I tell him I’ve been off the opiates since Christmas Eve. My herbal medication does that job, although I’d rather have a brownie or some tincture. Dr. K says he’s pretty sure that the pufferfish exploding and continuing to drain is a good thing at present – at least it’s not crushing anything and forcing the intrusion of tubes into my body. I think Dr. K is trying to impress upon me that my experience with tentacles is not forever over because then he starts talking about the possibility of a fistula pushing into my bladder and then requiring double nephrostomies. I remind him that it’s quality over quantity and I’m on a no-invasive-tubes mission. What’s the point of being housebound and miserable in order to extend your life a couple or three months? Better to burn out like a fucking comet. This should come as no surprise is you know me well, even if it makes you uncomfortable. There’s a huge difference between living life and existing.
Anyway, I tell him I want to go to Ireland in April, and I need to know if that’s a reasonable expectation or should I put things in motion sooner, and Dr. K says he thinks it’s reasonable and he’ll work with my treatment to help it happen. It still doesn’t mean I am getting some delicious rejuvenating blood. He says we’ll wait another month and see how the chemo pills have worked, and then I get to have another thrilling CT scan and then we’ll talk about what’s next. My next appointment is February 1st. It’s almost like the pufferfish will be pelvic groundhog, letting us know if there will be six more weeks of bleeding. It’s not even like a period, it’s so random and weird. There’ll be hours of nothing and then it’s like the tide’s coming in. He asks how many pads a day…I guess at 4, but then when I get home, I realize it’s more like 6. Oh wait, I forgot to do my “THIS IS GROSS” warning. Oh well, suck it up ponies. Anyway, we chat and he says we should probably do an exam, considering there’s a hole in my vagina that spewing internal muck and we should make sure it’s not become a disaster area. I agree as much as I hate the probing. I really do. If you ever get cancer, which I sincerely hope you don’t, wish that it’s in your toes or left pinkie, or ear. This internal examination nonsense never becomes an enjoyable part of the visit. I know that some guys think that we ladies enjoy having things in our vaginas, no matter what that might be, but no. We don’t. Especially not while at the gyno. After we have agreed, he and Anne leave so I can get undressed.
I do what I need to, and notice there has been no bleeding since I took a shower at like 10am. Odd. I hop up on the table (when will a woman doctor design a more exam friendly table? There’s nothing remotely comfortable or relaxing about it.) At least, there are no inspirational quotations on posters that you can stare at while being probed. However, if anyone at the PSH Cancer Institute powers that be are reading this, a small TV screen featuring the food network, or the ID channel, or even South Park would be far more effective in distracting me. I sit there on the edge of the table, swinging my seriously unshaven legs back and forth, when – well, hello there tidal wave of blood. At least Dr. K can now see what I am talking about. Gross. I keep waiting. I hear Dr. K on a phone somewhere and then hear him in another exam room. It seems likes it’s been a really long time that I’ve been waiting. Did he forget me? Time is always a little skewed when you are fueled by a brownie, and I am sorta ready for a nap. I don’t want to lie down, because that’s just weird, but I am nodding off. Finally, after what seems like 2 hours (it was 20 minutes) Anne comes back and asks if Dr. K came back. I say nope, so we both sit and wait and chat .Finally, Dr. K returns and we get to the business of ramming instruments of torture into my vaginal cavity. He confirms that there is still a hole in the vagina, but again, comments that this could be a positive thing, and, once again is pleased that I do not try to leap off the table in pain while he does his exam. As long as there’s no pain, that’s a good sign. He says that fistula word again, I shush him. He says that there any odor is probably just because it’s old blood. Double gross. But I’ll take it because anything is better than tentacles and pain. If I have to start wearing Depends to deal with this, I’ll take it, because ANYTHING is better than dragging a catheter around all day and having it cause you even more pain. I don’t think Dr. K or anyone can fathom what it felt like to have that fucking tube jammed in my bladder and constantly abraded by the movement of the cyst. Anyway, we wrap up the exam, I get another prescription for oxy, and sent on my way. It’s 4:10pm.
I gave a brief thought to getting Indian food for dinner, but that would mean exiting the warm car to fetch it. Nope, it’s 20 degrees. I’m not getting out of the car until I am home. As I am exiting, I see Alice, the sweet grandma, and she has still not been called back. I give her a fist bump and tell her I hope they call her soon. I was smart and used free valet parking today, even though I always tip, and stand inside while some poor soul freezes getting my car. I hop in, pleased to find that the root beer I purchased earlier is still delightfully cold. Dinner will be Arby’s. It’s on the way home and no need to exit the car. I’m exhausted. I just want medication and sleep but I still gotta pick up the faux beef sandwiches. Finally, I made it home, and the comfort of my couch. And that’s mostly where I am, except when I am in bed, or at work, or out.
Dr. K is always surprised that I continue to try and work. He said he’d be happy to say I can’t but I tell him I need those couple hours of socialization. He’s fine with that if it’s what I want. I was a little concerned that he didn’t want a CT scan right now, but then I realized, what’s the rush? If the cancer is disappearing through the hole in my vagina, that’s a good thing; if things are status quo, we already know that; and if things have gotten worse, there’s not gonna be a lot to do about it, and the knowledge isn’t going to make me feel any better. So I can wait a month. Bad news is that the scan is on the 27th, and the appointment is on the 1st. Five days of knowing what they find, without being able to see the doctor until Monday. I supposed I should be used to that though.
Well that’s all for now people. I am going to work this afternoon from 2:30 to 4:30 if Andy ever returns home with the car, since, of course, I have work and he decided that he needed to get an oil change NOW and oh, by the way, the check engine light is on and he thinks it’s the O2 sensor. That was two hours ago. So I’m gonna grab a little nappy nap and wait. Have a good weekend, and week, and life, and such. Peace!
Update: I was sitting here thinking how pretty sweet my life has been lately, no drama, bills paid, plenty of oil, etc. Then in walks Andy. There’s a cracked tire rod, blah, blah, blah and it’s going to take at least $1000 to fix what they know is wrong, and that’s not including what is the source of the engine light being on. Car = undriveable. Fucking yay. Well, I’m not dead. That’s a plus. And we didn’t die in a fiery crash when the tire fell off, so that’s good too, I suppose.
‘Twas A Couple Days After Christmas…
Hey there! How was your holiday?
I hesitated on writing this entry because I didn’t want to be a buzz kill, but of course, my self then reminded itself that this is where I go to make the bad go away, and decided I could be happy and sad in one entry and just be done with it. And post pictures. Pictures are always good. And if you don’t want to have any of the sad stuff on you, you just don’t have to read it.
Christmas eve was pretty good. I made crab and shrimp korma. Delicious. Dinner was also okay. I was late, but only because I figured everyone else was going to be late like they were last year. Apparently not. But even when we go there, we couldn’t just get to the business of eating because there needed to be more ice purchased and beer retrieved. We eventually ate, as usual, the prunes, mushroom soup and seafood dishes. Amy put bacon in her shrimp dish she made, not knowing that my family believes that you aren’t supposed to eat meat on Christmas eve. They’re wrong, but I don’t even bother going there anymore because apparently no one but me paid any attention to those Vatican council things in catholic school. Two days of fasting only. Ash Wednesday, Good Friday. Even though I am not longer catholic, or even christian, that shit was drilled in my head by nuns, and will remain a part of my knowledge base forever. Of course, since it was Amy, it was laughed off, but had it been me who dared to bring meat to the Christmas Eve dinner, I would have been banished to eating in the car and ridiculed the rest of the evening. I love you Amy, sneak bacon in every year. So we ate, and then we waited for the nephew(s) and niece to show up for the secret Santa exchange and family photo. After the photo, we are free to leave, but no one leaves until the photo is taken. But I get ahead of myself.
Much of the holiday evening in spent on the back porch because it’s too hot in my dad’s house for anyone to be comfortable for any extended period of time unless you are dressed for summer. I remembered this, and wore shorts and a sleeveless top. Even so, the evening was much more comfortable outside than in, and since my family home is in an alley, it was convenient location for regular medication administration for me. I only had to comment on the racial slurs and reference klan meetings twice. Finally it was time for the exchange. First, we had to debate whether or not we change the way the way we do the exchange (20 minutes) and then another heated discussion about who should go first (10 minutes). Finally, we decided on youngest to oldest. I wanted the box with the sock monkey on it. I didn’t get it. Since I am the oldest child, I went second to last, as only my dad is older than me. I elected not to steal anyone elses’ gift, and picked a box. Here’s where the fun starts. Inside is chick-fil-a cow in a Santa suit in the package that reads promotional item not for resale. I only wish there was video of me saying “oh, it’s a chick-fil-a cow” and then moving it out of the way to see what else was in the box. Tissue paper. Under that, nothing. Nothing taped in the lid. Just a 5in stuffed cow in a Santa suit from a restaurant I won’t eat at because I am opposed to their anti-gay positions. Double insult. Not that I really care all that much about getting a gift, because quite frankly I rarely get things I want, and I really don’t need anything besides an Amazon Fire TV stick, and I am getting that on Friday. But the irony of the situation – I spent all week making sure I met the 25$ minimum and selecting the perfect gift that would be enjoyed by whoever got it. And I got a cow. Oh well. My brother did give me his PSP business card in case I get caught speeding, and a gift certificate for another float in the isolation tank, which is exciting, and I won 25$ on lottery tickets, so it wasn’t a totally bust. Here’s the cow…
Next was the photo – which didn’t take nearly as long as it usually does – and probably turned out pretty well, although I never get a copy. This year we had new guests in our home, Andy, Buck and Mike C, and they were unfamiliar with the practice that if you are in the house when the photo is being taken you immediately become family and are expected to be in the photo. This added a few extra shots. I stood in the back row next to Jamie, who had his arm around my neck so tightly I thought he was trying to strangle me. I did manage to get my head semi-erect for a couple takes. The rest I just gave in. My neck still hurts. Which one of my brothers is Jamie? He’s not, but Jamie is always included in our family photo, and we don’t even take it until he’s there. He’s my youngest brother’s friend. This year, his new girlfriend joined our family too. Finally it was over and we were permitted to depart.
Andy had told me he wanted to put up the last tree, the one I call the memory tree, and decorate it on Christmas eve, and I agreed. He was planning to go out for a bit, and I told him just to get the tree fluffed and the lights on and we’d finish when he got back. I reminded him to put the top of the tree on before adding the lights. I went next door to hang out with the Rooney’s as usual after returning from Christmas eve dinner, but had to leave early because my body was shutting down from all the activity and said to go lie down. I returned to our abode to see the tree Andy was going to fluff and light looking like someone was trying to tie it up with lights. And none at the top, because the lights went on before the top of the tree. I started to take them off, but when I found they were wound around the tree like a yo-yo, I decided that I’d wait for Andy to to come home and take them off. And I fell asleep.
Lo around 2am, Andy came home. I asked him to take the lights off the tree. He was pissed because he was proud of the job he had done. I insisted and he started to spin the tree around like the head of Linda Blair in the Exorcist. I was afraid the trunk of the tree would split because it was squealing like a piggy. Finally the lights were off and I told him to go to bed, and I would fix the tree and the lights, and we’d decorate in the morning. So at 4:45 am, I returned to bed, the tree properly lighted and starred and fluffed. Around 8, Andy came to ask if we could open presents. I said when the tree was decorated. But I wasn’t getting up yet, so it would wait. I relented about 10, we decorated the tree and proceeded to presents. Andy was very excited to give me mine. My first two were an adapter and USB cord. The third was an iPad mini. Unfortunately, it doesn’t work. I turned it on and it went nuts. We tried to hard reset it and nope, not working. So day two of gifts went afoul. Although Andy was thrilled with everything Santa brought him. Especially his new turntable. He was very happy. And he told me I outdid myself with decorating. I returned to bed – the pork for the enchiladas was cooking and I was exhausted. In fact, I spent almost all of Christmas asleep. My body was not allowing movement even if I wanted to. Which was okay – we got Chinese and just chilled. It was a perfectly happy Christmas No stress, no drama, just quiet, and my son.
Here’s the pictures of some of the highlights of the house where Christmas threw up. Andy and I got these really cool painted cinnamon ornaments from a friend of his. They are awesome. I didn’t include the white tree because I couldn’t get a good picture yet.
So that’s the good. Then there’s the sad – like when you realize that you don’t need to go after Christmas shopping because you are not expected to be here next Christmas, so don’t go investing in Christmas displays for next year, because it just might not be happening. I don’t want to say that I have given up hope on that, because I haven’t, and I want to say I believe in my gut that I’ll have another Christmas, it just seems silly to plan a year away at this point. It’s just a reality I face. The days go by and I wonder if this is the last time I will do this or that and the worst is wondering how Andy will get by without me around and I am just so glad I was able to give him this amazing Christmas. Even though I suck and didn’t get around to making Christmas cookies, but there’s still time for that, they’ll just be new years cookies. And today, I found out that a long time friend’s sister who was dealing with cancer, passed away right before Christmas. And I had just sent her a Christmas card, and I thought how sad it is that my card didn’t get to her before she passed, and how difficult this must be for my friend, who was very close with her sister. And I think about them both having to face this nightmare and how it takes and takes and takes and what a mind fuck it is. And I think of all the platitudes people must be saying to my friend, how she put up a good fight, and she was strong (which I am sure she was) but the bottom line is that no one should even have to deal with this. You shouldn’t have to be a “fighter” or a “survivor”- as if she had any control over the rouge cells that attacked her body. Cancer really sucks. It robs the world of some very bright lights.
My next doctor appointment is on Monday. I am nervous about what is next. My biggest fear is not pain or chemo or sickness, but having tubes stuck in me again and having my ability to go about life relatively normally stolen. I can’t do that again. It really affected me mentally and physically. I am still trying to get back to “normal” – which is hard since I bleed all the time – and am once again adopting that luxurious pallor of the undead. The bleeding has me a mite unnerved, but again, I will take it over tubes any day of the week. I am just hoping that when I get sent to get scanned again that things are looking better than ever, and there’s a little mer-person spotted in there with trident stuck into the pufferfish. I am nauseous most of the time now, from the stupid chemo pills, but I have managed to pack on 10lbs over the last week from what I believe was eating chocolate and pizza in my sleep.
Wow, all that to say I was bummed thinking about how there may not be another Christmas in my future. I guess sometimes you have to take the long way there. Now it’s time for another bad movie on Netflix, and some more medicine and sweet, sweet sleep. I won’t be back until the new year, I have things to do. Now go on, and go hug your people tight. And say I love you – a lot. Happy New Year, for those who believe in that sort of thing. Me, I never understood why we get so super drunk and happy because we’re one year closer to death – and this opinion was formulated long before I ever was diagnosed with the c-monster. Dream sweet dreams.
Edit: You may or may not know that I usually come back a day or two after I post these entries and correct spelling, words I never completed and grammar. I am never going to be a proofreader. What I did notice is that these pictures do absolutely no justice to the real magic of the house where Christmas puked. Maybe I’ll take video tonight. I really is a magical thing.
Pufferfish’s Christmas Surprise
I went through and corrected my grammar and other errors in the light of day…sorry for the mess this was in it’s original state – it was late and I was, well..
It’s really not a surprise anymore, because it was part of yesterday’s blog entry, but it was still a surprise to the Dr. But I get ahead of myself here. Be warned, after I relay the story of my Dr. visit using words like vagina, mucus, and probing, I also get a little raw on what I am feeling. So if today isn’t a good day for you, or you don’t want me to kill your Christmas joy, come back and read this on a raw snowy day in February after listening to too much Morrissey and Elliott Smith and already want to put your head in an oven. (for those of you unfamiliar with that particular method of offing yourself, it requires a gas over with a blown-out pilot light. Not your electric oven. That’s called self-immolation.) Then you can get a real feel for it. But as you’ve been warned in the past, continuing to read this is at your own risk – you were warned. I have to purge the noise inside my head and heart.
So, after the horrible ride home with all the bloodshed, and my long-death-like sleep, Andy woke me up to ask if I called the ER yet – and in true sleepy mother fashion I lashed out like a tiger with a thorn in her paw and told him I’d find my own fucking ride to the ER if I needed to go, and if he needed to be somewhere to just fucking go. I was tired. And I went back to sleep. When I finally felt human again, I crawled from my crypt, er, couch, I called the Careline and relayed my story to the nurse on call for women’s health. At this point, I was back to spotting, and wasn’t really too worried. The nurse however, gave me a stern talking to about how when you start bleeding heavily when you shouldn’t be, you go to the ER. I didn’t even try to argue with her about why I couldn’t go the ER in Indiana or Ohio, because I don’t know what kind of doctors they might have there, and if they even have doctors there, or hospitals. Having had the tragic experience of going to Schuylkill Medical Center once instead of Hershey, I know how bad going to an unfamiliar ER can be. I just took my lecture quietly. Then she told me as long as it wasn’t heavy bleeding, I could wait until the morning to go see Dr. K. BUT if I got dizzy or sick or faint, I needed to go to the ER now. I agreed.
Then I went back to bed. My body refused to tolerate consciousness, and since I left my medication in Chicago, I was not a happy camper, even though there was backup at home. I got up bright and early on Monday, made some tea and then took on the challenge of getting an appointment on a clinic day, knowing I might just get sent to the ER. First three calls I got kicked to a voicemail box that was not the one I selected. So I called the Careline – the person who answered my call did not believe my story about being put into the wrong voicemail box, until she tried it and it happened to her. By this time it’s 9:30. She gets me to the right voice mail box, but as I leave my message I am a little nervous, because what if she doesn’t understand the urgency or she’s off sick. But I’ll wait a bit. By 10:30, I’ve still not heard from anyone, so I call back and get Victor. He puts me on hold to see if he could squeeze me in, and finds out that he can’t until he talks to Anne, my treatment coordinator. At this time, I realize I should have just called her directly, but I’ll wait. Around 1pm, I get a call back to be there for 3:15pm. Now that would seem like plenty of time but I still need a shower and Hershey is an hour away. Still I am out of the house by 2 and on my way. I actually get there early and need a water. The closest place to get water in the hospital is the Starbucks and the line is snaking it’s so long. So I just check in. That’s when the fun starts.
My Dr. used to be in the Women’s Health Building. It was always a mix of women seeing the Dr for an annual exam, the cancer women, and pregnant women, but at least we all were seeing the Dr. for the same general area. Now his office is in the Cancer Institute, which makes sense, but it also means the waiting room is almost always packed with people with all kinds of cancer and people waiting for lab work. Even at 3, it’s standing room only. Dr. K is a great doctor, he doesn’t rush, he talks to you like a person, and he actually cares. He’s also a surgeon. This means he runs late most of the time. Like an hour late. So I am not really all that surprised that I am waiting. It doesn’t really bother me, until the whiners start “what’s taking so long?” “my appointment was at 2, it’s 2:55” and “I don’t care, if he doesn’t see me in 15 minutes, I am leaving and too bad, I just won’t see him.” The last one was my favorite. Why wait? Leave now, make things go faster for the rest of us, and you’re so right, that will show him for making you wait, you have cancer and you clearly have an appointment with an excellent doctor, you’re so right, leaving and not getting examined or treated will show him. I realize that future visits will require headphones. Not only because I have to listen to whining, but because Faux News is the station of choice. The waiting room is clearing out, and I am happy to hear my name called around 4:20. Off we go to get weighed, which is surprising stable in spite of the ravenous hunger the Megase causes.
Once in the exam room, I realize there was a clear absence of minions. I thought they were on winter break. While I am waiting, I hear a discussion about Dr. K’s associate,if you remember, the one that wanted to put me on a psych hold? Apparently, she is not building a fan club because the discussion is about how the patient doesn’t like her at all and will go to a different hospital for treatment because of it and wants all her records transferred. I feel vindicated in my refusal to be seen by her again. The nurse takes my blood pressure – it’s off the charts, because I had to endure that stupid blood pressure machine. I tell her to come back again in 15 minutes and it will be normal. After the nurse leaves, I hear a knock and in comes a minion, well, a resident minion, not a student minion. I tell her my story and then she is off to confer with Dr. K. GRAPHIC DETAIL WARNING: What follows will be gross, but there’s no reason to pretty it up, so continue if you dare.
Dr. K arrives with minion in tow. He asks what happened and I tell him that I got tired of having the cyst drained all the time, so my body just decided to pop that pufferfish and let all the goop out. He seems a little surprised. Unfortunately, I can’t escape the probing exam due to bleeding. Dr. K asks if I am sure the fluid and blood are coming from my vagina. I tell him I am quite familiar with my vagina and yes, that’s where the gushing is coming from. I tell him it looks like the mucus-y blood goop that they drained out the last time and showed me in Radiation. I get warned that if I get dizzy or weak, I need to head to the ER, but he believes I am correct. He is not as cheerful about it as I would hope. I don’t know why I would think he would be, but I was a little let down that he was not as excited as I. Poking around in the darkness with probing tubes, Dr. K and the minion concur, the cyst has possibly eaten through or eroded my vagina. The good news is that it’s relieved all the pressure on my bladder and rectum, and that precious kidney, but the bad news is that there’s blood and there are other concerns that makes Dr. K get the serious face and tell me that let’s do another month on the chemo pills, and come back in January after the holiday and we will come up with a plan. He hugs me, and tells me to have a good holiday. His message is loud and clear. He does ask me how much I am troubled by the bleeding – I tell him if it’s a choice between blood and catheters, I’m going with blood every time. Before they found the first tumor I was literally hemorrhaging daily anyway. What’s a little bloody snot? He doesn’t think I need to worry about dying before the new year, so I’m okay with that. It’s now 5:30. I was going to get Indian takeout on the way home. I’m really no longer hungry. I am however grateful that the fucking pufferfish is no longer pressing against anything that will require scalpels and tubes to correct.
The waiting room is empty when I am leaving, except for the Christmas tree. I was the last patient of the day. It’s dark outside, and raining. I like dark and rainy, but it’s weird how the words sink in when I get in the car. Words like “eroded” or “eaten through.” Statements like “we’ll have to figure out what we’re going to do about this, and see what’s going on in there in January.” Threats of catheters. I had a much more positive outlook, like my body was done dealing with the puffer, and was pushing it out. Or that all that visualization about shrinking the cystic mass worked and my body was getting rid of the cancer. Never really went to the the “oh this is very bad, and not a good sign for me.” I mean I knew it wasn’t exactly a “good” thing, but I didn’t really go to “serious development.” There was no pain from the blowout, so that’s a plus. But sitting there in the car, I suddenly thought, what if this is the beginning of things moving to the end? What if my hopes that I can play this out for a few years more are going to come to screeching halt in January? What about the Riot Fest tickets I already bought? What if every thing I was planning over the next few months now has to be done now or it will never happen? The palliative care Dr. asked me what my line in the sand was – where I’d say no more treatment. I started to think about how I am not going to live out my remaining months sick in a hospital bed. I don’t want this to be my last Christmas. And while I know someone out there is thinking you have to be positive – thinking that isn’t being negative – it’s a totally legit fear. Sitting in my car, I was afraid. Afraid of running out of time before I’m ready. Afraid of my body failing me before I can do the things I need to.
And you start making lists of things you need to get done. It’s really numbing. I had to run to Giant to get a few things, and I just kinda wandered around. Then I headed home, trying not to focus on the dreaded bad words, but more on that it could be good, and to just enjoy the holiday. It wasn’t an easy ride home there was a lot of scringing on the way home (screaming+singing = scringing). And I hesitated on telling Andy anything negative. Not that there is any definitive negative, but I know my doctor and I know what he was saying without saying it – but I can’t just pretend it’s all glitter unicorns and dancing cupcakes. The ticking clock is always there..lately I had a few days of feeling almost normal, albeit crazy tired, and for the briefest of seconds I thought that maybe the cancer decided to enter remission. But then there were those motherfucking hawks. Dirty motherfucking hawks.
So since Monday, I am still bleeding. I go back to the Dr. on January 4th. On the plus side, if I lose enough blood, they will give me fresh stuff at the hospital, and I really, really, really enjoy getting new blood. No really, there’s no sarcasm there. I like a fresh pint now and again. The things you learn to enjoy when you have a cold uncaring tumor eating away at you from the inside. Jello. Blood. Headphones. I am kind of nervous for the bleeding to stop, because what if the reason it stops is because pufferfish has reformed and is going to resume blowing up again. But what if the gross ooze is actually doing more harm than good in flowing out of me? I mean Dr. K wasn’t too concerned, and in fact, was quite pleased, that his probing swab didn’t make me leap of the table screaming. That was, by his definition, a very good sign. So now I just sit around, leaking. I am trying my best to make the house of Christmas vomit a joy for Andy this year, even though he says he doesn’t care. I am even going to try and bake some of my amazing cookies this weekend. I am doing okay as long as I stay medicated and take lots of naps. (like the two I had writing this) I even made it into work for two hours today. I am mailing Christmas cards. So while life changes, it still stays the same. I’m not sad or depressed, just anxious and afraid – it will all work out as it has to, I just don’t want it to happen quickly. And just when Punk Rock Bowling is coming to Asbury Park.
Well this was much longer than I thought it would be. I still have several others to finish, but I think it’s bedtime for this monkey. We have almost located all the Christmas bins that Andy denies existing – I found 2 just this morning, but I am still missing the box with the dancing Santa lights, the bottom of the crystal tree, and the ice skating snowmen. I have a lot of Christmas shit even with the purge that has been going on all month. I did acquire a lovely black flamingo ornament for the white tree the other day. I’ll share some of the more charming ornaments with some photos on the ol’blog when all the trees are up, and the house looks like a magical forest. I do really enjoy overdoing the decorating. Who needs tasteful when you can have this beautiful Christmas disaster? Even the outside of the house is improved by my overdosing on lights – you can barely tell that the front porch is crumbling and collapsing. Andy better board up the porch before the skunks, raccoon and whatever else roams the town at night crawl into the basement through the holes.
And that my friends, is it for tonight. Hopefully I will find my way back before Christmas. Now I need to sleep sweet sleep. Buenas noches mi pequeño amigos cucaracha.
An Overdue Thank You for Thanksgiving and Beyond
I’ve written a bunch of blog entries since the last time I posted. I just didn’t want to post them until I could formally (or actually I guess it’s informally) thank everyone who worked together and attended the benefit held for me on November 7th. It was beyond amazing, the food was fabulous, the decorations were fantastic, seeing so many people that I love come out to support me, it was beyond incredible. And can we talk about the donations? From the amazing baskets put together and donated by friends at work, and all the other fabulous baskets donated by friends and businesses (there were about 80!!) as well as all the businesses who made donations either in prizes or food – to the amazing friends who not only organized this “shin dig” as my dad was calling it, but also spent the time cooking, setting up and cleaning up, soliciting donations, putting up with my demands, and can we say boarding planes and flying three thousand miles to either sleep on my couches or in our fine local establishments? And seeing some other friends who I have not seen or hugged in months or years. And my brothers. You all conspired to give me a fantastic day, and I can never thank you enough. I was astounded by how many people came out. I know I say it a lot, but there aren’t words (or words that will be allowed usage by the chemo brain) to properly say thank you. It was a great time, and even if not a single dime was raised, it was enough to just be there with so many people I love. That’s what really mattered. (And that no nuns were offended by my shirt)
This is my best attempt to thank those who organized and donated their time and/or resources, the businesses that made donations, and everyone who helped set up and clean up and cook and bake and just make the day wonderful. PLEASE PLEASE PLEASE if I missed someone, either comment here on the blog or send me a text or email. I will fix it. And feel free to print this out or refer people with a link who don’t have facebook or twitter to read it for themselves. I am hoping to put a thank you in the paper, because let’s be honest, if I were to send thank you cards, Andy would find them in a stack to be mailed about six months after I’m dead, because in order to send a thank you card, I would have to make it (yes, I know they sell them, but this is me we’re talking about) then I would go full tilt on card making until I had half of them done, and then lose interest or get sick and then I would say, I’ll do it tomorrow and then it’s May and people think I am an ungrateful bitch because I didn’t send a thank you card, but really I will still be working on them. So without further ado…
First and foremost, without these people, the benefit would never have happened: Lori, Lisa R, Anne S, Heidi E, Michelle G, Lisa S, my brother Stanley, KY, Mary B, Gina, Renee, and B aka Mary Bridget. (And Louise, and of course, Erin) Also thank you to the adult and minor children who were volunteered by their parents to help out. Thank you for all of the time you put into this, and being my friends. More for being my friends, because without your support, I would not have survived this journey as well as I have for so long. You may not think you did anything major, but just knowing you are there means the world.
Next, I need to thank my amazing friends at work, too many to name here. If you could only have seen the baskets they donated for the basket auction – they blew me away – and probably raised a good chunk of change. Special thanks KY, Sue Y, and Patti M, for also making individual basket donations as well. Every unit in my office created a basket by their unit and they were incredible. The generosity didn’t end there – my CYS friends also donated drinks, made food, bought paper products, had fund raisers, and just gave moral support.
Major thanks to the California girls, Debbie, Jeanne, Catherine, Cindy and Dianne (and her boy toy) for braving TSA and flying east during the beginning of fall/winter hell. We fell back into conversation like the decade or more since I’ve seen some of you was never there. I am sorry I was still too weak to be a better hostess, but I think pizza buffet night was pretty awesome. I missed our easy conversation and endless laughter. And to my beloved hummingbird friend, and her awesome mother, thank you for choosing to stay at Chateau Pecky, some of the most curious accommodations you will ever experience – where lights turn on in the middle of the night for no real reason, and just as you fall asleep the furnace kicks on. It was a delight having you as guests in my home. I’ll get some more cancer if it means you girls will visit again. And thank you Ashley, my shark sister, and Roy for making the long journey to the ‘hood to hang out with us as did my wonderful cousin, Ginny. Sharky it made my day to see you. And to Joe, Amanda, Danny, Tom, and especially my surprise guest, Stormy, thank you too, for making the trip – you will always be like my very own children and I was glad to see all of you there. You always make me smile.
And Andy – thank you. For putting up with my idiosyncrasies, my whining, and for your diligent cleaning even after I freaked out. You know you bear the brunt of my moodiness, and I am sorry, but thank you for your help in all of this.
And thank you Stanley for the awesome birthday cake. It was delicious.
And thank you Lori and Denise for your part in making me able to allow people in my home again.
Now for the list of donors and businesses:
- Anthony’s Pizza in Frackville
- Friendly’s in Pottsville
- Capitol Food Market in Shenandoah
- Kowalonek’s in Shenandoah
- La Casita de Familia in Shenandoah
- Lucky’s Corner Deli in Shenandoah
- The Pizza Shop in Shenandoah
- Who’s Place in Shenandoah
- Vernalis’ Restaurant in Shenandoah
- Boyer’s Food Market in Shenandoah
- Walmart in St. Clair
- Melissa’s Hair Design in Shenandoah
- Little Venice in Shenandoah
- Francesco’s in Shenandoah
- The Lyric in Shenandoah
- Pet Brothers in Shenandoah
- Yuengling Brewery in Pottsville
- Dunkin Donuts in Pottsville
- Angie’s Hair Salon in Shenandoah
- Kay Lex Salon in Shenandoah
- Park Restaurant in Shenandoah
- Boran’s Bakery in Shenandoah
- Antz’s Refrigeration in Shenandoah
- Chris Ozcoustic Oslar in Ringtown
- William Penn Fire Company in William Penn
- Gaultier’s Distributor in Shenandoah
- Denise D in New Jersey
- C&L Creations in Shenandoah
- Green Loving Naturals in Pottsville
- Liz Noon at Trio Salon in Pottsville
- West Street Pub in Shenandoah
- Kidspeace in Pottsville
- Kathy H at Access Services in Orwigsburg
- Eddie M
- Kayleigh L
- Brenda S
- Olive Garden
I tried to put hyperlinks for the people/businesses that I could – please give them a click if you can, and if you are local – please support them as you can. Again, I am so grateful for their generosity.
Additionally, the Shenandoah Knights of Columbus gave me a very generous check, as did the Chris Antz Memorial Fund. Thank you to my long time friend Denise D. who donated Flyers tickets and to Kellie for my Fuck Cancer shirt. Also I received very generous donations from Jeanne and from Catherine’s massage therapist who wants me to go to Ireland as much as Catherine does. Well, ladies, we’re going!
Most of all, thank you to all the people who came to the event, or shopped and dropped. Thank you to ever person who made a donation, whether it was to me directly or to Gina’s Pennies for Pecky drive. I was astounded at the monies that were raised. I can’t thank each of you individually, because frankly, there were so many people at the benefit or who just made donations, that I can’t name them all. But know that whether it was pennies or T-bills, your contributions made a difference, and if you attended, I hope you had a great time, ate a lot of good food and enjoyed the people, I know I did. Until I had to go puke outside. But that was over pretty quickly.
I, of course, have a shit camera on my phone, so I didn’t take pictures. Andy used my dad’s camera, but all of the pictures he took were blurry. So I am posting what I have received from friends, Thank you for taking them. There are pictures of the baskets, me, my cake, my friends, the tables and some of the people who attended. I wish someone got a shot of the food…it was incredible – roast beast, fried chicken, chicken parm, mac and cheese, mashed potatoes, scrumptious filling, blind pigeon casserole, polish meatballs, italian meatballs, pierogies, baked ziti, porketta, chicken and dumplings, hot dog, salads, veggie pizza, subs, meat and cheese trays – there was food for days. And then there were the bacon wrapped bang bang meatballs that Michele made especially for me. And banging they were.
Anyway, I started this at 9pm and it’s close to 3am. Wow. I just want to say one last time that I am so grateful for the amazing generosity, love and friendship that was so obvious from everyone involved in, and attending the benefit. I really really really appreciate it, more than you know, and you are making it possible for Andy and I to have experiences that we would otherwise not have if not for your kindness. Yes, the benefit raised enough money for Andy and I to do the only thing I really had on my “things to do before it’s too late list” – go to Ireland. There was also enough money for me to splurge on a 32” flatscreen. (yes, you read that right, 32”), get a new vacuum that does not spew the dust back out as soon as it sucks it in, and to make sure our electricity remains on for many more months.
I only put first names and last initials if necessary to allow people privacy. I’ll be happy to add your last name if you want. Enjoy the photos, and Happy Thanksgiving. I have so much to be grateful for – a roof over my head, the day with my son, food in our fridge, no one blowing up our house and the love of amazing friends. Thank you for everything – the laughs, the texts, the couches to lounge on and watch football at your house, etc. etc. I can’t describe what that kind of support feels like. Love to you all and a pleasant day with the people you love. Stay tuned for several posts in the next few days. Sleep a happy sleep. I’m off to attack the ham before I pass out. I got a turkey to stuff in a few hours.
Randomosity
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.
Fall Out Girl
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.
Slice and Dice With Minions – Part Dos
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.
Because Sleep Is My Best Friend
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.
Peace and pumpkins, people. It’s time to squelch the pain with another pill.
Mission Gyro: FAILED (or What Maps Are For)
I wanted a gyro for dinner. I was headed to Nesquehoning where there exists an alleged Arby’s that serves this coveted treat. Yes, I know it’s not a “real” gyro. But it’s tasty. And what I wanted. And I was hungry. It’s not really alleged. I’ve been there. And had said gyro. This time however, I was trying to find it from a completely different direction. Yes, I had my cell phone and I could have mapped that shit, but where’s the fun in that? I was going to guess where it was. Bam. Gyro is minutes away.
I know the road where the Arby’s is. I just need to find it. I’ve gone there on a back road before, and though it was in the middle of the night, and few lights or roadmarks were to be seen, (and it was two years ago) I believe I’ve retained enough details to easily locate my dinner with minimal difficulty. Of course I can. Toss in the added factor that I am on a long-acting narcotic, I’m tired and according to my treatment coordinator, it probably isn’t my best decision to be driving, I will still continue on this fool’s journey. I make the first turn of my adventure. Crossroad? Left, right, forward. Um. Left.
Here’s where I tell you that my sense of direction sucks. Which is why I also have a compass app on my phone as well as the maps app. Am I using either of these? No. That would only make sense. And there’s no need for sense on this road trip. I decide at the next intersection that a left turn is in order, because another left turn is probably required at some point, so let’s just go for it. It only takes a few miles on the road to realize I am driving in a direction that is probably directly opposite of where I would find Arby’s because I am on the side of a mountain. I know this is definitely where Arby’s is not. I suppose I could turn around, but I know I’m not going to. Because becoming lost in my attempt to find my way to dinner has just become the allegory of my life.
I can see how this has caught your attention. I will explain. I realize as I am driving along, that the scenery is gorgeous. I know I’m not headed in the right direction. I know what I should do is turn around and find my way back to what I know, but I’m not going to. I’m going to keep driving and see where I end up. The gorgeous autumn colors of the mountains have caught my attention. I’m not paying as close attention to the road as I probably should be because I am looking around. I’m pretty much alone on this road anyway. I spy a lake. I decide to tuck this nugget of knowledge into my “check that shit out another day” file, even though every fiber of my being wants to go see it now. I remind myself I am on a mission, and I am already headed in the wrong direction. My curiosity is forcing me to explore this new road. Normal people would turn around. Normal people would look at a map. Normal people would have looked at the map first. I am not normal people.
This has been my life. I know where I need to go, most times, even how to get there, or how to figure out how to get there. Sometimes I am on the right road, and make a wrong turn, or sometimes I am on the right road and let something else distract me, or sometimes I make a wrong turn right at the start. And instead of turning around and correcting my course, I just plunge headlong forward. I justify it in my head as “learning experience” – sometimes I get so lost that I never get to where I started, but in that journey I get so many lessons and rewards, as well as setbacks and deadends, that even when I fail (IE: no gyro for dinner) it’s okay, I’ll just make do with something else (IE: sucky Turkey Hill mini pizza). This has been my whole life. But so far, instead of enjoying the ride, I’ve been cursing my stubbornness and cursing the fact that I didn’t turn around. I forget what beautiful (and dangerous) things I’ve seen along the way. I forget that the success was in continuing to go forward, despite the obvious signs that this was not how I was supposed to go, but going ahead without reservation. Not traveling recklessly, like crossing into clearly the wrong lane, but sometimes driving onto the shoulder and suffering some bumps until I get back on the road. Sometimes traveling too fast and hitting a pothole that jars me back to reality. Sometimes just losing track of time that I miss out on something else. My life is a series of wrong turns that start off as trips to other places. I sometimes get to where I was going, but even when I don’t, even when I break down along the way, it’s an adventure, and I see a lot of cool things, and sometimes I learn the hard way that some chances aren’t going to work out.
So what did I see on my trip today? Beautiful scenery, gorgeous houses tucked in the woods. Log cabin. An amazing line of gnarled trees to go back to photograph another day. A lake to investigate, a new alternate route to a destination. Knowledge that next time it’s a right turn or straight ahead instead of left and left. Knowledge that Turkey Hill pizza sucks and that I shouldn’t have an energy drink if I am already cranky. Sunbeams. And the knowledge that I just need to keep driving.
So this is the lesson grasshoppers. It’s okay to use a map. That’s what they are there for. However, when you choose not to, you also choose to accept whatever the road you follow brings you to. Good or bad. Yummy gyro or nasty pizza. You can go probably go back for gyro another day, but if not, you can still have other delicious treats. Unless you refuse to let go of your desire for the gyro. This is all very zen.
I leave you with a picture of how you can take something ugly, like the stubs of dead bushes, and turn them into something magical. Or you can leave them like ugly remnants of another life – the choice is yours. Every time I see them I think of the great imagination it took to transform those dead sticks into a roadside coal reef to make the day brighter for every person who takes the time to notice it.
But wait, there’s more. There’s this tree.
It’s at the top of a hill. A hill in the middle of a cemetery. You can see death all around it, or a magnificent tree at the top of a gorgeous hill on a sunny afternoon – which leads me to this parting thought…I saw a retirement/nursing home today adjacent to a cemetery. It made me think about the home’s residents – does it trouble them, this reminder that their time is now so limited or is it comforting to have the constant reminder that every day is precious and that the reality of death keeps them focused on the present. Just a thought.
No news from the Dr. BTW. Pain is still my constant traveling companion. Always screaming for attention in the background. Hopefully tomorrow brings answers. But for now, it’s carnage and death, SOA style, my guiltiest of guilty pleasures.
Be well pretty ones. If you’ve got gyros – eat them.
The Only Guarantee in Life is That Things Will Change
Just a quick update, because I feel like sometimes I just whine and I don’t feel like being that person today – it was a gorgeous early fall day with the blue-est of blue skies and a nice breeze. I made an awesome dinner and spent an hour or two with a good friend and things were progressing nicely. I was sorting through craft shit, had managed to get through another week of not overdrawing my checking account. The car is behaving nicely, I was making crafty things, laundry was getting done and I was, dare I say it, looking ahead to the future – what was next, trying to get past the fear of letting go of things and making huge changes without a safety next. Try to not let the world define me. You know, spiritual and philosophical advances and the like. Trying to find myself.
And the universe’s response to this?
Hey, guess what? Your landlord wants to sell the house you are living in. NOW.
Thank you, Universe. Apparently if I don’t make change quick enough – you will do it for me.
As to what’s next – who fucking knows? All I know is that I need to remember that anytime I feel comfortable in where I am at, and where things maybe going, that it’s all going to fall apart in a few hours so don’t even bother.
No worries – I’ve been here before, and I’ll get through again.
I’ll be spending the next few days cleaning, not that it’s going to make much of a difference in the way this place looks – but maybe that will be the motivation to downsize even more. Anyone who wants to come over for Disaster Fest 2014, feel free to text or call, and bring a hazmat suit cuz it’s gonna be ugly.
50.5 Hours ‘Til Depufferization
I am so restless. Monday cannot come soon enough. I had to stop taking motrin last night because of its blood thinning properties, and I’m out of tylenol until later so I’ve been nibbling on percocet trying to make the pain go away. It’s not.
.
In an effort to distract me from writhing about in bed, bemoaning my situation, I decided to give cleaning out my closet a go. I applied the fifteen minute rule, and actually was at it nearly an hour. I got rid of a lot of things I won’t/don’t want to wear again. There are still some things I can’t get go of including the very Victorian/gothic long black dress I bought trying to hang on to my goth past, and a crushed red velvet mini dress from the same desperate period when I dreamed of returning to my glorious youth. I tried – I event took the black dress of the hanger, but in the end, I clutched it my hands, as my opiate-sotted brain harkened back to the days of pale skin and clove cigarettes and dancing wildly to Echo and the Bunnymen, the Jesus and Mary Chain, and Love and Rockets. Sigh. I realistically know that the dresses will hang in homage to my youth, never to be worn again, the same way there’s a pair of size 5 shorts in a box somewhere from when my short-lived border-line skeletal hips slipped them on one summer day following my high school graduation. Strange the things we treasure. Now, I’m lucky if I could get them over my ankles.
.
Even though the pain is still a constant ache despite the medication, the sedative effects are doing just fine. My eyes keep slipping closed and I should probably take a little nap because I’m going to head in to the den of babysnatchers to get a few more things done before I am off on Monday and Tuesday to have my procedure and biopsy done. They pushed the time back to 12:45p so a pathologist can be available when they retrieve the tiny chunks of flesh from SPFXL from snappy steel jaws that will be tearing them out of me. Of course, I don’t expect to have the pathology completed before I am released to go home, even though I secretly know they do because all they have to do is look at the sample and it’s either normal or it’s not. I don’t need to know how normal or abnormal the cells are, I just need to know one way or the other.
.
Not that it really matters, because as I was driving back from Pittsburgh on Thursday night, I was on Interstate 99, and if you have never been on it, there are 11 miles of the most beautiful stretch of highway I have been on, outside of Hwy 1, aka the Pacific Coast Highway, in California. The sun had just about set, the hills were green and purple and some of PA’s tallest rounded mountains were rising above the fog that was settling into the valleys amongst the farms and random houses spotting the countryside. It was so magically beautiful, I kept waiting for it to end, and each curve of the highway just became more breathtaking than the previous one. At one point, when the sun had almost sunk below the horizon, there was this lone cow standing next to a barbed wire fence on a hill close to the highway, silhouetted black against a violet twilight and I could not even remember when I saw something so simply marvelous. If I wasn’t moving along at 80mph, I would have hit the brakes and captured it on film. Fortunately, I can still picture it in my head. And I realized, after travelling 500+ miles that day, in the car, alone with my thoughts and in silence most of the car ride, that there’s nothing to fear, no matter what happens next. In that moment, it didn’t matter if I was going to live or die, because everything is connected and timeless. Yes, I had brief reminder of nirvana, one of those glimpses of what being human is all about, and why nothing is ever lost, why we are here, and why it matters, and that whatever comes is just another lesson for me to learn. It’s all going to be okay, even if it seems like it’s not. And I’m okay with that. I forget how strong I really am, and how much I have gone through and how I am so grateful for everything I’ve endured because generally speaking, it has made me the pretty fucking awesome person I am. And even all the not so positive bits, the parts of me I don’t like, are just challenges yet to overcome. Including the SPFXL.
.
![surgery_cartoon[1]](https://peckalicious.wordpress.com/wp-content/uploads/2014/07/surgery_cartoon1.jpg)
.
So now that I have waxed philosophical for the day, I’m off to get ready to face the day and head into work to tackle a few things so I can come back after the probing and get back to the grind. Then it’s off to Presto’s 3rd Birthday Party. Have a great weekend, friends. And if I don’t check in before I’m rocking the CT scanner on Monday while I’m probed like an alien in a secret lab out at Area 51 in Arizona, send me some good vibes – especially that they have some good jello in the recovery area. Peace.
The First Offensive, Second Edition
We’ll be going in to try and attack the SPFXL (see previous entry for clarification) which we determined today to be the size of my small desk fan. I’m just waiting for a procedure date – my treatment coordinator told me that they asked for it to happen in the next seven days, and if they don’t schedule it within seven days, she will call and tell them to make it happen, because I am symptomatic (based on my near-encounter with the ER yesterday). On the plus side, most of today was pain-free, or rather, pain-minimum, because for the last six weeks, I’ve been in pain to varying degrees.
.
Like the last attack on SPFXL, when it was known as PF, there will be an attempt to aspirate it, followed by the painful snapping of flesh from the beast itself for purpose of looking for the C-monster. The difference is this time, it will be more pieces of flesh being torn from me, and in more areas to see if there is something that was missed last time, resulting in the return of SPFXL. They still will force me to be awake throughout the whole ordeal, but at least I can play with the monitors and make them think I am dead several times for my own personal entertainment.
.
I’m trying to be positive, but pain puts a damper on that shit, especially when it feels like sharp spines in my lower back most of the day. The fact that it is in exactly the same are is a plus, and as I was told, I shouldn’t worry about it, it’s just concerning, not alarming. Of course when you have a blob the size of a newborn’s head inside of you, you are just a tad concerned. I will keep you darlings updated, I’m just not feeling the joy tonight.
.
Sweet dreams my pretties.
Pufferfish Becomes Superpufferfish XL
Who ever said ignorance is bliss should have a monument erected to them. I believe I would be so much happier if I was stupid. There’s a price to be paid for knowledge, and for having information at our fingertips on the internet.
.
I won’t belabor the issue – my most recent CT scan (yesterday) report appeared online last night. In addition to having a ridiculously low and almost non-existent level of thyroid hormone (I knew it was low, but this was way below the low end of the measurement scale) I had the joy of reading that the former pufferfish has, in less that four months, become superpufferfish xl. That’s right, the pelvic mass that we all thought was defeated in a previous episode has not only recovered but has evolved like a Pokemon, say like a Igglybuff transforms into a Jigglypuff (see images below). It is now the size of a pink grapefruit or softball instead of a common baseball. And being that it is a holiday, and my dear Dr. K is out of the office until Monday, and probably did not feel compelled to check my medical records at midnight as I did, will not see the transformation until Monday, and they are not going to call me until Tuesday. I know my treatment coordinator saw it, because she called me about the thyroid thing, and left a message about that, but nothing about the SPFXL (Superpufferfishxl). Back to the waiting for the news.
.
.
Of course, as is typical, I use the sacred interwebs to research this evolution. Things that grow so fast are often malignant. The only positive I can derive from my online inquiries is that there is no change in the nearby lymph nodes or other organs, which is a good sign. Whatever it is, I will deal with it, but I hate being in the no woman’s land of not knowing. I can feel it fighting with the other organs nearby for space, particularly my bladder and stomach, and it is annoying. Not to mention the pain it is inflicting by its inflation as it rests on the nerves in my lower spine and coccyx. (I should state that I love the work coccyx). Either way, it is going to be jabbed and poked and prodded with sharp needles and cutting tools, and it’s gonna mean that there’s gonna be no Riotfest in my future because I’m gonna have to take time off for hospital visits.
.
And I’m scared. That actually goes without saying. To deal with the fear, I’ve been binge eating because nothing conquers fear than a package of limeade oreos, Chinese food and coolattas. Which makes me more uncomfortable. But I am letting myself have the 4th of July to wallow in self-pity. Tomorrow I’ll take an extra effexor, and get out in the world and see some babies I don’t have to take away from selfish, self-absorbed and self-indulgent adults, and remember just how strong I am. And see fireworks. The world is a better place with fireworks. Or explosions. Explosions are good too.
.
Celebrate the day, my little firecrackers.
.
The Racing Mind at 1AM Edition
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.
Oh Yeah! We’re Puking Rainbows Again!
So, massive doses of vitamin B, medication, meditation, and writing kept me from sinking into the sucking abyss. You can all go back to poking me with sticks without fear of my mental breakdown again. It’s something you can’t even explain, but I will try to – it’s like waking up one morning and you just don’t even care that you have no money, and no gas, and there’s nowhere in walking distance that you want to go, and the house is a mess, and you have a stack of bills, but that’s all okay, because you’re fine with just hanging out at home, and it isn’t even depressing. Like that giant safe that was dropped on your soul from forty stories above has been pushed off and you can breathe again, and think of sad things without having a sobbing meltdown. You eat things other than chocolate and ice cream. You don’t really care that you aren’t chasing every dream you ever had, you’re just happy that you don’t have to fight to get out of bed, that you are back to considering a future, and the physical feeling of drowning under the weight of your tears is gone. Boom. Like that. Even though I don’t have the power to turn my depression on and off like a switch, some times it comes and goes like someone else has the power to control it. It’s not like anything changed in my life to make it better, it’s just I woke up on a perfectly gloomy day, continued to do the same mundane things I always do, but suddenly, it wasn’t like physical torture anymore. And I am grateful for everyday it gets to stay this way.
This is a good thing because two year check up is in two weeks. I do believe my baby alien re-inflated itself after the last tortuous surgery, or at least that is what I am hoping. Actually, I’m not hoping that it did, I am just hoping that that is all that is wrong, because something is, and rather than whining about it, I’ve been just patiently waiting for the next day of probing to address it. It’s not like waiting a month would really make a big difference anyway, but I’ve got pain and weird sensations going on in ground zero and I know something is up. I’m pretty sure I’m still cancer-free, but I think that the poking around at the chrysalis in my former uterine cavity did little to eliminate the problem and was just a stop-gap, and at some point it’s gonna be either me, or a qualified surgeon, going in there with a knife and cutting that shit out. And if it is cancer, well, not much I can do about that except treat it – it’s not like it’s flesh eating bacteria or a bot-fly larva erupting from my skin. See? I come out of the darkness, and I’m all like, who gives a fuck? For the record, Vitamin B is nasty, but clearly works. Or I believe it works, and thus I prove the placebo effect valid once again.
Hopefully you are all breathing a sigh of relief at my return to normalcy. Normalcy is relative though, and I’m still pondering the secrets of the universe and scheming great schemes. Andy has agreed to go to Riot Fest with his mother, and I am buying his ticket for his birthday. The last time we went on vacation together was when he was five and we went to Disneyland for a week for his birthday – Riot Fest will be much like that trip, except, I won’t be charged with child abuse if I smack him in the head for being whiny. In other words, he will fall asleep in the car, whine about being hungry, complain about the music I am listening too, wander away and want to go in the opposite direction of wherever I want to go. And like when we went to Warped Tour to see AM! and Pennywise, he will spend all his money, and come looking for me only when he is covered in mud and has lost his shoes and is hungry. Mother and son bonding at its finest. If you want to join us, let me know – I will be staying in a hotel – he wants to stay in a tent – or the car – or on the ground – and as he will ditch me to see the bands he wants to see once inside the gate I will technically be alone. We’re driving because I love a good road trip. You can get tickets on layaway, which is the only reason we can afford it – because the universe has some sort of issue with me having a bank account with any sort of substantial balance in it (grasshopper).
Well friends, it’s almost time to make something for dinner. Maybe if you are lucky, I will make something amazing and you will be treated to pictures of it on FB. Have a great rest of the weekend, and Happy Father’s Day to all the wonderful dads out there, including my “son” Corey, and my dad, if he’s ever allowed to return from where he is being held hostage at my brother’s home (detention camp) in Maryland, and to all the moms out there who are filling in as dads. And the men who are like dads to the dad-less. Fight the power!
Sunday, Mopey Sunday.
First, I’d like to just put my personal opinion out there: Ladies, I’ve grown used to seeing your naked pregnant bellies popping up in my newsfeed. I’m happy for you, I personally loved being pregnant. I do not however, have any desire to see your vagina. Not now, nor during childbirth or the 3d image of your unborn child. Babies grow in a dark womb for a reason, if we were to admire them during their spawning, they would mature outside of the darkness. I will see plenty of pictures of your offspring once it arrives, let me have the excitement of not knowing what it looks like before it’s done. Birth is a miracle, I know, but it’s a yucky, creepy, messy miracle, and if I wanted to see it every day, I would have become an obstetrician, instead of investing tens of thousands of dollars in a master’s degree in American Studies which I don’t use daily to earn the fear and hatred of scores of families as I invade their homes to protect their children from poor parenting. Please let me defer the joy of meeting your child on the interwebs until after they are detached from the placenta. Your cooperation is appreciated.
<
Advisory: I am still in the black void of depression. You’d probably be better served eating ice cream. Or watching Netflix. If you continue, please remember that this blog isn’t a cry for help or attention, it’s my therapy to work out the shit that’s in my head. I enjoy you sharing my world with me, but not because I need you to do anything about it.
<
Alas, the joy sucking depression continues to oppress me. I enjoyed another Saturday in bed yesterday, although I managed to leave the comfort of my completely uncomfortable bed to shop for food. Today I sprayed toxic chemicals in the shower. And tried to kill the giant fly that has invaded my space to torment me. I wake up crying. I peek out the window at the sun shining and wish for rain. I think about leaving the house and really only want to go sit in the peace and quiet of the cemetery so I can be one of those people that people visiting in the cemetery wonder why that person is sitting there in their car. It’s quiet there and there are very few people who will try to engage a stranger sitting in her car in a cemetery in casual conversation. Cemeteries also have squirrels and crows to entertain you. At least it’s out of the house.
<
One of the hardest parts of feeling like this is trying to get past the whole belief that it’s a mindset and not a chemical imbalance. Like I could somehow just think positive thoughts and shit would magically change. I want to believe this. I spend a lot of time thinking how much more fortunate I am than the people who lose people they love, have to hide who they are, are homeless, have physical disabilities, are dying. I see these stupid movies about people who are dying and have this great zeal to live every minute and all it does is make me feel bad that I can’t turn this shit off and be like that. Why can’t I just be enthusiastic about every fucking thing? And the self-loathing increases a hundred-fold. Because not
only am I in the throes of depression, I am a completed and abject failure because I live a fucking mediocre life and don’t do amazing things. Or even semi-good things. Or even things. Unless you count blogging and watching Snapped: Killer Couples marathons as things.
<
Ugh. I can honestly say that this isn’t the worst it’s ever been. I’ve been in far darker abysses (abyssi?) than this. I’ve hated happy people more bitterly and I’ve felt less human. I guess that could be considered a positive. Ironically, I continue to do some of my best life coaching for others while I hate everything about my own. I really want this fly to be dead. I really want no advice or consolation. I just want to go to sleep and wake up with enthusiasm to face the day. That’s not to say that I don’t have any desire to do things – one of the great benefits of depression is that in the attempt to escape the horror of one’s current predicament, one often finds themselves dreaming of what they should do to make their life better by choosing rather impractical solutions. Like quitting one’s job and buying a houseboat. Or a tiny house. Or taking to the road in a car and living in it. Or getting a dumpster and throwing everything you own into it. Or spending an inordinate amount of time on how to transform one’s life, because you know you have no desire to do it. Or doing digital jigsaw puzzles, hoping that this time, the picture won’t include some kitten that you just want to smash with a hammer. Or wishing you could live in a commune with people who laugh at your nerd jokes and want to talk about books and philosophy and raise organic vegetables and alpacas and pigs.
<
Ultimately, you get up, take your pills, suffer through another day, knowing that one morning this seemingly endless slog through the days will have ended, and you get an awesome day, where you laugh and cry and make amazing memories. And then you’ll have another hurdle tossed in front of you and another setback, but you’ll make it through, marveling that other people have lives that aren’t lived in spite of the blackness. In the meantime, I’ll feel guilty that I can’t be like other people and that the way I feel right now makes other people feel uncomfortable, and that I can’t just turn it off.
<
Or maybe I’ll take a shower. And move my contemplative angst all the way out to the front porch.
<
Soul Sucking Sorrow No Puppy Can Cure (or Even Cute Babies)
Caution: It has come to my attention that sucking blackness has arrived for one of its destructive visits. If you care about me, you will not ask me how I am, or suggest happy things or try to elevate my mood. Trust me when I say I am on it, but as anyone with depression can tell you, depression isn’t something you switch on or off, or can wish away. I will get through this as I have through every other episode, but not without my usual bitterly wry assessment of what this torment feels like.
.
If depression was a circle of hell, Dante would have described it as being damned to an unlit coal mine inside of a supermassive black hole in which there was a bubbling pit of tar and the damned would be drowning in it, while crying tears of blood. No, really. It’s exactly that. When it’s under control, it’s a black cloud following me around, rumbling and grumbling, but not surrounding me. Today, I feel like my soul has been ripped from my body and I start crying at fucking butterflies. I thought I was just being cranky on Saturday, but I knew then. I tried to sleep it away. Nope, not gonna happen. So I got out in the sun and took some vitamin d and b and drove fast and screamed along to music at the top of my lungs until I was sure my throat was bleeding. (I am sure there were also some innocent ears bleeding too, because that stereo in the car is an harman kardon, and it’s LOUD, and I was singing/screeching louder.) Unfortunately there are pauses between songs during which sorrow spilled out of my eyes like rain in gutters after a storm.
.
Now I’m in it. It’s like a huge fucking weight crushing me. Squashing me like a bug. I can’t talk about it because it only turns the sobbing on. Talking doesn’t help it. There’s nothing I or anyone else can do. I have to ride it out. That’s what sucks about this disease. It’s a waiting game or, if I want to be generous, a challenge. Writing does help, because it lets me give it shape and form, a giant fucking monster made of molten coal that squirms and oozes all around me with its fucking stupid gaping mouth making sucking sounds. It just sits there, mocking me. And all I can do is write, jam b vitamins down my throat, take my happy pills and be grateful that I still have the strength to get out of bed and go to work. The only plus of this despicable plague is that I also become brutally sarcastic. I should have known I was teetering on the edge when I decided to write the “I Hate Everyone and Everything” song. Which was really just a title, and no lyrics.
.
I woke up crying early Saturday morning. I had had the most vivid dream, which I may or may not blog about another day. I woke up crying. It should have been a clue. But no, I wanted so badly to believe that I had this shit locked down, I wasn’t accepting it. I wasn’t even buying it until I was driving to an appointment today, and I started weeping like a banshee. Thank dog for sunglasses. But I pulled out the happy face, dried my eyes, and got through the afternoon. And mourned the fact that I need to stay put for another three years because I need fucking healthcare. Yes, we have guaranteed healthcare now, but just like before the affordable care act, there is healthcare and then there’s good healthcare. I have good, even excellent, healthcare, and I am stuck in a job and a state that add nothing to my rainbow of happiness because I have a body and mind that have defects that require superb medical attention. Stupid body. Stupid brain. And just so you can get a really good understanding of how my depression works, as I was driving I saw a perfectly lovely bird flying in the gorgeous blue sky on a delightful June day. For about 30 seconds I though “I wish I was a bird” and then bam! My brain switched over to this: no, I don’t want to be a bird, because I would probably be starving most of the time, or attacked by a hawk or a vulture or shot to death by some sociopathic child with a bb gun. Or pecked to death by other birds. Oh look at those pretty rhododendrons, how gorgeou….wait they are already dying, everything is dying, death everywhere, summer is almost over, it’s going to be winter again, I hate winter, why does everything die, why are we even here, life is hard and it sucks and I am going straight to bed when I get home, I don’t even want to talk to anyone or see anyone, ever. Yes, laugh, it is funny, and also horribly sad.
.
On the plus side, I still get up and go to work. I put that smiling mask on and function, because I have to. And I cling to the fact, that it will pass. Hopefully soon, because I have enough shit in my life that I don’t really need the added bonus of a sucking pit of despair right in the center of my chest (although I wouldn’t complain if it actually sucked out fat instead of joy).
.
And that is that. I am going to go brood, mindlessly wishing that the sky would turn black and we’d have an awesome thunderstorm, because I appreciate when the weather mirrors my mood. Maybe I’ll get out some black paint and do a depression self-portrait that someone will buy for $10 and later sell for millions after my death.
.
That is all.
This is not a tar monster.
I was not able to upload that picture.
So instead I uploaded this small monkey
who is contemplating tearing the heart out of this white pigeon
others often call doves.
Good Weekend? Bad Weekend? You Pick.
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.
.
Monday Night MERS
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.
Black and Tan and Blue
I’m waiting for my laundry to get done so I can hang it up in order to be dry for the morning work. I suppose I should do this earlier in the evening, but I was unwinding from another troubling day of working for the man.
/
As you may or may not know, I finally made it to the ocean. The Atlantic, not the Pacific, but the sound and smell of the sea took cleared away a lot of things that can only be washed away by something so vast and timeless as the ocean. I needed that. For those of you who have not seen both, I have to be honest when I say the ocean in northern California is a far more powerful force, even on calm days, than the Atlantic in New Jersey. Not to mention that the shell selection is somewhat better, and there’s more beach glass, and sea otters and sea lions, maybe an elephant seal. But still, the ocean soothes a lot in me. And made for a delightful Mother’s Day, even though it meant spending much more money than I intended to. I am somehow okay with that though, because every cent was worth hanging out with my son and laughing. It reminded me of when he was a little, and we would take road trips and adventures to see and do things we hadn’t done before. I miss that. And I miss the spontaneity – not many people I know are willing to do things at the drop of a hat, and thanks to my excellent child rearing skills, Andy has that inherent spontaneous streak. The beach trip came about at breakfast when I said, hey let’s go to the beach, and he said okay, but I need to go change first. And within an hour, we were on our way. It reminded me of when he was just a toddler and we would be leave the house to head to work/daycare and I would look at him, call “mental health day” and he and I would head to the ocean. Or the zoo. Or a park.
,
And, as you may or may not know, during the beach trip, I learned some important information, which I believe should be shared. Large rocks at the beach are slippery if there is moss on them. Also, slippery without moss. Cement piers are also slippery, with or without moss. Women of my age should be careful on any of these things, lest they fall, as I did, and almost drown in the ocean/smash your camera/kill your ipod/get covered in blood, moss and sand. I also did some serious damage to my unscraped knee. It is getting better – but I keep thinking back to my fall, lying there like a giant beached pilot whale, flopping around as I tried to get up on the very slippery moss. Ah, a mother’s day to remember. My right leg looks like I was mauled by a demon too. Reminded me of the time I was going to showcase my mad skateboard skills for Andy and immediately had the deck shoot out from underneath me and I fell, slow-mo style, to the ground and smashed my head into the drive way. Days to remember.
/
Well, I do believe the laundry is ready for my attention. Tomorrow, or today, depending what time you are reading this is “hug-it-out-hump-day” and I encourage you to drop your inhibitions, invade the personal space of friends and coworkers and hug the shit out of them. They might scream or tell you that it is unwelcome or unwarranted, but deep inside, they want them. Don’t let the mace or threats of legal action deter you.
,
Good night my friends.
.
btw, the title comes from the fact that I had Yuengling Black and Tan ice cream, and I was blue because it was all gone. sigh.
the “a to “aw screw it already” challenge” aka I really should be doing work
I guess you expected another alphabet challenge entry. As predicted, I got to k, and have decided that for me, having to write with a prompt just is no bueno. I have too much going on in my head at any given moment to be limiting it to a single character to capture it all.
_
Ironically, the next letter I would have written about was the letter L. Which is the type of work I am avoiding right now as I blog instead. Legal. I should be preparing my court questions for my hearing tomorrow. Or completing affidavits. I loaded up the flash drive on Friday to get this work done over the weekend. I was all about about doing work at home. I was….really. That said, because I knew I was going to do paperwork, I made a ham, cleaned my bedroom, organized my yarn. organized my art supplies, read some magazines, drank coffee, made a scrumptious salad with the ham, did laundry, napped, stacked books, watched tv shows I tivo’d, surfed the internet, pinned some shit, and made four hats. Procrastination 1000, Work 0. I will eventually get to the work stuff…probably at 11, and then I’ll get up at 5 am to do some more, because as my fellow baby snatchers know, the night before court is one restless night. No matter how solid your testimony is, no matter how much you have prepared, if you have to be at court, it’s usually because you are about to make one of the parties unhappy. And baby snatchers are disliked enough without having to deliberately make people more miserable. That’s not to say what I do isn’t necessary, and in the interest of keeping kids safe, but it’s never like anyone is all like…”hey, it’s CYS, hey how ya doing? Good to see you, I was just saying, I wish CYS would come by and visit, and uncomplicate my life” “oh we’re going to court? And you are going to testify against me and argue why my kids aren’t safe in my care? Well, come on in and let me bring you some cake!” So anyway, that’s why I will be up all night, tossing and turning – already I’ve got the burning knot in my stomach – and I actually enjoy testifying. I can only imagine what it is like for my co-workers who are uncomfortable with it. At least I now have a computer that has all the necessary keys present on the key board and isn’t possessed, throwing the cursor around wherever it wants and devouring whole manuscripts never to be recovered from the hell files again.
_
Anyway, I was pretty fired up this morning when I realized that if I touched my computer I might be required to work, that I decided to wait a little and see if the passion subsided. As those of you who have delighted in my work for the last couple years know, I love to watch the Sunday morning political talk shows – specifically Meet the Press, and Face the Nation. If you have read this blog long enough, you will also know that I am a liberal of the worst kind…an uber bleeding heart socialist who believes that the wealth should shared in this country, guns are unnecessary, death penalty is inhumane, people come in all shades, sizes, languages, belief systems, gender identities (or not) and love who they love, kum-bi-yah (fill in the rest of the typical derogatory references to my political ideology here). I am also able to see past “belief systems” and see the person, which is why, despite my super left leanings, I also have a number of conservative friends who love me and I love as well. OH SHIT, I forgot to say I’m also a feminist with minor in women’s studies and a thesis on Feminism in the Colonial Period, which also makes me an intellectual elitist. For those of you still reading after this disclosure, I should also add I am fat and poor in material wealth, and also non-christian. Whew.
_
So back to Meet the Press. The recording artist,Will.i.am, was on Meet The Press today. He’s a big supporter of the power of education to change lives. He has his own foundation. Of course all the political shows were heavy with people of color due to that nut job Sterling, but Will.i.am was not playing into it. He asked the politicians on Meet the Press, why does our country not care about making our children the smartest in the world and emphasizing things like project based learning. Then the politicos would open their mouths, and based on their political leanings, would blame the lack of funding for education by the Right or the stomping on State’s Rights by the Left. Of course, Obamacare is also to blame. And the Christian Coalition.
_
Now, I suppose you’ve dozed off by now, but I will continue writing. Because here’s what I found fascinating. Will.i.am’s only question was why are we doing it, not who is to blame, and if we really want to foster American’s exceptionalism, why is it that we don’t capitalize on American creativity, and make it easier for our own citizens to get solid educations and hands on learning? He asked if we all believe in the same thing, then why don’t we do something to make it happen? And that’s when the light shone bright on how screwed up our nation is and why we border on the edge of the decline of Western Civilization. No one walks their talk. I find it hard to believe that every Republican politician believes in his or her heart that abortion is evil, we should let poor people starve, and that God should be forced into our education system. Nor do I believe that every Democrat believes that guns are the root of all evil, we should never say the word God in public and that socialism is the only answer. Yet, once we elect a “democrat” or a “republican” – they have to toe the party line and object to anything the other party asks for. No more acting for the good of the electorate. Make sure you don’t act outside your limitations. Don’t live your beliefs, adopt the beliefs of your party. And of course, it once again made me lose hope that anything will ever change, as the questions continued and each politician in turn, didn’t answer the question, but said why the other political party was foiling all of their ideas. And so another day, week, month, passes in America, and teachers are forced to teach kids to take tests, and try to squeeze actual learning and creativity in and around the indoctrination. Sigh. I did however, enjoy the jokes from the White House Correspondents Dinner, and yes, I am a science and political nerd. Add that to the list.
_
I have so many more things that have been brewing in my brain to write about, and were stymied by following rules. Not that it wasn’t a good idea to start with, and I learned some new words, but 26 letters, that’s a lot for one month. While I have your attention however, or if you just skipped to the last paragraph to pretend like you read this, I encourage you to go to iTunes and download Ryan Young’s Anxious and Angry podcast. In episode 4, he interviews P22, the California mountain lion with mange from eating poisoned rats. I wish I would have emailed a question, to find out why they call him P22, and not ML22. Seriously though, its a great podcast, with very interesting discussions it’s swell being able to listen to Ryan talk with his guests and find that their lives are not entirely different from our own. It’s also quite effective in calming you down when you want to explode with rage at coworkers. Not that I ever would, but sometimes I am seething on the inside, and I wonder if they can hear my thoughts. Or if sometimes my thoughts are actually coming out of my mouth in a mumbly sort of way. So go download it. You can do it here. You should probably buy something on the website too. I mean, he went after a mountain lion with mange to try and reunite it with its family. That should make you buy a shirt. And be careful with the box, because there may be a note inside that you might almost recycle because when you tore the box open to get your shirt and flexi out, you weren’t paying attention. (Thanks for the note Ryan! – I will let you know if the flexi did its job in July – Harsh Realms is one of my favorite songs from Heart Burns btw) And there’s a link to the Anxious and Angry website on the right sidebar too. Just in case you forget to go here.
_
Time to get my life together for work tomorrow…here’s a picture of the flexi and the awesome note I almost missed – I would have take a picture of the shirt too, but it’s currently in the spin part of the wash cycle…
_
Oh, and before I forget, I believe the birds nesting outside my window must be eagles – they came swooping and screeching down this morning…definitely not sparrows.
The almost lost note and the healing flexi disc
two of the 4 hats I made – these went to a baby shower.
peckalicious 