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Posts tagged “positive

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.

happy-cancer1

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.


100 Reasons to Be… (Fill in the Blank)

I needed a list to remind me. It’s way too easy to get sucked in to the black hole of despair.

  1. Andy
  2. Friends
  3. Family
  4. Spring
  5. Fresh Air
  6. Long Fast Drives
  7. Roads with lots of curves and air
  8. Fast Cars
  9. Corgis
  10. Music
  11. Cheese
  12. Blankets
  13. Netflix
  14. Cemeteries
  15. Sunsets
  16. Sunrises
  17. Birds singing
  18. Coloring Books
  19. Pizza
  20. Ice Cream
  21. Badgers
  22. Llamas
  23. Babies
  24. Komodo Dragons
  25. Laughter
  26. Tears
  27. Warm Showers
  28. Swimming Pools
  29. Naps
  30. Flowers
  31. Vikings
  32. Good Movies
  33. Rainy Saturdays
  34. Christmas
  35. Eyebrow Waxing
  36. Dreams
  37. Leggings
  38. Memory Foam Pillow
  39. Hugs
  40. Sleep
  41. Oceans
  42. Swimming
  43. Meatloaf
  44. Cookies
  45. Warm Breezes
  46. Feeling Healthy
  47. Puppies
  48. Thunderstorms
  49. Rain
  50. Rainbows
  51. Giggling
  52. Bad morbid jokes
  53. Laughing with Andy
  54. Cliffs
  55. Shooting stars
  56. Memories
  57. Sandals
  58. Rolling down hills
  59. Fainting goats
  60. Painting
  61. Writing
  62. Dancing
  63. Bubbles
  64. Tattoos
  65. Pedicures
  66. Reading stories
  67. Reading
  68. Poetry
  69. Horror Movies
  70. Chocolate
  71. Chocolate Milk
  72. Journaling
  73. Splashing in puddles
  74. Letters
  75. Old pictures
  76. Being alone
  77. Learning
  78. Halloween
  79. Barley sugar pops
  80. Sweet corn
  81. Peaches
  82. Cherries
  83. Whoopie pies
  84. Ginger beer
  85. Vodka
  86. Herbal medication
  87. Lavender
  88. Kites
  89. Hoodies
  90. Road trips
  91. California
  92. Puppets
  93. Breakfast
  94. Cake
  95. White chocolate peanut butter
  96. Stars
  97. Sleeping with the windows open
  98. Chanting
  99. Tea

100. Heartbeats

Well there it is. I’m not sure what it is a list of other than good things. I can get through today. And I am willing to give tomorrow a shot too.


Sunday, Lazy Sunday

It started out like a good idea. I wanted to post a positive, inspirational quote in the FB group of quotes I started. So I googled. I’ve been struggling with the idea that this cancer came back to teach me a lesson – and what that lesson could be, so I thought, hey, why not a quote about dealing with the lessons taught by difficulties. Had I known that I would have to sift through a bazillion quotes about how I should turn to god in all this, I would have just written my own. As I’ve said before, I am all about people believing in whatever gives them comfort in their heart. Yet, I still get frustrated as hell by the idea that for me to get well, I have to have faith in a god. I don’t. That doesn’t mean I don’t want people to pray for me if that’s what they believe in, because positive energy is good energy in whatever form it takes, but please don’t tell me to put my trust in something I don’t believe in.

That said, the other day when I was thinking about dying, which I do a lot these days, since it’s not something that I can just put aside, I thought for a minute that I would get to see my beloved friend Joey again when I am dead. Then I though, oh shit, I will also have to see my mom. That’s not gonna go well. Ick, and a bunch of ex-boyfriends. Then I remember that we are all energy and no one is really gone anyway, their just a different type of energy, so the “dead” are always with us, just not as we remember them. Then the snowball started – all death related questions, so I thought I’d share a few for you to waste a few hours pondering:

Catholics are taught you are going to purgatory when you die, then you have to atone for all of your sins until you get to go to heaven or hell on judgment day. Also, the unbaptized and sinless get to go to limbo to hang out until judgment day too. So, if that is true, why do we pretend that when someone dies, we have an angel watching over us? Isn’t that like a lie? And where in the bible does it say that you get turned into an angel anyway? I thought the bible was pretty clear that angels are angels and humans are humans and never shall the two interbreed, or HELL. Not that I am worried about this for my own self, but I just wonder about it.

Another catholic concern: If on judgment day you get restored to your perfect human body, if you are going to heaven, which human body is it? Because I would like the one I had at 19. I was really happy with that one. I don’t want this year’s version. And, if you get the body you want at a certain age, and you are trying to reconnect with someone in the afterlife who never knew you at that age, how will they know you, and what if they choose an age when you didn’t know them, then how will you ever find each other and what if one of you is 19 and the other person’s perfect body was at 72, would you still be friends? Think about that. And if you get to pick the age of the body in the afterlife, why even bury dead bodies, because pretty likely you don’t want the one you died in. Unless you were 19. And if you are going to hell, wouldn’t you just get to keep the crappiest form of your body there was?

And why don’t we put wooden crosses at hospitals everywhere the same way we put wooden crosses at crash sites? I mean people die there every day. And at home. I just don’t get it.

Now that I’ve got you thinking, I’ll move on.

I’m doing okay. It’s almost 3 weeks of the tamoxifen. It’s not bad, except for the pimples, nausea, and hot flashes. And now, weight gain, or at least bloating. As if I didn’t have enough weight already. I am trying to figure out if I am dealing with the diagnosis okay or if I am depressed. I’m having pain again, which I manage the best I can depending if I am at home or at work. I am trying to stay off the opiates as long as I can. I feel like I am in limbo now until August, and wish I had a personal CT scanner so I could follow the progress of the ol’ pufferfish myself. I know it’s gotten bigger, because I can feel the changes in my body, and how it impacts my stomach and intestines. I just want the other stuff to disappear, and I wonder if it keeps growing, will they be able to drain fluid from it like before, or am I just going to have to suffer from it? I don’t like suffering. I don’t do well, even though I have a particularly high tolerance for pain. So I just need to know what’s next.

I am not sad. I’m just lacking motivation. There’s a lot of things that go through your head when you have a very uncertain future. A few weeks ago, I was reading an article about being less materialistic. It said before you buy something that you want, ask yourself will anyone want that when you are dead. Amazingly, it really limits the amount of useless shit you buy. Like before I buy another ball of yarn, I say what is Andy going to have to do with the unused crates of yarn you already have, for all the projects you were going to make and haven’t? Then I don’t buy it. It’s morbid and useful all at the same time. So if there’s something of mine you want, better call dibs now, because who knows what will become of it later.

It’s not that I don’t think there’s hope. Because I do. I just have lived my life with preparing for the worst and being pleasantly surprised when the worst doesn’t happen. And if it does, then I was prepared for it I just don’t want to be a fucking Pollyanna thinking that nothing bad will happen, because ignorance is not bliss. I still envision this annoying beast inside of me shrinking and disappearing, I drink the tumor tea, and chant healing sounds. I just don’t want to think that I can go on living like I have all the time in the world. I don’t and none of us do.

I went back and forth on the idea of a bucket list. I don’t like that cliché, but I made a list anyway – it’s pretty short, because I realized I did a lot of the things I wanted to, and the rest, well, either they don’t really matter in the grand scheme of things, or I put them on the list. Mostly, I just want to spend time with people laughing, (which is why I spent the entire weekend alone in the house, medicating) and just hanging out. There are really only three significant things, in addition to my 1000 books read plan, flying in a fighter jet, and do a couple barrel rolls, and maybe a loop, go to Ireland (with a side trip to Stonehenge) and get a van and drive cross country, hitting up all my friends in different states as I make my way back to the west coast. Oh and get a passport. I still haven’t actually gotten around to that. I do have other plans as well, but they aren’t “bucket list” per se, just stuff I am not going to put off doing any longer.

Anyway, this was kind of random. Maybe because I had a lot of pain this morning and I treated it. I also thought it was Father’s Day today, and called my dad to wish him greetings, only to have him inform me it was next week. Andy and I are going to see Against Me! next Saturday in Lancaster, and hopefully my shark sister and her husband will join us, and we can finally get Himalayan food before the show. As for now, I suppose I need to go through my washed clothes in the dryer so I have work clothes for this next full week of work ahead of me. For the record, last week I worked on two case dictations – 41 pages of typing and over 50,000 words total. And only 7ish cases left to go. So be well my friends, enjoy your Sunday, and hope that the next time I blog, I make sense. Be well.

Oh, and you should read this article on impermanence. Here ya go…

http://www.tricycle.com/blog/accepting-unacceptable

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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.panda


 My Days in Poppyland…

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So, I’m trying to wean off of the morphine. I had my appointment with Dr. K. My treatment plan is this: suffer. No, really, it’s manage the pain for now, try to lose 30lbs or the weight of a medium size dog, and then try some laparoscopic surgery in the New Year. Not exactly what I wanted to hear as my doctor was stabbing me in the side saying “yep, your cyst is back and no, I won’t cut you open.” Apparently, the pufferfish is not the toxic life threatening kind of blowfish. It’s just a pest. An inconvenience. A bother. And I’m stuck with it at least a while longer. Because of where it is, and my “fluffiness”, the Dr. would like to see me drop some “fluff” to be in a better place for the procedure. He has said if he goes in and it would be more hazardous to remove it, than it would to leave it be, it’s gonna stay. If he can’t get it with a laser, I’m stuck with it unless something more dangerous grows alongside it or I am impregnated as part of an alien experiment. It’s like a baby I’ll never deliver. Again, another example of me wishing for something and getting it, but only in the universe’s twisted system of fulfilling my dreams.

So my days are now categorized into “manageable” and “unmanageable” – the pain is ever present, but there are days when it is tolerable, and days, like this morning, where it is brutally cruel and tortuous. I waited too long to take a pill, and I was rewarded with two hours of writhing around on the bed bellowing like an elephant seal and looking like a beached beluga whale. And to make is stop, or rather, dull it, I had to double up on the opiates and send myself into a coma for an hour until it was time to go to work. Don’t worry, I am smart enough to not drive on coma mornings. And every time this happens, I make a silent wish that medical marijuana will someday be the law in PA. Because I believe that much of my pain would be squelched by a cannabis brownie.

This will not deter me from the Wine and Whine OTR trip this weekend in which we shall descend on local wineries like thirsty locusts and suck up grape nectar until we tumble back onto the bus. I’ve never done one of these wine tasting trips, but I am looking forward to it. Although I believe there’s some sort of cautionary bit on my prescriptions about alcohol intensifying the effects. Also long as it’s not intensifying the pain, I should be OK.

I apologize for my failure in the witty blogging that you’ve grown accustomed to, but the narcotics dull my shine. I hate not being myself, and I hate being in pain and there’s no happy medium. But I’ve committed to myself to write my way through this, so maybe one other person who is struggling with the magnificent residual gift of the c-monster doesn’t feel insane. They give you all these pamphlets about what treatment is like and what the effects of chemo are, etc, etc. And they show all these smiling “survivors” on TV, all bright and beautiful – but what you don’t hear about is all the goodies that the disease and the treatment leave behind. I’m still having to randomly smell phantom odors (all of which are unpleasant), I’m tired a lot, my hair still tries to be curly, and then there’s this fucking stupid cyst. But there’s no evidence of any cancer, so for that I’m grateful

So since I took my happy little blue pill an hour ago, I’m nodding off as I type, so this signals I should try to get some rest while I’m in the honeymoon stage of numbness. But before I go, I should announce that in my efforts to defluffitize, I’ll be trying to eat in a healthy manner. That means no more “single serving” pints of Ben and Jerry’s and stuffing pizza in my mouth like I am the beaked creature in Beetlejuice whose head practically opened in half. I’ve asked my coworkers to punch me or knock unhealthy food from my hands at the office, so if you see me in a public space dining on sugar bombs, please feel free to do the same. I am somewhat upset that I am trying to do this during the eating season when orange kitkats, turkey cranberry paninis, and warm chocolate cookies are taunting me like tiny demon sprites around my head. And now it’s time to watch American Horror Story, because the morphine and percocet don’t give me enough weird scary dreams on their own.

Peace my pumpkins, be well.


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.

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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.

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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.

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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.

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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.

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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.

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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.

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Sweet dreams my pretties.


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

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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.

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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.

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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.

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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.)

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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.

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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.

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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.

puking_rainbows_for_real_by_pacifictoast-d2xv9byHopefully 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).

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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!

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