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Profound Insights

And On Mondays, We Get Probed.

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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.


Deep Thoughts (No Pictures)

I am sitting here waiting for my brownie to kick in  – these are some delayed reaction brownies – so I can go to sleep. I can barely get out of bed the last few days, and I just want to sleep sleep sleep, but when I lie down I toss and turn and stress. So I ate a brownie. I ate two the other night, and probably should have only eaten 1/2, because I was all kinds of mushy and floaty. But at least now I know their potency.

Anyway, I just got an email reminding me to update my CV on higheredjobs.com. I almost went to to it, when I realized why do I need to do that? I am not going to be interviewing for new jobs anytime soon. I can barely get my ass into work for 2 hours a day without needing a full day to recover.

The other things that have been on my mind are all time related – can I really expect to go to Ireland in April/May? Or should I get planning to go now? I’m not dying hooked up to tubes in a hospital, so when do I think about quitting my job, cashing in my retirement and starting my drive to the west coast road trip?  What’s going on inside? Am I going to learn tomorrow that I better do what I need to do quickly? I am so fucking scared of having tubes and shit stuck in me and limiting what I can do. And I really started thinking about the dying moments the other day…what’s that going to be like? Will I know what is happening? Will I freak out and plead for more time? I don’t even know if I want anyone there when the time comes…this is what cancer does…it steals your strength, your health, and then fills your mind with what ifs, and lists of what you need to do.

Speaking of which, does anyone have a burn barrel I can come use to get rid of some things? I promise, there are no human remains.

 


‘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…

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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.

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The War on Christmas Road Trip (with PICTURES!)

Wow, I realized that this last month I have sucked at actually completing a blog post and then posting it. Again, I’ve been writing them, or perhaps I should say, I start writing them, get in the flow, getting my words on, and then I start to feel nauseated and have to get the medical equipment and address it. Then, as those of you who are familiar with the medication are well aware, one of three things happen:

  1. I continue writing but by the time I get to the end, I’ve rambled on for seven pages and feel that I need to split it up into sensible chunks before I can post it. (rare)
  2. I say, gee, I just need a little nap now, and I’ll finish it in in a hour. And then two days later, I have to recover said document and save it because I never titled it, and then the computer froze. It’s still not done. (happens pretty regularly)
  3. I see something shiny or flashing on the internet, or decide I need to make some Christmas doo-dad, and then fall down a fuzzy rabbit hole in which I learn that baby reindeer start growing antlers almost immediately after being born. Oh wait, I haven’t watched https://reindeercam.com/ today. (and off I go to watch reindeer – happens all the time) (I just went to the interwebs to get the URL for reindeer cam and found out I have been eating pancakes all wrong, you should make a hole in the middle of the stack and pour syrup in there. Wow. Yes, I’m medicated)

And as you can see, the likelihood that I ever finish what I was doing becomes very small, and I promise to do it tomorrow, just like I do with letters, bills, unanswered text messages and laundry. But not today my faithful readers, I will complete this. I have sworn not to do anymore origami Christmas wreaths for my Christmas card until I write this entry and post it with the photo collages I spent hours creating this morning. (do you want an origami Christmas wreath ornament, or a Christmas card? Because I am so on that this year – send me your address). That is not to say that I have not completed some things. The house is well decorated for Christmas, although not quite finished. Fear not, the pictures of the house where Christmas threw up will eventually make their way to the blog and social media. As will the entry about what happened at the Dr. on Monday in all its gross and graphic detail, but I am here with a purpose today. So with no further delay.

Well the plan was to leave at 3am. Which was actually 5am. I cannot sleep in the car no matter how medicated I am, and no matter how tired. So Andy drove first for a while, and then I drove through the visual wasteland of Ohio and the flatness of Indiana. Andy took over and drove the rest of the way when we got to Illinois. I let him drive in cities because he thinks he’s better at it than me. It’s one of those battles I don’t care to fight. We got to the hotel earlier for check in because I forgot the time change, so we checked in at 2ish, and I finally got to nap. We ordered delicious Thai food, watched criminal minds and were asleep by 9. The hotel was very very nice, amazing beds, and pillows and quiet and right next to Lake Michigan. I would be amiss in not noting that while we were driving, I saw two hawks. I may or may not have talked about hawks and what they mean to me, but I was not pleased to see them because they always are a harbinger of change for me, and it’s never initially good. Saw a hawk, got laid off, saw a hawk, find out my cancer is back, see a hawk, overdraw my account. There’s a pattern. I know change is always ultimately good, but I still hate to see them, and this time, one of those motherfuckers flew straight at the windshield like that damn pigeon did on our 2013 Mother’s Day road trip to the beach. Except it didn’t actually hit the windshield. Anyway, I was on alert. I know that is sounds superstitious, and I typically don’t get all wound up by those things, but hawks freak me out. I can’t really explain it.

Day two started with Andy deciding to let me know he was going out to wander the city at 5am. Have fun honey. Bring me breakfast. I’m still sleeping. Off he went, and I slept and slept and then he came back by nine-ish with some lukewarm cocoa. And no breakfast, so I ate leftover curry. Then I decided to go for a swim in the hotel pool. It was a lap pool with no children in it so it was heavenly. I actually swam at least ten laps and felt amazing. I knew I would pay for this later, but hell, that’s what the medication is for. Then I even enjoyed the sauna. Since we were planning to go to the aquarium, I woke the sleeping Andy and we headed to the see the fishes. Curiously, Chicago’s aquarium and museum have odd admission prices. Like the GA admission to the aquarium is only $8, but if you want to see the sharks, and the stingrays, and the penguins and something else, it goes up to $30.95. Having seen sharks, penguins and rays, we elected to get the $8 tickets, which was the wise choice, because the penguin exhibit was under construction, the rays were closed for the winter and well, I’ve see sharks. It was a cute little aquarium without all the bells and whistles of the special features and had many penny-flattening machines. The Amazon exhibit was exceptionally humid and it started to make me feel a little sick so I was sitting down a lot during a visit. I was only able to take pictures in the very well lit places so I think I took three. Then I ordered Andy about to take more since his phone camera doesn’t suck the way mine does. We saw monkey and frogs and birds, as well as fish. I must say my favorite were all the big fish that had funny fish faces, the lumpfish, and the giant snapping turtle. And I gave every pufferfish I saw the finger and told them I hate their fucking presence everywhere.

We headed back to the hotel after buying expensive souvenirs, magnets and the photo package of the photo they take of you when you enter the aquarium. It was time to get ready for The Lawrence Arms First Annual War on Christmas show, and I needed a nap and a shower. This is where the not so good changes from the hawk comes in, and I am about to get graphic, so if that bugs you, STOP HERE. You can resume at the word RESUME. Anyway, I had to pee before I took my shower, and as you may or may not know, the pufferfish that lives inside me has been growing back to it’s original size after the last draining. It really started to cause issues the last week before leaving and all I wanted to do was have my trip to Chicago and I swore I would call the Dr. when we got back. Especially since I did not want to end up in the ER with tubes. Wednesday night, I was having some issues with being able to pee, and was worried, but that worry was gone by Thursday evening. Not only could I pee as I can when the cyst was drained, there were waves of fluid leaving my body. I was like, hell I didn’t drink that much water. When it finally stopped, I went to flush and realized is was a weird bloody mucus fluid, just like they drain out of my cyst, but then (GETTING EVEN GROSSER HERE) I also have had the gift of hemorrhoids since I was pregnant with Andy, and they occasionally burst, so I thought maybe that was it too. Whatever, I had a show to go to. I wasn’t saying anything to Andy, and was just gonna hope it was a fluke. I padded up just in case, and off we went. Whatever it was, could wait until after the show, unless I began hemorrhaging, and then we’d have to reassess the rate of blood loss to see if it could wait until after Off With Their Heads’ set. You may RESUME HERE.

So we got in the car and headed to the Double Door. We found it no problem. We should have taken Uber or public transportation, but then we FINALLY found a parking space just an ½ block away. Of course we started walking in the wrong direction and then realized that the one minute walk had turned into a ten minute walk, and I turned to my trusty GPS to get there on foot. The will call line was literally down the block. And we had to wait. I was beginning to get nervous because it was close to the time of OWTH set and I was like, we did not just drive 10 hours to miss this. We got in at the nick of time, just before they took the stage. The first person I saw was Tommy at the OWTH merch table and after an exchange of hugs and such, he told me to stand behind the table for the set, because he was going down front, and I would have a great view from where I was. And I did. And I did the best ever job of selling nothing for OWTH for their entire set. Then Tommy came back and took over, and introduced me to his friend Sarah who then because the merch girl while Tommy socialized. And I must say she did an excellent job, particularly with the complicated notebook sales recording system.

OWTH were great, it was very festive set, and as always, amazing. During the break, Ranae suddenly appeared and we too exchanged hugs and stuff and snuck away downstairs to talk during part of the Lawrence Arms set. We decided that Brendan Kelly looks like a golden retriever with his bandana around his neck and you just want to scratch him under his chin. I drank cranberry juice straight, as I am still protecting the kidney from any more tubes, and asked Ranae what hospital I should go to if I needed one. The rest of the time, I pretended to be perfectly fine. Ranae and I had a great time chatting, and hanging out, and of course I got to see Ryan, Nice Jon, Robbie and Ryan Fisher too and get hugs. I can’t believe I used to not be a hugger. They were going to go across the street after the show, and as much as I wanted to go too, I was just wiped out and more than a little nervous about the whole blood thing. And my body has a way of just shutting down when it has had enough. I get cramps in my legs, a pain in my lower abdomen, and cramps in my sides. It’s like it just says stop. And it was saying stop. So I had Andy take me home – I told him to go back and hang if he wanted to, but he worries and stayed with me. I had a medicinal mixture when I went back to the hotel and passed into a coma. At least I didn’t see anymore blood.

No more blood in the morning. I went for another swim/sauna deal, while Andy when and got breakfast – yummo. Challah bread french toast and home-fries with ham, swiss, and mushrooms. He ate many plates of eggs and potatoes with chorizo and cheese. I then took a nap and we watched Christmas specials like Rudolph’s Shiny New Year and The Year Without A Santa Claus before we got ready to go to the zoo. Chicago’s Lincoln Park Zoo is free, and has Zoo Lights. Again, my camera pictures suck so what you’ll see here is my shitty pictures. It was beautiful. And and awesome zoo with no major hills. It has tigers. And lions. They gave out cool 3d glasses that turned the lights into little elves’ heads. I wished I was medicated. Because not only were the glasses cool, so were the lights on their own. We had a great walk and the lights were amazing. Even Santa was there. Again, an ridiculous amount of money was spent of souvenirs. And we headed to the Big Bus Tour Holiday Express which is a nighttime tour of Chicago’s Christmas-y attractions. We started at the Chicago Hershey’s Chocolate World, which is not even close to the well-loved Hershey attraction. We waited and waited for the bus, as it was really late, and Andy was being a cranky baby because he ate way too much food and had a belly ache and was being a buzz-kill Finally the bus came and the bus driver was like, no you have to go get a paper ticket before you can get on, and I was like for real? We just waited for you for 40 minutes (they are supposed to be on a 10-20 minute cycle) and now you want me to walk to another stop and wait for you there? Do you see this miserable 20 something with me? Do you think I want to tell him he has to walk somewhere? So she said stay on the bus, and I’ll take you to the scanner stop. Yay! A small win. And I’m still not bleeding. Maybe things are fine.

We ride up in the top part of the bus, and enjoy the lights and what not, and decide to check out the Christkindlmart which had some beautiful things, but you could not get close to them because PEOPLE. It was a mob scene. I am not a big fan of people or crowds to begin with and this place was insane. Any food stand had a line 100 people deep. You could barely walk. Andy wanted hot apple cider and got in line for it. I managed to walk the entire market, even pausing to look at a few things, and by the time I got back to the hot apple cider stand, Andy was just being served. We took a sip or two of cider and headed back to catch the bus. We rode it to the rest of the stops, and then returned to Chocolate World, got our free hot chocolates, bought some cookies and headed back to the hotel. Again, my body was letting me know it had enough. And now the blood was back. I ate a cookie, drank a ton of water and went to bed. I wasn’t bleeding enough for it to be an emergency, but enough to be annoying.

On Saturday, I tried to get together with Sarah and Christy for breakfast or something but Sarah had already left to the airport and I wasn’t feeling very good, so we just packed up our shit (or most of it, forgetting my toothpaste and brush, all the leftover food, beers, and most importantly, the medication in the safe, at the hotel) We were going to go to the museum. Which like the aquarium has a GA price and then all the really cool exhibits are extra. First we were going to try to hit the Christkindlmart again, but when we drove by it was already a mob scene and NOT EVEN OPEN yet. Scratch that. Onto the museum. By this time, we decided we would just get out and take pictures of the cool Chinese zodiac sculptures and then get a Chicago hot dog, take a picture of outside of the museum and head home because I don’t feel my best, and well, blood. And that’s what we did. We also planned to stop to see some of Andy’s fellow Milts, Christina and Eric and their little guy Zane outside of Indianapolis. This is when I discovered that Jack in the Box exists in Indiana. Next to seeing OWTH and hanging out with Ranae, this was the best part of the trip. I was able to get and devour the unidentifiable flavors of the Jack in the Box tacos and egg rolls, bringing back California memories of looking for some place to get food after being out most of the night and heading home. Still tastes the same.

We stopped at Christina’s and were going to stay a couple of hours, but that’s when I really started to bleed heavily, so since I didn’t have enough supplies and I was afraid to sit down anywhere, we had to leave early. Andy is such a trooper and ran in Target to get pads for me; I am thinking maybe we should go to an ER, but really, I just want to get home, and if we have to drive straight through to Hershey to the ER, then that is what we’ll do. I tell Andy we need to stop at the first rest area because I need to change clothes and when we do, it’s virtually impossible to discreetly make it to the restroom to change when you’re drenched in blood. But I do, and things stay heavy for a while, and then slowly taper off. Andy and I switched driving around 11 and I drove through Ohio and into PA. When we got to PA, I started getting really tired, and would stop every 50 miles because I couldn’t keep my eyes open, but I also wanted to get home ASAP so I can decided what I need to do next. As I mentioned, I can’t sleep in the car, no matter how tired I am, so every time I stop, I end up just sitting there with my eyes wide open. Finally I woke up and Andy and had him drive the final 150 miles home. We got home around five, and the bleeding seemed to have stopped. I slept the sleep of the dead for at least 5 hours.

I’m gonna end this here, because it’s pretty long, and I can pick up with the call to the hospital when I tell the tale of the Dr. visit. No matter how much blood I lost, it was entirely worth it to have had this adventure. I can’t even put into words what it means to be able to do this stuff with Andy and make memories of good times for us. It was a fabulous time, and I would do it all over, even with the bloodshed, again because it was so fun. With that said, and it being Christmas time, do fun stuff with the people you love – buying shit doesn’t mean nearly as much as having adventures. Andy and I never really had “vacations” when he was growing up, and I regret that now – not that we didn’t go on day trips and stuff – but I wish we had taken more vacations, had more adventures. So take my advice and have as many adventures as you can. And now that I am done this entry, I can resume writing a whimsical holiday poem as is my tradition. Enjoy your evenings, lovelies, and don’t forget I still didn’t get a real puppy yet, or a miniature pony, so please let Santa know. I do have my other puppy sitting right here though, but he doesn’t like to go on walks. And I am always available for cookie tasting. Now, be off with ye…

And excuse grammar and such errors. I really don’t feel well today and I am staying medicated, so I can’t properly proof-read today.

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When The Day Is Just Right

When Andy was 2, I made thanksgiving dinner for just the two of us. I spread a sheet out on the floor in our dining room, I fixed our plates, and cut up his food. We sat together on that sheet and had a thanksgiving picnic which rapidly turned into a food fight. We laughed and laughed squishing cranberry sauce on each other’s head and spitting peas. Somewhere I have pictures of Andy after the food fight – he’s wearing a striped shirt and denim pants. I can still picture every moment of that dinner today.

I cooked Thanksgiving dinner today. The last time I did was in 2011. Since then, I’ve been too sick or depressed or both to do it. I just didn’t have the strength to put the whole show together. I mean, I’ve made a turkey or reasonable facsimile once or twice, and we’ve eaten with other people or gone out. But I did not put out the full spread for four years. So today, we had turkey, ham, kielbasa, homemade handwhipped instant mashed potatoes, gravy, sweet potatoes, cranberry sauce, green beans sauteed with bacon, biscuits, stuffing, pineapple-dijon sauce and for dessert – lemon pumpkin crunch cake with real whipped cream. I ate a little, because today is back on the Tamoxifen. It was even almost all ready at one time. It was delicious, no beyond delicious, scrumptious. I’m still picking at what I wasn’t able to eat every now and then because I don’t want to waste it.

That’s not what I will remember most about today – I’ll remember how excited Andy was when he saw how much I really did cook today. Things he’s loved his whole life. And the sheer joy on his face when he was eating, how he went back for seconds, then sat with me watching tv and belching. We haven’t had a lot of those moments in the last few years. I wanted to make it a thanksgiving he would remember – we haven’t even so much as snarled at each other all day – it’s just been a good, happy, satisfying day. We’re still lounging around in pajamas, napping on and off. It’s a good day. A just right day. Every day should be a just right day. But I am grateful for just having this one. More than you can know.

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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:

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.

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Free At Last!! (At Least From The Horrors of the Tubes, Anyway)

I actually got ready early this morning, because we had several things to do be we left for my appointment at Hershey – which included going to vote with Andy and having a discussion about voter suppression, since once again, illegally, the polling place had a sign that said new voters had to show ID. I don’t know whether it’s blatant disregard that that no law was ever passed, or just ignorance developed from watching too much Fox News. Whatever. Not to mention that the polling place door is always surrounded by people campaigning for local candidates, making it somewhat intimidating to enter without being assaulted. But enter we did, and refused all the little cards the lurkers tried to force upon us to help up select our candidates. Really, if you don’t know who you are voting for and why when you get to the polls, you shouldn’t be voting at all, because you are clearly uninformed. I hate the way small town voting always seems shady, but our votes were cast and we received our stickers, which is my favorite part of voting.

After voting, we then had to hit the pharmacy because I was not going anywhere near that hospital today without being armed with a full prescription of pain meds. I wish I had had something for anxiety, because while the pain of the last tube procedure was just a memory for my brain, my body was fully remembering the trauma of the last visit, and on high stress alert. Not to mention that I couldn’t eat or drink anything for several hours before this stabbing, and I was nauseated by the Tamoxifen and shaky from not eating or drinking. My brain kept trying to deny that this time would be as painful as last, but my body was having none of that. Being sedated last time when I was leaving the Vascular Radiology department, I could only remember it was down the hall from Interventional Radiology, and wandered around lost in the bowels of the hospital trying to find it. I did find my friend Joanne, who works at PSHMC, and we then wandered together until I found it. I checked in and went to the waiting cell. As is typical at PSHMC, Fox News was on. I was doing okay until they started interviewing Donald Trump, and he began spewing outright lies, and no one even challenged him. At that point, I went and stood in the hall, because Tamoxifen raises my blood pressure and that asshole was making it worse. Not to mention all the crazy supporters in the waiting area who find him appealing as a candidate. And lest I forget, the man who spent his time reading his magazines aloud, then also audibly commenting on the articles he just read. I could feel my blood pressure soaring.

Finally I was beckoned to the dungeon, er, staging area. IV insertion did not go smoothly, and my very sweet nurse called for a vein whisperer after her first two attempts did not go as planned. My left hand is now going to be a large bruise. The second nurse got the IV started in my right hand after a few harrowing minutes when it looked like that vein was going to blow too. Settled onto my bed, I actually had a pillow this time instead of a fold-up blanket like last time. I tried to lie down, but I wanted to puke, so I asked the nurse to help me sit up so I wasn’t choking. She offered me Zofran, I wanted my herbal medication, and declined, and said I would deal with it when I got home. She said, oh do you drink ginger ale and I giggled and said, yes, but I also smoke marijuana. She nodded her approval. The Dr. then came out and told me that they had discussed my tube at their morning meeting and agreed that if they ran dye through my tube and it made it to my bladder, they would pull that sucker out. I agreed completely – then found out that since that was the plan, there’s be no sedation, no pain meds and no need for the IV so carefully stuck into my hand. However they left it in, and wheeled me into the procedure room, where in 15 minutes, my 13 weeks of torment were over. It was almost painless, but not really. I couldn’t wait to get a drink and some oxy to ward off any impending pain. I was wheeled back to my waiting space and released. Now to find Andy and my mango smoothie.

Andy and I hit the road after finding each other, and headed home. I drank my smoothie and ate my pills and was still cranky because I needed to eat. I wanted wings, but the wing place didn’t have any interesting flavors, so I settled for a jr. bacon cheeseburger, and some nuggets from Wendy’s. After my angry, hungry beast was fed, things were much better. We got home without any serious pain like last time. My little friend Erin was there to great me when I got home, and after a couple minutes of chatting with her, I headed to the tower, more pills, my medicine pipe, some advil and water. Having adequately medicated, I tried to sleep. Then the pain came. I guess I didn’t take my meds at the right time to prevent the last dose from wearing off completely, and just like last time, I couldn’t move my right side for without screeching pain with every movement. It’s since toned down a little, but that’s the main reason I am blogging tonight, because I need to get another dose in before I go to bed, so that I don’t wake up crying. My kidney spasms every now and then like it’s pushing small pieces of glass through it, and that my friends, is horrific. It lasts less than a minute, but it jolts me awake. Hopefully by tomorrow morning it will be tolerable.

The pain however was what got me thinking about blogging tonight was, because I don’t know if this happens for other people, but it does for me, when I am in pain I tend to hum, and then I hear songs in my head that are relevant to my situation. For instance, the song of the evening that is replaying in my head is Off With Their Heads’ Trying to Breathe. It’s my way of self-soothing I suppose. But I seem to have certain soundtracks to my life – like last month, I often heard one of U2’s earlier songs, October, over and over in my head. November is the month of the Jesus and Mary Chain because Joey’s birthday and the day he died are both this month, and the JMC is what reminds me of our friendship. And when the depression hits, I often turn to the Smiths and Elliott Smith to highlight my misery. When I was first diagnosed with cancer and I had to make the 4:30am drive back and forth to Hershey, I listened to OWTH’s In Desolation, to and from, every day…it got me through those six weeks and far beyond. OWTH is still one of my go-to bands for catharsis, and that’s the reason I try to see them as often as I can because there’s a sense of belonging among that crowd that I am not alone in my pain, fear, and frustration. It’s healing and cleansing. In fact, if you were to ask me about specific times in my life, there would be an album or a band that I would identify it with. R.E.M got me through being dumped during my pregnancy. I made mix CDs (and now playlists) of songs for seasons – there were summer songs, and loneliness songs, and dark brooding goth mixes with Black Tape for A Blue Girl. Some people enjoy music – my music gets me through the hard times, helping me put to words what I am feeling inside, and scream it out loud on winding back roads, helping me heal. There’s even driving music, which I have to be careful with because it seems to enhance my leadfoot. Then there were the new bands I discovered and would listen to when I first got to California and had to take the 2.5 bus ride to and from work every day – Husker Du, the Replacements and the Hoodoo Gurus to name a few. And Echo and The Bunnymen’s Songs to Learn and Sing. Andy’s first show was the very first Lollapalooza when I was 8 months pregnant. Most of my friends are clueless about the bands I listen to and love, but without my music, I’d be lost. It’s not just music, it’s my way to cope. Especially while I have been dealing with this C-monster that has me in its clutches. When I got the last prognosis, I spent hours driving and crying and singing my throat raw before I could pull it together to come home. I listen to classical when I need to focus; I listen to weird rhythmic pieces by Gabrielle Roth when I need to stretch, and I had playlists for the gym when I still had the strength to go. There was music for strength training and music for the elipti-hell machine. And there are songs that I will listen to on repeat until every ounce of pain has been expunged. And while I find peace in the bands I discover and love, there’s also music that makes my ears bleed – and gets under my skin like a festering splinter that I can’t wait to be rid of. Like when we went on the dinner cruise in DC, and the music they played on the observation deck made me want to leap into the Potomac or shoot out the speakers, or both – music can indeed make me miserable. Or it can make me laugh, like the song Bunnies by Pansy Division. (Go ahead and download that one) And for those who received them as holiday gifts – there are my impressive holiday songs collection, which have had some gems on them. It’s not just music, it’s part of who I am.

Music was the reason I was willing to put off chemo for two months so I could go to shows and festivals and see the bands I love. And while I made it the shows that mattered most to me, we all know how difficult the kidneys and bladder made following through on a lot of that was. In fact, going to shows made me fight a little harder to stay healthy so I could go. And it gives me a connection with Andy, that we enjoy a lot of the same music gives us something we can do together. In fact, my Christmas present is going to Chicago for the War On Christmas shows in December. Part of my “things I still need to do list” includes seeing bands I’ve always wanted to see live, which is a pretty short list these days, but there are still a few I haven’t seen.

Well now that I spilled all of that out there, it’s time for another round of pills. I’m still having pain, but it’s getting better – I will probably need my dressing changed in the morning – the doctor said that my kidney will seal itself, but there may be some discharge for a few days. I am allowed to swim and take baths again – they said 2 days, but I’ll wait a little longer, like when the hole is actually closed, and I don’t need a bandage on my back. It’s really the tape tugging at my skin that causes the most pain – there are scars around my back where the tape tore away my skin just like it did on my thigh. And it itches. But it’s almost completely over and I am so thrilled that I can’t even stand it. I rolled around on the bed just for fun, because nothing was tugging and pulling at my skin and kidney for the first time in over two months. I could literally feel the stress slide off after I got in the car to come home. I can deal with cancer, and I know at some point these things might have to be a part of my life n the months to come, but they don’t need to be here now. I just want to be able to do things and go places now while I can, without these encumbrances. Not that I minded taking the punk rock stroller to the shows, but I’d much rather be free of the attachments. No, that’s a lie, I did mind taking it, but a girl’s gotta do what a girl’s gotta do.

So now that my pain pills are slowly making their way into my bloodstream, I am ready to head to bed so that I can get up and get things done tomorrow, at least some laundry and maybe making dinner. We’ve been eating a lot of fast food, food other people have so kindly made for us, and frozen food. I haven’t had the energy to cook, but I’m hungry for jerk chicken and mashed potatoes and corn, and I know Andy would be grateful for his mother’s cooking again. The ladies arrive from CA here in Shenandoah on Friday, and Saturday morning we are going to Shady Maple for breakfast (and for the gift shop so I can get a new toy). I am so excited to see them all and spend time with them. And I am very thrilled to see all my other friend at the benefit on Saturday, and to score some of the good food that will be there, especially the stuff Lisa’s making, because that woman can cook. Best breaded chicken ever. My only hope is that my dad doesn’t over do the wine and drag up every less that optimal decision I ever made in my life. Presently, he’s blaming my circumstances on moving to FL with my much older alcoholic and drug addicted boyfriend when I was 17. That’s a long time and a lot of therapy ago. But that’s my dad. It’s still going to be a good time.

Before I forget, I did get my panda suit. It was very hot. I sat on the porch for over an hour waving at cars, but only 4 people total ever waved back. I scared Andy, Eric and two other people walking by. People showed the panda no love. If I saw a giant panda just sitting and waving on a porch, I would have stopped the car for pictures. Then I let Andy borrow the costume for a show he was going to. The panda body no longer exists any more because he was far too tall for it, and it showed. However, panda’s head is just fine, so I’ll just toss on my new security blanket, my OWTH hoodie, and sit on the porch as punk rock panda, and see if that makes a difference. Now it’s time for bed, and more water because we have to keep the kidney in good shape. Sweetest of dreams, I’ll probably be back after everyone returns to the West coast with pictures and stories to tell. Enjoy these last few warm days. And remember to give lots of hugs and tell people you love them every chance you get. You can’t do either enough. And sorry for the rambling, it’s the medication, I swear.


And Then It Was November…

Well happy people, it’s my birthday month. It’s also time for seasonal affective disorderr to rear its ugly head. The time of year when everything dies and I feel the urge to sing along with Morrissey and Elliott Smith. But surprisingly, increasing my antidepressant seems to have stayed the invasion of winter blackness for now. I tried taking my new dose for a few days, and it made my head feel all scrambly, so I decided I will alternate every other day, one old pill and one new pill. What, you say? How dare I disregard my physician’s instructions? I do it all the time – I know my body and brain better than any doctor, especially my brain, and it says I’m doing what I need to. Although it also was nice that my new palliative care doctor agreed with my method of medication administration.

Oh yeah, you want to know how that went, right? Surprisingly well. I really like the Dr. – she reminded me very much of my good friend Jess, with her manor and her tone, and I felt very comfortable. She was also very cool about my morbid sense of humor, and asked all the right questions without being intrusive. She is going to get me hooked up with a counselor who I can vent to on a semi-regular basis who will listen without trying to make me feel better and who will not give me “sad face” or pat my fucking arm. This is very comforting. We talked about end of life planning, what I should look for in terms of my disease taking a downturn, living wills, and what would be “my line in the sand” in terms of when I would say enough with treatment, and again, it’s quality over quantity. Her office will be the one I call for pain meds and if any new symptoms come up, or I want to discuss options for care. I got all the paperwork to make Andy my power of attorney and provide a living will – I hesitated to fill it out at first because I wanted to make sure he was okay with making those decisions. I don’t know who else I could trust with them – I don’t know how many people would honor what I want without question. Andy said he’s fine with it. All I know is that I don’t want to be come mean and miserable and trapped in a hospital bed to die. If I have no control like I did when they forced Dana inside and drilled a hole in my kidney, that’s one thing, but if there are options, I want to be in control of when and how I leave this particular life cycle. My biggest fear is to find myself unable to say “turn those fucking machines off’” and being a human vegetable. Okay, my biggest fear is being buried alive with clowns, but that’s my second fear.

I’m feeling better lately. I had a few days of a being a bit out of it after my flu shot. My joints are achy today, but I don’t know if it’s because of the flu shot or because I was cleaning in my lame, not a lot of energy way. I managed to clean a 4′ x 3′ area today, and do a load of laundry. I am getting better at throwing things away. You can’t even begin to understand what it’s like to have to think about holidays in the context of will I even be around to use this next year? Or things that I was saving for one reason or another, I now look at and say there’s really no reason to hang on to this anymore. It’s liberating and sad at the same time. Don’t get me wrong, I’m not miserable over it – it’s just thoughts and emotions and they are all just temporary. Just like not that long ago I didn’t even want to be awake, and I just kept reminding myself I only needed to get through today, until the blackness receded and I got my ass out of bed and started moving again. All I am hoping now is that: 1. They pull this tube on Tuesday and 2. That when they pull it I don’t end up in bed for 2 or 3 days like the last torture session. The benefit is on Saturday and I still have some straightening up to do, and jello shots to make. The California girls get here Friday, and then the fun starts. We’re going to Shady Maple on Saturday for breakfast before the benefit because those silly Mennonites don’t work on Sundays and they’re closed. Good times. Maybe this time I can get a stuffed black mamba or maybe a vampire deer for my collection. Hmmm, Paige is getting my scary baby collection after I’m dead, I wonder who have’ll dibs on the stuffed animal predator collection. I know Andy doesn’t really want a stuffed komodo dragon or wild african dog.

I try really hard when I am around people who give me sad face not to talk death. The problem is that it’s constantly on my mind. With that said, it’s not like it’s all doom and gloom and I’ve accepted that outcome as final and non-negotiable. I think anything is possible – I think about my stupid pufferfish every day and visualize it growing smaller and smaller and picture it vanishing. I think about how the human body is an amazing self-healing machine and if it’s meant to be, I’ll be around as long as it’s necessary to learn whatever I was supposed to learn in this life. There are no real certainties with this disease. I mean nothing was worse after cyst drainage – things actually improved with the departure of Dana and the impending tube removal. Yet you don’t ever stop thinking about what is happening in your body and trying to figure out was this something that you brought on yourself, or is it just one of life’s lessons. You start trying to figure out why this is happening to you. It’s such a rollercoaster and right now it’s like I am standing in line for my next go round.

Then there are the multitude of questions – am I doing enough? Should I get a third opinion? Maybe I should stop eating bacon and candy (gasp). More fruits. Veggies. Get back on my tea regimen. While I was checking in at the Cancer Institute the other day, there was a sweet old lady behind me who asked me about my OWTH hoodie – as we started talking we both discovered we were patients of Dr. K and both adored him. We started talking about second opinions and how it felt like we’d be cheating on Dr. K if we got one, but that people around us encouraged us too. She has had ovarian cancer for over 5 years – and it was nice to talk to someone who has a very similar stupid disease. We went our separate ways, she off to do blood work, and me, off to my appointment. I have to say I am not as fond of the new offices as I was of the old. Maybe because there are people with all sorts of cancers in the waiting room of the new offices, and some of them are very clearly very sick, and it reminds me of what is to come. I don’t want to be that person. It makes me uncomfortable. It also makes me glad that Dr. J left Hershey before I found out about the recurrence. I am glad he never needed to know that the cancer was back, and he got to leave thinking I was cancer free. Although I wonder if Dr. K ever mentioned it to him, since they were friends.

I know I am just rambling now. I want so badly to go to sleep but I had a bit of a row with Andy earlier and of course it was right before I was to fall asleep. Naturally, I got fired up and sleep wasn’t going to be coming anytime soon. Of course, he’s upstairs snoring, and I am down here trying to get my brain from firing on all cylinders so I too can snooze. I am both excited and stressed about the benefit on Saturday, and then the next week is my birthday. Of course, I want it to be a fun filled day, because I don’t know if there’ll be another one – in my gut I believe there will be, but I don’t want to wait to celebrate until I find out. I know this all sounds sort of sad, but trust me, I really am in mostly a good headspace right now – these are all just thoughts that I am stuck with every day, and they no longer are good or bad, just are. On the good news front though, Ranae’s mom had a pet scan and has no new cancer and can stop chemo – which is fabulous news. When I told Andy, he said, well let’s hope you’re next. Let’s hope. Today is one of those days where I feel I can face anything that is ahead. I appreciate these days because I know the other days when I feel like the floor has dropped out beneath me rip out my soul. If there’s one thing this fucking miserable disease does, it teaches you that there is a very broad spectrum of emotions and states of mind out there, and it will make you feel each and every one of them.

Okay, finally I feel like I can lie back down and curl up to sleep. So far the evil Tamoxifen is not giving me too much trouble with hot flashes. While I still get them, I believe the increased Effexor is keeping them in check. I still play the blanket game every night, and I still wake up damp with sweat every morning, but it’s not so bad during the day. The one thing I really hate about Tamoxifen is that it make my boobs bigger than they are. I really miss my perfect B cup boobs from the time before Andy. I hate slinging these things around, tucking them in to bras and then releasing them like Kraken when I get home and can take the boob harness off. But again, I should watch what I say before they become a source of pain and anxiety.

And now I must depart for my bed. I’ve finally watched all of Season 3 of Hemlock Grove, which just left me anxious for the next season and now I will have to wait for what seems like forever. So now I just watch reruns of last season’s Vikings and hope the new season starts soon. I’m still making pumpkin hats and making some cards tomorrow, and going to finish coffinizing the babies tomorrow. I’ve only got 8 more to go. I forgot how many I really had. Lots of babies. I did notice that one of my babies is missing her rat and another his bloody cleaver. And when I went to take them out of the storage bin, some of them had taken their shoes off. I wonder what was going on in there. I hope no one tries to steal one of them at the benefit – I’ll have to cut off their hands. I also thought about offering my gargoyle collection for table decorations – I forget how many creepy things I collect. So scurry off now, and enjoy your night or day, or afternoon, as will I – and keep sending the good vibes. And for those of you who send me cards, please continue – I love getting them in the mail, and they always seem to come at a time when I need them most – especially the ones from Jeanne. I’m sure I’ll be back later this week before this benefit to tell you all about how I was brutalized and made to cry by the kidney people when they go in after my tube. This time I’ll be taking the oxycodone with me. Delightful dreams my friend and happy adventures. Peace.


Return to Mania

I once asked to be tested to see if I was bipolar. Alas, I am not. I know it’s not a really cool thing to be, but I was just hoping for a rational explanation for my occasional bursts of mania. Like today. However, I believe that it must be the result of getting sufficient sleep and upping my effexor. I’ve been super weepy the last few weeks, probably because I wasn’t sleeping, and under a lot of physical duress, but the last three nights have been heavenly.

With that little intro, let’s dive right in to the Dr. appt on Monday. The new course of treatment is to alternate Tamoxifen with Megase. We all know how I feel about Tamoxifen, (and why I am procrastinating in taking it today) and Megase promises to be a joy too. So I am two weeks on Tamoxifen, then two weeks on Megase and then switch back. Both are going to fuck with my endocrine system, and Megase has the added bonus of weight gain, which is just what I need. I suppose it’s a decent trade off for a healthy holiday season. I got the vibe from Dr. K that he recommended that I do this treatment first before we consider infusion because it may be the last healthy Christmas I have, so why fuck it up. I’m okay with that. It was a good appointment, and I made it clear that I would prefer in the future to have my cyst drained first before we start shoving tubes into my bladder and kidney. He said his job is to keep my kidney healthy – I said I get that, but please, lets avoid the catheter forever. This visit’s minion med student was cute, she kept apologizing for the fact that cancer and the catheter/nephrostemy killed my plans for Riot Fest and The Fest, and made me miss the Bouncing Souls and Leftover Crack. I told her she was not responsible, but she kept apologizing anyway. Even when I almost ripped her head off when she said “so I understand you refused chemo before, are you willing to consider it now?” and I had to again explain I never refused anything, I simply asked for a delay if it wasn’t going to exacerbate things. Poor child. I was still sleep deprived at the time so I think she thought I was about to tear into her throat and rip out her artery. Anyway, I made her laugh and then she stopped being scared. I go back in January at which time we look at the next step. As for the pufferfish, I know it’s busy attempting to get back to its monster size, I can feel twinges and jabs, but I still have complete use of my bladder, so I’m down with sucking up the pain. And I want this tube out of my back in six days, so I will do what it takes. There were no scans this time, because they will do a scan when they yank the tube – unfortunately they aren’t like the cyst draining radiologists who show me the pictures live and all the goop they drained out. Dr. K found my excitement with seeing all that shit hysterical.

For those of you who have never dealt with chronic pain, you don’t really get what constant pain does to you physically and mentally. It keeps you in a heightened state of stress. Your body never really relaxes. My jaw is constantly clenched. Medicating it only does so much. You find a good position and you don’t want to move so you stay as still as possible. You do a lot of sucking in your breath and hissing. My situation is accented by the hole in my back that is constantly trying to close itself even though the tube is preventing it. And let’s not forget the promise of painful terror that’s on my mind when I think about them trying to remove it. Because they are going to lie to me and say they will give me a local to block the pain. And I will half heartedly believe it until they make me scream and leap of the table. It’s a game we play, the radiologists and I. Let’s hope it’s the last time.

I’m in a pretty good mood. I am super excited that my California friends will be arriving in a little more than a week. I have missed them every day I have been gone. It’s going to be quite the reunion. I’m keeping my drinking to a minimum though, because I want to keep these kidneys healthy and happy so it’s gonna be all about the water for the next two months. I see palliative care today at 1:30. I will probably not be the happiest I could be when I get back, but it’s a gorgeous rainy day, and I am going to enjoy the drive because I love how the rain makes the tree bark black against the last of the fall leaves. And fog, there will be fog. It also means idiot drivers, but I don’t think they take my blood pressure today so there should be no freak outs in the Dr’s office. When I went in on Monday, my initial blood pressure was 177/100. I told them to take it later and it was 138/80, which it was clear that it was high because of idiots on the road. After that, I am going to hit the nice wal-mart in Palmyra today because I need a few things. And I also want to stop and score some whoopie pies for Ranae because apparently someone’s band found the ones she had in the freezer. I have to get some for the California girls too, so they can take them back with them. By the way, according to the scale at the Dr. office, I lost 17 lbs since last month – it was probably a lot more but my two week binge of drinking a half-gallon of chocolate milk a day put some back on. Still that’s a lot of weight – just another 20lb and I’ll weigh what I did when Andy was born. Then only another hundred until I am back at pre-pregnancy weight. I’ve decided it’s time to lose the skinny clothes, because at this point, the likelihood of ever squishing back into my plaid pants is slim. I even went as far as getting garbage bags to put them in. But then that burst of housecleaning energy went out and I decided to blog.

Sorry this is so mundane today, but I’ll take it. I’d like some normal days. I’d like some time when I don’t feel any pressure. And once this tube is out of my fucking back I think I might even schedule a weekend away so I can go swim again in an indoor pool. You have no idea how the knowledge that I may never swim again, or take a bath or enjoy a hot tub was weighing on my mind. It’s one thing when cancer kills your goals and dreams by stealing your time, but it’s a whole other ballgame when it steals the little things too – like walking and swimming. This disease is such a huge mind fuck…the psychological destruction is really overwhelming. When you start to lose options in your life, the things you have left become all that much more important.

One thing I did want to rant about today is more about Andy than me. People tell Andy to be strong. That he has to be strong. He doesn’t. He has to be Andy. I will be strong for me. Andy can be strong for himself if he wants to be, or not. It hurts me that people have made him feel like this is his battle too – he is strong, but he’s also human, and he feels fear and uncertainty like the rest of us. Those are valid emotions and he needs to know it’s okay to have them, and to sometimes be okay with being terrified. Telling either one of us to be strong is bullshit. Both of us need to be able to be who we need to be to get through this shit. Everyone has that right. You get out of bed in the morning and you do what it takes to get through the day. Some days are good and some are bad. A week ago, I didn’t want to even get out of bed. But I said “just get through today.” until I could get out of bed without having to be my own cheerleader. It’s not about strength, it’s about will, and being able to stay in the present moment. I do what I have to. When I decided I no longer need to do it, I won’t. As I have said before, it breaks my heart that my kid isn’t able to enjoy being a 20 something because I am sick. I know the weight of having a parent with cancer, as I lost my mom at 27. I wish I could save him from all of this.

That said it seems to be time for me to hit the shower and head out to Hershey. Maybe I will post again later after the visit or maybe I will be too upset to do it, who knows? But I suppose I need to take that stupid Tamoxifen too. Have a good day monkeys, and give someone you love a hug. Or someone you like. It is #hugitouthumpday after all. Peace.


Sometimes, Life Throws Me a Bone

Tonight was The Menzingers at Union Transfer in Philly (awesome set, nice venue) with Mewithoutyou (great performance) and two other bands…one I missed because they closed a road in Fairmont Park and put up no signs causing mass chaos and delaying us. Got to hang out with Lizz and Blaine and had a mostly painless night. It was a rough day emotionally, so I’ll take the absence of any kind of pain.

Picture it – 2am, there I was, driving home in the rain, Andy passed out in the passenger’s seat. I was listening to the Jealous Sound, enjoying the dark, wet night, singing (or wailing as some might say) when I notice something that looks like a leaf crossing the road. It bounced 3 times before it I realized it was no leaf, it was a frog. A very brave frog who decided to cross the road. She was just a wee thing. But it reminded me that life is tough and all, but it’s got cute little surprises now and again. A brief bit of joy in the night. AND then I saw a second one. Double happiness. Two tough little buggers.

But because I am me, I immediately thought perhaps this is the apocalypse, and it’s raining frogs? Or does it rain blood? I forget.

In other news, I bought a panda suit today. Because life is too short to not have a panda suit. Really I just wanted the head, but apparently all the available panda heads are just ugly. I can’t wait to sit on the porch and wave to cars.

And I’m thankful.

And now, I’m going to crawl into bed, and watch last season of Vikings again. Goodnight pumpkins, Dr. is Monday, so I’ll be back soon.


Tarpits, Minefields, and the Joy of a Tuesday

Well here it is, Tuesday. I feel like I have slept most of this month away. I am up and awake now, before 10 am, out of bed, which is crazy, because the only reason I was getting out of bed before 10 am for the last three weeks was for dr. appointments and to puke. It feels strange and wonderful, and shaky. I’m craving a mint hot chocolate, but today is shower day, which I can’t take until Andy is awake to do a new bandage on my back.

So what’s new in my world? Lots and nothing. I’ve been down with the sickness pretty much every day. I feel better one day, and think I can actually be social and do things, and then someone is unknowingly carrying a rare virus that is usually defeated quickly by your immune system until it gets to me, and then hello, it’s a human with very little resistance, let’s dance. I am sure I’ve endured the black death the last few days, and probably some extinct pox. I’ve puked more in the last 30 days that I have in my whole entire life. And that’s with using appropriate nausea control techniques. And the things I have puked in and on are countless! Plus let’s not forget that tube in my back that gives me an added thrill every time my automatic nervous system spasms. It’s good times.

The tube in my kidney. What a pleasure source that bad boy is! I did get a mini-reprieve with it, though. When I went in for my tube change, I laid down my case for why it should come out, and almost won. But using logic, my plan was confounded. We agreed to leave a tube in, capping it off, sans the pee bag, for two weeks – if my kidney goes back to doing it’s job without complaint, then they will pull it. In the meantime, I’ve discovered the sweet spot on my hip where I need to place my hand when I need to cough, sneeze or breathe deeply, so I am not thwarted by pain.

But let’s talk about pain. Last Wednesday, I went in to interventional radiology to have the tube change done. I took a couple oxy and some medicinal herbiage before the ride so I’d be more comfortable when I got there. I was. Then they promised me some more medicine, when they did the procedure. Unlike the draining of the cyst, I don’t believe they give you any medication to help you be drowsy. No, they are very kind to you, promising pain relief until they wheel your ass in the procedure room. Then they tell you to get on your stomach, put your arms above your head and trust they will not hurt you. They lie. First they start poking you in the back with needles they claim are local anesthetics. Just a pinch they say. Just a pinch. Just a pinch of the claw of giant crustacean tearing into your flesh like it intends to eat you. I stay surprisingly still for the first two shots. Then the third hits a nerve or something and I elevate three feet from the table and mutter “ouch”. I think the team realizes that they might have hurt me. Now, I am shaking from the pain, and it’s freezing in there, so I shake for the rest of the procedure. They took out the old tubing and put a smaller less cumbersome tube apparatus in there. They did a really good job with the bandage. I get to roll back on my back and go to recovery. I’ve done really well they tell me. I just want to go home. They must have given me fentynal at some point because I’m mostly not in pain now. I get dressed and they even let me walk up to meet Andy.

I was hungry. I wanted one of those turkey and cranberry sandwiches from Panera. I went in with Andy at first, but realized I needed to be back in the car, so I gave him my order and went outside. He brought out the goods and I ate a cookie and some lemonade. I thought I was going to be fine. Just not really hungry. The sandwich could wait. Then the meds started to wear off. I didn’t bring any with me. In the next ten minutes, my pain went from 2 to 2.4 trillion. Every inch from my waist to my neck on the right side of my body was a fucking minefield of pain. I do not exaggerate when I say that speaking hurt me. Breathing hurt. Coughing was some primitive torture activity. I couldn’t cry, I couldn’t talk, I could only whimper like I was hit by a car and left alongside the road to die. I wanted to die. I wanted fucking morphine.

Finally we go home, I thought I was going to be okay. Then I tried to get out of the car and walk into the house. Every fucking step was a new adventure in torment. I got in the house, and faced the steps where my safe bed and vial of oxy were waiting for me just a few hundred steps away. And every step found me crying and moaning and doubting that I would ever get to the bed. But I did. I shoved some oxy in my mouth, and advil, and tried to smoke but couldn’t really inhale. Then I tried to lie down. That was not easy. I literally had to throw myself down on my right side and not move from that position. I told Andy if I didn’t get some relief in an hour, that we would need to call an ambulance. I was having really bad pain in my chest and back and I was scared it was serious. But I also tore cartilage in my chest before and it often would be painful if I was in a position that pulled at it again, so it could have also been that. I was hoping it was that. I nodded off for an hour and when I woke, I wasn’t in as much pain, so that was good. I was still paralyzed and unable to move, but I was no longer in fear of imminent death. Another four hours of sleep and I was almost able to move. By morning, I could actually sit up. A few more hours, and I could walk. Things were improving.

I couldn’t make my appointment with palliative care. Reschedule. I didn’t have the strength or the energy. I had to blow off the Bouncing Souls show that I was so looking forward to. I shouldn’t complain, my kidney was working and I could move and most of the time, breathe. I was still having trouble coughing and sneezing. Then the black wave of depression crept into the space where pain had been hanging out in my brain, and down, down, down, way fucking down, we went. If you don’t have depression, you can’t understand. I try to make it as visual for the untainted as I can, and this was like the La Brea tar pits of depression and I was a fucking woolly mammoth. It was all over except for suffocation. That sucking quicksand of sorrow ate me up, and the crying started. Without belaboring the incessant crying and snot-blowing, let’s just say thoughts during the breakdown run from “I’ve failed as a mother, and Andy will hate me for the rest of his life” to “what the fuck have I done with my life?” to “I’ll never get that PhD, great work dumbass.” Until you really spend a lot of time reflecting on your life and the possibility of a very short future, you can never understand that level of sorrow or failure. People can tell you otherwise for hours, but you can tear any positive self image down to smoldering ash in a matter of minutes when you start to consider things that will most likely never happen because there’s just not enough time. I’m just now starting to realize the psychological impact this disease has on me. I keep it together most days, but when this shit crumbles, it goes down hard and and fast.

I hate to keep harping on this but I feel I have to remind people that I write this to sort through what is in my head more than anything else. If the details of this fucking monster inside me helps someone else, I am thrilled, but writing is always for me. I love that people read it, I love that people comment on it, but I love the way I feel drained and empty when I stop writing, like all the shit that swirls in my head has finally been released or at least organized. Writing also scares me – when I see what I have only been thinking appear on the page it’s like tearing off a scab and wondering if it is ever going to stop bleeding. How raw this gets depends on how much pain I am in when I write – and sometimes I hold back because I can’t face another entry that is just all about my grief, and I know I shouldn’t. I can’t – because there’s no where else I can go with this. I know there are therapists, and I know I have friends, but let’s be honest here, very few people pour out what is really inside to anyone else, because we all want to keep our pain, our shame, our fears hidden. If you don’t, I admire you – I know I have secrets no one will ever know.

So now it’s evening – I went out for a bit today in the car. Visited work until I started to feel nauseous and then took a ride and spent some time in a cemetery until I felt better. Then I drove and cried and screamed and came home exhausted. Smoked my nausea away, and hoped for sleep, but no, my feet are twitchy and my legs are restless and so is my brain. Part of it is knowing that next Monday we’ll be talking treatment and progression (or hopefully, lack of progression) of this stupid C-monster and the damn pufferfish. And as many of you know, my friends are hosting a benefit for me on November 7th here. Some of my oldest and dearest friends from California are flying in and I am thrilled – it’s going to be amazing to see them all again. And I am sure many of my dear friends that live here will also be there and I am so blessed and grateful that they are doing this for me, but there’s a huge part of me that realized just now that it’s like saying goodbye to my loved ones and I don’t know that I am ready for that. I know that sounds negative, because anything can happen, and I do believe that, but I am also very much a realist who prepares for the worst, and the very thought of maybe never seeing them again after that weekend tears my fucking heart out. Just like every day that I wonder if I have told Andy every thing I want him to know – and hope that he knows that he changed my life and I love him more than I have loved anyone in my life. That, my friends, is my nightly terror – leaving my son alone in this world. I don’t care about anything else. I just want to make sure that my baby is going to be okay and that he knows how sorry I am that all this has landed in his lap during the time of his life when he should be discovering what he loves and who he is and he’s stuck taking care of me. And the tears flow again.

I was trying so hard to keep this light and fucking positive and I can see that that has been a huge fail. So much is undone. And you’ll think to yourself, well get out there and do it! And the reality is that there are somethings you don’t just “go out and do.” When faced with what you are going to do, you have to let go of the dreams you had that can’t possibly fulfill because it’s just not possible. And you grieve for all of them. So much grieving. And even as I type this I’m trying to self-talk myself calm – I want to bolt and stop writing because it hurts so much. But this kind of pain is progress. Unlike the physical pain – which is nothing more than annoying. And at this point, more of an annoyance than a hindrance. There’s that at least.

Well, I am spent for tonight. I’ve tried to enhance this post with some cemetery pictures from today. It didn’t work. Maybe I didn’t save them in the right format. Who knows. The featured image was supposed to be this crazy tree that is way at the back of a pretty hidden entrance to a cemetery I frequent. It always has artificial flowers attached to it. And it’s updated regularly for the season. I like to sneak into the cemetery that way so I can check out the tree. People don’t appreciate the subtle beauty hiding in the places most people ignore. I’m always going to find my happy in an interesting cemetery. It’s like water is to my soul. Maybe Saturday when we go to Philly, I can convince Andy that we need a stop at Laurel Hill…it’s such a beautiful place in the fall. Just so I can take a drive through and enjoy the trees and death and decay. I am going to head to sleep, so I wish you sweet dreams, cupcakes. Thank you and come again.


Just A Little Bit Before I Try to Sleep (Again)

Ha! Tomorrow I go to interventional radiology to get my tube removed. So, ok, maybe they are referring to it as a tube change, but I am going to present a very well formulated argument about why it needs to come out. There are totally legit reasons, aside from the nagging pain and tugging hose. For example, my immune system is constantly on high alert preventing infection and trying to heal the holes in my back that don’t exist there normally. All that energy spent on fighting fungi and plagues and rare disease spores doesn’t give me much energy for anything else – I’m good for about a day a week. My immune system would benefit from a break and since my bladder provides me with nothing but happiness and joy these days, it’s clear emptying the guts from the pufferfish, was beneficial in relieving the hell of my pelvic region. So, using logic and reason, I have also deduced that my ureter is probably not being crushed any longer at this point in time, in which case, we can remove the hose from my back.

I apologize for my lack of writing – most of the last two weeks I have been horizontal, except for an afternoon in Hershey, and D4 last Friday. I just opened the computer for the first time since Friday. I’ve been subsisting on chocolate milk, crunchy Cheetos and mac and cheese – and a very delicious and fiery taco that Andy brought home from the taco truck he found. I have developed an unnatural addiction to chocolate milk in the last two weeks which must mean my body was lacking something. I had a few days where I plunged into darkness and cried endlessly and sporadically and could only sooth myself by taking long drives in the car and screaming in peaceful forests and valleys. I expect that will occur again after my Dr. visit on Thursday with palliative care. So I’m downloading some more music to my phone. And let’s not forget it’s FALL, which means things are dying everywhere and winter is coming and as we all know, this has never been a cheerful time for me emotionally, because not only is everything dying around me, the people who have meant the most to me who have gone to another place or body, left me in October or November. And then there’s all that turkey death. Dead, albeit delicious, turkeys everywhere. I hope I am up to cooking Thanksgiving dinner this year for the boy and I. Maybe we can have a thanksgiving picnic/food fight like we did when he was two. Good times.

Okay, I’m adequately drowsy now so I can get some sleep before it’s time to get on the road. I can’t have anything to eat or drink after 6 am, so I have to get up before then for my chocolate milk and toast. Or I’ll end up trying to bite a nurse when I get hungry and that never goes well. I’ll try and be more consistent about this blog. I mean I need to write more just for the sake of clearing out my head – I just have to be able to sit up to do it, and that’s been sketchy lately. Chemo never made me as weak and sick as I have been these last two weeks. I am just glad I kept the circle I infected very small because no one deserves to suffer like that. So my friends, and visitors, and passers thru, please send positive thoughts and vibes and animal/insect/fish/vegan sacrifices my way, so that the frankentube is history as of tomorrow. I promise more stories in the days to come. For real.


Falling Down a Rabbit Hole

It’s Monday. I’ve lost a full week. I’m sitting up and made my own bagel for breakfast after enjoying several trips to the bathroom to pee, which since Dana is gone, is a celebration each and every time. I’m working on scheduling doctor appointments and getting up the energy to leap (that’s a fucking exaggeration – I am not leaping anywhere anytime soon,) I am happy just to move forward without falling or gagging or wretching. I puked more in the last week that I did throughout both times I did chemo. Which is a special time when you have a catheter and a nephrostemy, because you may not know, all that shits connected in bizarre ways, and that nephrostemy tube in my back moves in and out as my kidney moves, so when your stomach is twisted up and hurling all that ice water back you just drank back into the sink, it’s also trying to simultaneously push out the catheter and the nephrostemy tube, which being sewn into your kidney and back is being torn out unless you put your hand on it to hold it still. This feat, called contortionism, requires that you twist your right arm completely around in your socket to put your palm on the bandage. This leaves your left arm available for all of the following: keeping you from slamming your face into the sink or holding your stomach, or covering your mouth if you are on your way to puke again all while making sure you don’t step on Dana or get it caught on something. Fucking phenomenal. Then you can try to brush your teeth and hope it doesn’t spawn a new round of hurling. This is followed by return to bed, where you freeze, sweat, freeze and then not be able to figure out of if you’re freezing or on fire. Only ginger beer brings a smidgen of relief. I didn’t even want to sit up long enough to medicate with my fine herbal medication.

So here it is Monday. I’ll eventually write more. For now, I’m sorry if I missed your birthday, or ignored your text, or message or didn’t respond with appropriate enthusiasm to something you said or did, I’m sorry. I went to see my brother and his wife and spend the whole time puking in their bathroom and spreading disease. Today is the first time I even opened the laptop in five days. I’ve spent more of the last week crying and wishing I could just die than I have the last 10 years. And now I’m about to make an appointment with palliative care, the call I never even thought I’d be making.

That said, OWTH was fucking amazing, as they always are, as was spending time with the Erica, and Denise and every one else. Ryan, I hope I can get a bunny shirt on Friday at the D4 show. I’m going to stop now, because I realized I am purposefully avoiding making this phone call. And at some point, I’m gonna need to shower and get in the car and get some sun on my face. Be well. Love each other, and get all the hugs you can. Even if it spreads plague.


Pufferfish Takes Its Show On The Road

Joyeux après-midi, mon petit kangourou amis I’ve been putting this off, not because I didn’t want to write it, but more because I am mostly a miserable bitch these days, and I don’t like that part of me. There is no position in which I am comfortable – the best I can get to is tolerable, and that takes a special medication combination that usually ends up with me falling asleep while typing. Or forgetting what I was typing. Or both.

WARNING GRAPHIC DESCRIPTION OF THE PERILS OF THE PEE BAG AHEAD. If you want to skip over the gruesome details stop here and pick up at the word SAFE.

I just need to bitch right now before I get into the trip to John Hopkins. My thighs are covered in black and blue marks from the tape constantly pulling as it holds the vagina tail to my thigh. It makes me feel like I have to pee constantly. Today there was all sorts of blood and clotty strings in the bag – gross as it is, it’s kinda like a sick set of sea monkeys. This is somewhat alarming when you go to bed with normal pee and wake up to bag of fruit punch. All the walking I have done this week cause irritation in the urethra and caused bleeding. I called urology who told me to stay in bed and drink more water which is silly, because the more water I drink, the more often the sacks of pee need to be drained. Then sometimes it causes a spasm, and then there’s more blood and tissue scooting along the tube. It hurts. I try not to take opiates and just stick to natural cures, which helps most of the time, but the last few days it took the muscle relaxers, medicinal herbs and tinctures and opiates to try and get to a point of just calm. And the hot flashes are still happening, not as often, but dear dog, just let me sleep. The nephrostemy is a piece of cake compared to the catheter, although the last few nights I wake up with the nephrostemy bag ready to burst because that kidney works really hard at night. Rant over.

SAFE TO RESUME READING

Andy and I made the trip to Baltimore to Johns Hopkins to get a second opinion yesterday. It was actually a pretty easy ride, it took just under 3 hours and we did not get lost once. I had to super medicate for the ride, because I didn’t know what to expect being in a car that Andy is driving for that long in my present condition. Needless to say I was quite comfortable when we arrived at JHOC. Well not really, with my vagina tentacle currently holding me down, I’m not ever really without discomfort. I suppose I could really just say I had a really good attitude when we arrived. Andy dropped me off at the door and I found my way to where I needed to be. I found the Women’s Health clinic on the 6th floor – JHOC is huge. Kind of intimidating. You get a wristband as soon as you enter the building – it’s like going to a show. Then there are there touch screen check-in kiosks when you get to where you are going. I tried, but I couldn’t get registered that way. Of course not. When I finally did get registered, I was handed a questionnaire and herded off to the waiting area. And wait for Andy and my nurse navigator to find me. While I was waiting, another female patient came back to the waiting area escorted by a nurse; she was clearly unhappy and shouting about how she should have gone to another hospital because they aren’t giving her the help she needs here. I’m trying not to judge, but her whale tail draws my attention as she’s huffing and bellowing in a seat four seats away. What I want to say is, bitch this hospital is ranked 6th in the nation in treatment, where ya gonna go? But I just keep answering my questionnaire.

I am supposed to meet my nurse navigator here. She said she’s meet me at 1:30, and when I look at the clock it 1:40, and I realize my ringer is off. I rifle through my purse, and find my phone and sure enough I missed her call. I quickly call her back and let her know I’m waiting, when they call me back to the exam room…she’ll meet me there. The nurse brings me back to do my vitals, and the nurse navigator arrives, her name is Liz. Introductions ensue, and I do some deep breathing exercises and surprise surprise, the combination of herbal medication and meditation has kept my blood pressure low. I’ve lost more weight. I’ll take that. I confess to my use of plant medication, and then of the JHOC minions comes in to review my medical history (because she didn’t have time to go through the 5 discs of medical history I provided to them minutes earlier). I tell the sad sad tale of the tumor gigantica and the first series of chemo and then the emergence of the cyst and its current incarnation and end with me crying that the tubes are not letting me live my life and that I how is this quality of life. The minion is very compassionate. They teach bedside manner well here. I regain my composure and make jokes. The Pietkiewicz Way. When faced with horrible circumstances, make a joke. Make many jokes.

Andy asked me on the way what I was hoping to hear at the appointment. I told him best case scenario would be to have them say “we’ll whisk you into surgery tomorrow and cut that cyst right out” and worst case is that I leave the way I came. I relay this to Liz and the minion, Shanae. I just want to be able to walk and sit and sleep without encumbrances and pain. That’s all. I don’t even care that my days are rather numbered – all I want is for them to be good days. I don’t like the bitch this pain is turning me into, I don’t like that taking a shower or making a sandwich or getting some juice becomes a gargantuan task that requires a logistical plan to move myself and my coterie of pee bags without any tubes catching on something or dragging behind. I just want to not have to wear a long skirt to go out to hide my vagina tentacle I hate the spasms and gasping when the pain shoots through my bladder. I hate that I feel trapped and isolated and incapacitated. I feel cheated.

I feel I am keeping it together pretty well. My mouth is drier than the sahara and I am out of water. Finally the Dr. comes in. What is with the Drop Dead Fred look these days? He’s a much classier DDF. He sits down, and we do a quick review of my history again. He’s a really nice guy, and probably just 30 years old (Ashley F, are you reading this? I didn’t see a wedding ring, you could be a stay at home mom, like for unicorns or cats) He’s rocking a emerald green and royal blue ensemble, so he’s a man of fashion sense and confidence. I like him. Then I brace myself for what’s to come. No, surgery isn’t an option, and not just because I’m a big girl, but because the cyst is smack dab in the middle of the area where I received the radiation treatments when I was first diagnosed. I already knew that I had received my lifetime dose of radiation in that area, which is why there was none this go round. When you get radiation, it forever damages the tissues in the area. This makes them slow to heal and regenerate if you cut into them again. And removing the cyst would require clearing the margins around it which as we know means goodbye rectum, bladder, and vagina, and hello tubes and bags (not all that different from my current rig of hoses and external bladders). And that would entail the removal of a massive amount of tissue in an very damaged area which would be brutally slow to heal and would run the risk of massive infection. The risks of that surgery would far outweigh any minimal benefit and would likely shorten, and without question, diminish the quality of, my life. He would start me on a regimen of more Tamoxifen (boo) and Progesterone which has the delightful side effect of making me even fatter and more miserable emotionally, or since I am not a big fan of Tamoxifen, there is a chemo drug called Doxil which has had some success. Don’t google it. It’s terrifying, but it could work. There’s some other hormone therapy and medications that have shown some success. The prognosis isn’t going to change. I have recurrent endometrial stage 3b cancer, that shows signs of metastasis in the lungs. It’s got a super low survival rate. Recurrent endometrial cancer isn’t one you survive. That said, Dr. T said that the issues I am having now are not really a result of the cancer, and in fact, the cancer is slow growing, and is mostly contained, and that the cyst is the source of all of my woe. For this, we discussed the risk of putting a drain in the cyst for several months to keep the fluid from building up and the possibility of it seeding cancer elsewhere vs. suffering with a catheter forever the duration. As the brutal urine extraction device is painful and unwieldy, I would rather take my chances with the drain. Dr, T agreed that at this point the risk is worth the procedure and said he would recommend that to Dr. K in his notes to him. So hopefully, the visit on the 21st will begin with “let’s pick a surgery date for a drain”. Dr. T said that if Hershey’s interventional radiology still doesn’t want to do it, then give him a call and see is JH’s interventional radiology will. He said the other option is another nephrostemy, but not a really good option. Finally, he said there is the smallest of possibilities that I could participate in a trial that is currently showing promise at JH, and just was published in a medical journal, but he would need a slice of my tumor to find out if there are these special satellite cells in it, because my tumor would have to have them in order to be considered for the trial. Other than that, Dr. T said he would have done exactly what Dr. K did, and would alternate chemo with hormone therapy as my cancer is not aggressively trying to take over. He brought up quality vs. quantity, and I quickly told him that I’m on the side of quality – that being riddled with silicone piping in my excretory systems is not how I want to go out. I would even suffer the permanency of the nephrostemy tube, if only, oh my dog, please, if only I don’t have to live with this catheter.

He also said that I should just continue treatment with PSHMC’s Urology department too. We discussed the potential for self catheterization during the day, and with the difficulty they have had inserting catheters in the hospital because the cyst is in the way, why would anyone think I would have an easier time of it at home? He did say there is a suprapubic catheter that could be inserted into my bladder through my belly, and while there would still be a bag, it would not be brutal and painful like the vaginal one is now. Wicked cruel vagina pee serpent. All I know is that it needs to go. It’s like a fucking albatross, except it’s not around my neck, it’s shoved inside me. So there you have it – even though I left upset that there was nothing else to really do, that wasn’t already being done, I felt validated that my Dr. was doing all he can. I knew that in my gut already, because it clearly pains Dr. K to give me bad news, but now, I’ve heard the same things from another well respected professional, so I can just say fuck off to the next person who says “there has to be something else they can do.”

So I held my breakdown in check until I was in the car, and even then, Andy and I just made death jokes. Being told this kind of news takes days to sink in, the sheer magnitude of what it means is overwhelming. I know I’ve told a handful of people personally, but with shitty news like this, blogging about it is easier than texts or phone calls. I don’t have to hear people tell me their sorry. I don’t have to see sad faces. I don’t want to be around people who are saddened by this. I want to spend my days laughing when I can. I want to say cancer fucking sucks. So I called my little fucking hummingbird friend Debbie, and had the conversation that only someone else who has had to face cancer can truly understand. And at the risk of alienating people, I need to be brutally honest, just give me fist bumps, stop asking me how I am. I have cancer, I’m sick and in pain, that’s my fucking reality and I am tired of pretending that my fucking world is fine. Yes, I can still laugh and smile and appreciate the beauty of the world around me, but asking me how I am doesn’t help me or you. And stop talking about miracles and me kicking cancer’s ass because while it may happen, it probably won’t – and I am not being pessimistic, I am a realist. I’m going to do all I can to prolong my life as long as it fit in with what I want out of life. Please don’t tell me what you think I should do, unless you yourself have been in my situation. Because until you are here, you don’t fucking know. And stop talking about this being a battle, and being a survivor or keeping up the fight, because you what that implies? That if I die, I failed. That I was not strong enough to overcome this disease or that I didn’t have the strength or will to beat this disease. That’s a judgment on me that I don’t need. Bottom line is this: In a perfect world, I will live a long disease free life. In a perfect world, I will go to my next appointment and Dr. K will have a cure. In a perfect world, no one will ever have to go through this again. It’s not a perfect world, and while I am not giving up hope that things can turn around, I am also not going to live in fantasy land, avoiding the very probably outcome. And I am gonna make death jokes. Because I can. I know I’ve said some of this before, but it bears repeating. I am comfortable with dying; I’m not afraid of it, but I am not going to stop living to wait for it. I am not ok with what is happening, but I am not going to sit in the window and wait for death. Support me by spending time with me and laughing with me. I need as much laughter in my life as I can get. And there are only so many names Andy and I can come up with for the hideous hose that rules my life right now. (Thank you Deb, for the conversation that was long overdue, and for letting me rant and not trying to make anything better, punches to you my friend)

Well it’s taken two days to write this. Oh and one other thing – think about this whenever you have to talk to someone who has something unfortunate going on in their lives – don’t say “ I felt so bad when I heard” or “I feel so bad that I didn’t know” – you know what that does? It makes the person feel like they have to make you feel better, which is the exact opposite of what they need. I hate that people get upset when I lay out the facts, because I feel like I am hurting them, and what I should be doing is using my energy to stay healthy. Not trying to make you feel better about my disease. I know it’s all done with love, and with a pure spirit, but it makes me not want to talk to anyone because it’s hard work to make other people feel better about my sad news. And now that I told the story, and vented, it’s time to release the sea monkeys in the pee bags to the ocean via the toilet-ocean pipeline, and then take some more pills and go to bed. I plan to venture out in the morning with Andy to go get supplies, so I can stop suffering from the assault of this nasty tape that is holding on my bandage on my back.

On the positive side of things, you can order replacement catheter bags from Amazon. I got to have onion rings when we went to JH. It’s only three weeks til OWTH in Philly/Baltimore. And since I can’t go to Riot Fest, I can use that money to get my passport. Sleep well my friends, and visitors, and critics. Hug your people and tell them you love them, and tell them how much they mean to you. And appreciate your excretory system. For real. Love you all.


This GIrl, Her Pufferfish and a Kidney Walk Into An ER…

It’s hard to believe that it’s barely over a week since I saw the oncologist. Last Monday, I was pretty happy, normal person, albeit with a massive pufferfish exploding to new sizes in my pelvic cavity. And now my world is fucking upside down and I am angry, hurting, scared and lost. So I caution you now, this mostly fueled by the anger I have for this fucking disease and is going to be graphic, and will likely include overuse of the word “fuck,” but at this point, I don’t even fucking care. You might. I don’t. You’re not the one with the giant pee penis rammed into their vagina like a rolling pin, walking around with pee bags attached front and back because your body fucking betrayed you more than you thought it could. I am.

So yeah, there’s humor in here, but only because being fucking bitter makes me funnier. Let’s tell the story. We all know that the whore of a pufferfish is still growing in my pouch of Douglas. We all know I wanted just two more months of no treatment so I could have some fun before I got really sick again. I was dealing with the fact that the stupid c-monster wiggled around in there, sometimes blocking my bladder, sometimes causing me real pain, but things were working for the most part. I was dealing with the almost hourly trips the bathroom at night, the lack of sleep, the constant urge to pee at night. I could live with it, as annoying as it was. Until the ability to pass the pee stopped on Wednesday night. And I am going to get even more graphic here because what the fuck, I have to live it, so maybe this will help someone else who deals with something like it. On Wednesday night, the 12:30 trip to pee ended in a couple drops and about 40 minutes of cramping, cursing, writhing, crying, more cursing, wriggling, standing up and sitting down, and frustration. Sleep five minutes. Back to the bathroom, repeat. All fucking night. For those of you who have given birth to spawn vaginally, imagine that moment when you want to push and they tell you to wait, and there’s all that fucking pressure and you’re just like when can I push this monster out of my uterus??? Well that was what this feels like. I’d been dealing with a milder version of it for months, but at least then it ended in finally being able to pee. Not this time. The sun came up and I got ready for work. Usually I had no problems during the day, because the movement of being up and around would move the cyst away from whatever it was blocking, and I could be normal during the day. Not this time. All morning, nothing. And it is as uncomfortable as anything you could imagine. I google my symptoms and web md tells me I should probably go to the ER. We agree. And off I go.

Since I won’t see a Dr. anywhere but in Hershey, I make the hourish drive there. I’m doing great until I hit Hersheypark. Then my bladder, deciding it had had enough fun with me for the day, bursts like a fucking tsunami in the car without warning. And what do you do when you are pissing yourself at 60mph, and there’s nowhere to stop, and what would you do anyway, if you could, stand on the side of the road and drip? AND it’s raining. AND the get gas light just came on. I did what any normal person would do, I drove to the ER and parked the car and panicked. No blankets, no towels, not extra clothes, soaked in piss. In the rain. 200 feet from the ER. I can’t go get dry clothes at home because I would need to get gas and I can’t get gas because I’d have to get out of the car. I can’t just run over to K-Mart and get some dry things because I am soaked in pee. Finally, I try calling some friends to see if they can run to my house, get me some dry clothes and bring them to me. My friend Lori agrees to help me out and while I am waiting, I decide that I cannot sit in the car in this state for over an hour. I call the ER, and ask them if they could send someone out to get me with a wheelchair or something. They do. And I cover the driver seat with shop towels to try and soak up the mess.

The ER was awesome. They got me right to a room right away, and got me out of my pee-pee pants. I have to say that the ER staff was downright amazing. Now, my body has agreed to let me pee a bit from time to time. At first we’re just going to make sure there’s no infections or what not. I point out that I know it’s the bloody pufferfish’s fault. They do an ultrasound on my bladder and kidneys. My bladder is full. Even though I just successfully completed the attempt to urinate not two minutes before. This is not good. My kidneys look nice, but the right one is showing signs of distress, because the beast in my belly is putting a kink in the right ureter and urine cannot pass from the kidney to my bladder as efficiently. While all the poking and probing is happening, Lori, my saviour, arrived with dry clothes, and my bff Kelly came to visit and brought me a phone charger. You see there’s wireless in the ER, but no cell service. So I need to put my shit on blast on Facebook (which I’d probably do anyway) to try to get messages to the people I would usually text. And for that, I need my phone to be charged. It was like having two guardian angels in the room. All the while they were there, we’re kind of just waiting. I am getting scolded by the wonderful nurses for escaping the monitors they have on me and leaving my room. We set the bed alarm off trying to figure out how to make the back go up. We ring the nurse just to ask her if our pizza is here yet. We make their jobs fun.

Finally, the resident surgeon from urology comes in. We talk about how I was going to have a consult on Tuesday about a stent in the right ureter. I am still not sure how that is going to help the bladder issue, but I am not the medical professional here. He’s hot, not super hot, but definitely a cutie, and probably barely older than my son. Oh good, and now he has to examine me. Now, I know a lot of people say that they don’t care about how they look when they’re sick and the doctor is examining them, but I am not one of them. I am completely self conscious about being obese, with radiation scarring, the myriad of scars from laparoscopies, and my sad sad vagina. I don’t really want to look at my vagina myself, so I feel bad when others have to. And that’s sad, because the vagina and I had a lot of good times together, but that was over 20 years ago, and now, it’s just another body part to betray me. Cute Dr. Brian gives me some options – get a catheter and come back Tuesday for the stent, consider just getting a nephrostemy on the right kidney today, or next week, do nothing, or just get a catheter. I say we should just try the stent, and then see what happens. He goes off to consult the attending, I mentally try to remember his full name for my friend, Ashley, who needs a rich doctor husband.

In the meantime, Kelly and Lori have to leave…it’s becoming late and it doesn’t look like I am going anywhere. Nurse Kristen tells me they are just waiting on urology. Dr. Brian comes back and says, “Hey, I forgot one option, we could admit you and do the stent in the morning!” I like that option. I’m getting a catheter anyway because they will need it for surgery, and Dr. Brian initials my right belly with his purple sharpie so they don’t screw up and put the stent on the wrong side and he’s gone until the morning. Nurse Kristen brings in some helpers to do my catheter, a nice young lady, and another cute male nurse. Oh fuck yeah, bring on the vagina/body image shame round two. Kristen tried to put in the catheter, but it won’t go in, the male nurse is just hanging back and Kristen and the other female nurse go back and forth, trying to jam this thing inside and it’s not going. Finally, they ask the male nurse to do it. He manages to get it in the urethra on the first try, and I breathe a huge sigh of relief that that inhumane torture is over. Or is it? Then they start an IV. The first bag is fine, until the vein blows up and now we are on to the other arm. All this time my blood pressure is through the roof because I am in pain, terrified, and don’t want a hole in my kidney. I break down once with nurse Kristen, and once again when Dr. Brian comes back to check in about tomorrow’s surgery. Kristen puts the IV bag on a hook in the ceiling so I can no longer get out of the room. I am trapped until I am admitted. Five minutes later they come to take me to a room; then immediately cancel it, because they now can’t take me to that room. I remain in the ER.

I have to say that Kristen was awesome when I was crying and sobbing about how this is so unfair, that I have plans for the next two months and how this was not supposed to happen and then cracked up when I said that I didn’t even get any of the good side effects of cancer like losing weight. Not me, my appetite is just fine. Then she said that patients like me are the reason she is a nurse, and that she was grateful to me because sometimes she forgets why she does what she does, to be there to comfort people when they are scared. She said she wished all her patients were like me, and she just held my hand. I don’t often say things like this, because I’m not gonna lie, I have some unresolved shit with my dead mother, but in that moment, it felt like my mom was there trying to make me believe it was going to be OK, because my mom was a nurse too. I was so grateful to Kristen that night, and even more so when she tried to find me jello and could only come up with two vanilla ice cream cups which became that night’s dinner. (I also had a turkey sandwich, later).

Pause here for a breaking funny story:

Andy comes in after his shower, and I tell him that Urology won’t even see me until September 14th, which means I can’t go to Riot Fest or the Whoopie Pie Festival, because there’s no way I can be up and about with the giant pee hose stuck in me for a drive to Chicago, as I am only comfortable standing or lying down, he does what Andy does best – he offers this solution:

We could get a u haul and attach it to the car and throw you in it on your back, and punch some holes in the side so you could breathe back there or maybe get you an oxygen tank.”

How can a mother not be incredibly proud of such resourcefulness?

Back to the ER now. So the evening wears on – I am being admitted but who knows when? I am now forbidden to eat or drink after midnight as I will be having general anesthesia for the stent procedure. I suck down all the water I can before I become gremlin-like. They pull my IV off the ceiling and put it on an electric pump. I get a new IV in the opposite are because the other one is swollen like a bad molar. Around 2am, I am being moved to a new room. It’s all the way at the end of the hall of a new section of the ER that I have never been in before. It’s dark, and it looks like the holding cell for psych patients at our local ER. Not the psych hold thing again I hope. But in comes Nurse Dan. Again, a handsome young man who will probably take a look at my hideous nether regions. More anxiety. The way they have my IV inserted in my arm, every time I move I set off the alarm on the pump and Dan has to come running. He kindly asks me if there’s any possibility of being pregnant. I snort, and say nope, no uterus. He asks me my favorite question “when was your last period?” I proudly state 2011. When I answer my fifteenth interrogation of the night, I try to sleep. Only to be woken by some maniacal woman down the hall screaming at 5:45 am that it’s her health choices and she’ll make them and then screaming for Dan to get in there. Poor Dan.

Finally cute Dr. Brian and his attending and some other medical minions come to see me before surgery; I tell them that I thought it over, and if they cannot place the stent then do what they have to make my kidney well, and if that means nephrostemy, then that’s what it is. They are glad to hear this. And I am whisked off to surgery. When I wake up in recovery I demand jello, and discover they could not place the stent. Nephrostemy it is. That will come later. That one is an awesome “twilight” procedure, which means my ass will be awake. Oh fucking yay. Fortunately, that does mean I can eat jello. And drink water. No food, but at least there’s jello.

In between procedure one and two, I am taken to the second stage recovery from same day surgery. While I am there, the kindly nurse gives me some IV dilaudid/fentynal to help my pain. It brings me joy. Then two minions from gynecological oncology come by to see me, and tell me Dr. K is out of town, but they will see his associate this afternoon, and she will probably come over this afternoon. When they tell me who that associate is, from my drug fueled fog, I become lucid enough to tell them “don’t bring that bitch here, I have enough stress going on without her lack of bedside manner to make it worse.” The two minions stared at the sudden transformation from my happy cloudy self, to the alert demon before them now. I tell them she tried the put a psych hold on me the last time I saw her and I don’t want her near me in my present state. I will wait til Dr. K returns. I thank them for their time and they leave, and that is the last I hear from gynecological oncology during my stay.

Around 3pm, I head to radiology for the nephrostemy. They give me some meds to relax me, and some local anesthesia in my back. Neither eliminates the stress of what’s about to happen, the pain or the anxiety. I am lying face down on the table while they drill in my back to get to my kidney. After a few false starts, they hit the bonanza, simultaneously finding the only spot in my back that is not anesthetized Screaming commences as they try to get the pain under control; the pain subsides, but I am shaking so hard from the pain I can’t keep still. Somehow they manage to get the tube in and I am eventually returned to recovery. More pain meds follow.

Andy and Tom and my friend Ashley who left me to work for the Governor’s Office all come to visit me. I finally have a phone and a phone number and Erica and Paige call me to talk to me and it between my visitors and callers I feel pretty good and have not had any time to focus on the fact that in less than 24 hours, I have gone from happy-go-lucky cancer girl, to girl-with-a-tube-in-her-kidney-with-a-fucking-giant-cyst-that-is-causing-complications-forever. After everyone leaves, I nibble the snacks Andy and Tom brought and enjoy the flowers that Ashley graciously shared with me. I watch TV. I find that new pee bag became unplugged from its hose and soaked me and the bed. We wash, change and I get back into bed. More pain meds. Dr. R from urology comes by to say he’d like to remove the catheter as he doesn’t want me to have to go home with it. He says they will take it out at 1 am, and if all goes well, I’ll go home in the morning. I get some dinner, a delicious meatloaf and mashed potatoes and fresh green beans. No jello, but a delightful lemon sherbet. When 1 am rolls around, they finally remove the catheter from me. Liberation. I can finally get out of bed, and discover that my bag leaked again. I am not thrilled. Then I discover when the nurse’s aide pinned the bag to my gown the last time she changed it, she put the pin directly through the bag, and not where the pin can safely go. Now we need a new bag. We get things in order, I get to use the bathroom and actually tinkle on my own in one of those awesome “hats” and I try to get comfortable enough to sleep. I now have the IV in the back of my hand (location 3) it’s hard to find a position in which I am not kinking something up or cutting something off or being speared in the kidney by a hose. It’s a fucking circus.

Nancy, the nurse’s assistant or patient care aide I think is what she’s called, is a talker. I had her care for me back in December when I had the laparoscopy. One son is a genius, and is an aerospace engineer with no common sense, who now wants to be a lawyer, and her other son, well he’s just normal. Her husband had his arm torn off and reattached and when he’s grumpy, he makes her grumpy. She has a migraine but what can you do, you have to come for work. She cannot get over the beauty of the sunflowers from Ashley’s yard. She’s never seen anything like them. She’s loud and funny and talks non-stop, which isn’t helping with the sleep. I tell her I would like her to take the flowers when she leaves, and enjoy them, and she is overjoyed and begins to tell me how she is going to dry them and get the seeds so she can plant them in her garden next year. I finally fall asleep for an hour or so, and then the early rounds start – the urology minions first, then the radiology team. I am free to go, once I can get Andy to answer his phone. Andy also has to be here to learn how to clean my tube daily and to change the dressing – they offered to show me how to do it, but um, yeah, it’s on my BACK, and I am not an octopus with multiple arms nor am I an owl who can turn my head to see my back. I eat my breakfast and wait. I put the clothes on that Andy sent down with Lori. His picks were from the “these clothes are being thrown away” pile, so I put on the shorts with no elastic and decide to wear the shirt I came in with instead of the too small one Andy packed. Finally, sleepy head gets there and we learn wound care and off we go.

I get home, feel pretty good for having an hole in my back. I sleep most of the day away, until 11pm, when the no peeing thing starts all over again. Long story short, it was a horrible horrible night. I tell Andy I need to go to the ER, and I pack extra clothes and a seat cover in case of accidents and off we go. About ½ way there, my bladder lets go with no warning. Good call on the seat cover. I tell Andy to take the back way to Hershey because there’s a portapotty at one of the trail entrances on the state game lands. We get there and to my surprise, it’s been upgraded to a real national park bathroom. As gross as a portapotty but larger. I change and we resume our journey. Unfortunately I also have another bladder eruption as we are turning into the driveway for the ER. How can there be so much pee! Andy has to go get a wheelchair and bring me in that way again.

You would think the fun was almost over here wouldn’t you??? I would. I have to give an urine sample. I try to do it in the bathroom, and squeeze out a little. I go back to the exam room, and guess what? Bladder eruption, but this time I am on one of those pads, so it’s all good. While waiting for urology and the er docs to come by I discover that I can pee, but only if I am sitting on a fucking diaper on a flat chair, because it pushes the cyst back up into my body and lets the urethra do its thing. When I try to use the toilet, it rolls down like fucking boulder and shuts everything off. I share my discovery with the Dr. who says it sounds reasonable but not a long term solution so guess who’s getting another catheter. It is at this time I learn that the reason I had such discomfort with the last one was because they used a latex catheter and uh, yeah, I am fucking allergic to latex. Nurse Sara tries her best to gently insert this one, being herself a vagina owner, and knowing how brutally uncomfortable this is. She can’t get it in; Urology is called, and they will come do it. Two doctors arrive, and no matter how hard they are trying to be gentle, they don’t own a vagina, so they have no idea how ridiculously painful this whole process is. Finally it’s in, and my bladder starts to empty. Despite the number of times I managed to empty my bladder using the chair method, it’s still pretty full. They are going to do one more urine analysis and then I can go home. Andy has already left for work, and my beloved Paige and baby Kenny have agreed to come get me. They tell me I will have the catheter in for a week or so – then they will take it out and see if I can just intermittently catheterize myself on my own daily instead of having the giant pee snake invading my vagina. They will call me with an appointment. Nurse Sara comes in to show me how to take care of this set of tubes on my own and then shows me that I also get a snazzy “daytime bag” that I can strap to my leg when I want to go out and about. OOOh, a fancy pee bag accessory – IT’S A FUCKING PEE BAG – not a clutch. I laugh because I doubt that I’ll be all that concerned about the size and shape of bag when there’s a fucking gigantic garden house dangling between my legs. Sara leaves me to the business of figuring out how to dress to accommodate the gargantuan hose and bag. When Paige lets me know she’s close, I ask Sara if I can leave, and she gives me the okay…at this point I couldn’t bear another minute after listening to the dude in the next room grunt for two hours while someone else kept their finger on the call button almost the whole time I was there. I’m outtie.

Not so fast, says the Drop Dead Fred look-a-like at check out. You must check out. I tell DDF, no, I don’t, I was dismissed by the ER. Yes, yes, you do says DDF. He demands my checkout papers. I don’t have any DDF, I tell him. DDF asks if I have any papers from the ER, I say yes, and he demands I turn them over. So I slam my pee bag on his desk, and open my backpack and hand him the papers. DDF peruses them and says, um, yeah, you don’t have to check out. I grab my pee bag and leave in a huff.

I keep falling asleep on the way home, because I am exhausted. Paige and I hit Wendy’s because the last thing I ate I can’t remember. When I get home, pop a muscle relaxer, have some herbal meds, empty the pee bags and pass out in sweet sleep. When I wake up in four hours, the pee bags must again be emptied, as they fill quickly when you sleep.

I’ve since named the pee bags. Tweedle Dee and Tweedle Fucking Dumber. I carry the big one around in my backpack, the little one’s pinned to my side. There’s no getting comfortable, only being able to tolerate the positions. It still feels like having to pee all the time. Like there a rock stuck in my vagina on the end of stick. And while I am grateful for being able to sleep for more than 1 hour at a time, I still have to get up and drain them at least twice a night.

This is my new reality, and why I am so angry. Like I told my nurses, I knew something like this would be down the road, I am not a pollyfuckinganna. I just wanted those last two months, the two months when I could feel like a normal human, not a fucking cancerous blob, who will just sit in bed and wait to die. I wanted quality over quantity. This is not quality. This is a nightmarish hellscape that I am not waking up from. Yes, it could be worse, which is easy to say when you aren’t the one with the pee bags. I know it could be worse, and I am grateful that it’s not. But today when the Urology dept called for my follow-up and said my appointment to determine if they would remove the catheter would be September 14th, that was the last straw. No Riot Fest. No Whoopie Pie Festival. No more swimming. No more baths, no more hot tubs. Just fucking days of emptying and cleaning pee bags, self medicating and sleeping because there’s not much else I can do. I can’t even go to the beach because SAND. I am not happy. I am not.

So before you try and turn my frown upside down, please understand I need to be angry, I need to be able to feel sorry for myself. I need to say that cancer sucks, and it’s a horrible insidious disease, and that I have every right to be upset that my life is completely different today that it was last week. I don’t know what I did in a past life to deserve this, but when I look back on everything I’ve gone through in my life, I kinda feel I’ve been cheated a little. This will pass in a few days I know, but for now I don’t want to talk anymore about it, or pretend my world is a happy fairyland where unicorns play candyland with talking bears. I am grateful for all of the concern, and love, and caring, and well wishes, and prayers, I truly, profoundly am, but I am still coming to terms with what is reality.

And with that my friends, I am going to go have a nice shower with TD1 and TFD2. Good times. I’ll be back to my normal self eventually.


No Bueno II – Return to Oncology Hall

Calvin-gets-existential

Go get your tissues, cuz it’s gonna be sad. Sorry. I really didn’t want to write this tonight, but my brain won’t let me sleep despite all my efforts to turn it off until this is in black and white on my screen.

Today was doctor day, in the new offices in the Cancer Institute. Heidi came to pick me up and take me to the dr. Andy wanted to know if he should come, but I told him no, he didn’t need to stay up all day and just get cranky waiting and get no sleep. The news would be the same whether he was there or not. We got there kind of early, and then waited about an hour after my appointment time before I was called. By that time, my “relaxation” medication had worn off, so I was clear and lucid for the visit. Damn.

There were an alarming number of cranky people in the waiting area. It’s not like the Hope drive office, where all the patients were women. My dr.’s new clinic is in the same area as the infusion suites and the labs in the cancer institute. It really only makes sense because he’s not just the gynecological oncologist but the surgeon, and the Hope drive offices were alll the way across the hospital campus from the hospital and the Cancer Institute. But it’s change, and change is uncomfortable. And there were really sick people there. And people who just wanted to get blood drawn. In my head, I am trying to guess the type of cancer that has attacked them. I see some women in wheelchairs and on scooters, and not just for fun, but because they need them, and I think…I don’t want this to be me.

When they call me, the nurse takes Heidi and I back to an exam room. At least she didn’t ask me when my last period was. She uses the medieval torture device of an automated blood pressure machine to take my blood pressure which registers at a scary 150/110 or something. Not normal and not good. I’m feeling fine, so I blame the machine. Those machines always get it wrong. Now, the scale on the other hand, it got it right. Even better than right, because after slurping down a pint of Ben and Jerry’s and tortellini sandwiches and chips and peanut butter m&ms and Chinese food and Taco Bell the last few days, my weight was actually down, instead of up. I am friends with this scale. After the nurse, in comes a minion. Very nice minion, but very tired. I tell her my story, I tell her I’ve seen the scan, I know it’s bad, and I want to stop taking tamoxifen because I hate hot flashes. I also tell her to tell Dr. K no chemo until November if that’s the option. She asks me if I get nauseous to which I respond, no, I smoke weed, there is no nausea. She laughs at my forthrightness. I tell her Dr. K knows, he just doesn’t put it in the medical record. We review meds, blah blah blah.

And in comes Dr. K. Wellm he actually tried to kick the door in, claiming he tripped, as he was coming in. I ask him how bad it is, and then it gets all kind of  surreal. I can see on his face, no bueno. He says it’s larger; I say I know. He reads the report to me, which if I read once, then I’ve read 1000 times since last Monday. I get the feeling he didn’t really look at it closely before I got here. I can understand that when you see 22 patients in 3 hours, sometimes you aren’t as prepared. He’s really bummed, he says he feels like the grim reaper. I tell him I know it’s bad, but like, what are we talking here? I asked if they could drain the cyst again because it’s bigger than ever, and while it’s not causing me more than a 5 on the pain scale, it’s uncomfortable, like an alien baby. Or hey, a pufferfish. He said they can’t do it in radiology again because inserting a needle in to the cancer ball would create the opportunity to spread cells as they pull it out. I can see he’s struggling with this, and I feel bad – I don’t want my doctor to feel so horrible about this. He says he’ll make a referral to urology and see if they can insert a stent. Then we talk a little about options, I tell him I’m down to do chemo again but not until November. I have too much to do in the next two months. He’s okay with that. He wants me back in a month and he’ll come up with a plan. Maybe a trial. Heidi asks him some questions about chemo and stuff, and he says that we can try some other flavor of chemo since the last one didn’t work. I am just happy that he said to stop taking that fucking tamoxifen.

There was no avoiding asking the big question though, and I asked him about time, and how much I have left…he didn’t want to say. He said I would make the OWTH show in September. I said good, but how long, ball park, and again he hesitated and I said I just want to know if I am going to have another summer. I’d like another summer. And bless him, Dr. K. said I think I can get you another summer. And then he hugged me hard. Like really hard. Like the kind of hard that says I wish I could have done something to keep this from happening to you. I like having a Dr. who cares.

I see the urologist next Tuesday. They are filling out FMLA paperwork for Andy and I. I see the Dr. again on September 21st. I was super proud of myself for keeping it together during this visit. I joked. I tried to scoff at the spectre of death. My voice only got wavery once. I checked out without tears, and with another prescription for oxycodone. I even kept it together having a drink with Heidi, and at dinner and the ride home. I almost kept it together when Andy came to unlock the door. Until I had to say “he thinks he can get me another summer/” That’s when I lost it. I couldn’t look him in the eyes. No one should ever have to tell their child that they aren’t going to be around much longer. And every unseen milestone keeps running through my head. I can’t even write about that because it breaks my heart and tears up my stomach. If I have one regret in this life, it will be not be around to see him live his life.

Then the texts – maybe I should call people, I guess, but I don’t want to be all sobby on the phone. Crying isn’t going to change it or cry the cancer out. Mike and Amy and Alan know. They’re the only people in my family who need to know this right now. My dad will be 87 this year, I don’t need him to die of worry about this; he already spends too much time stressing about my sister and her drunken idiocy. And while I am very public about this disease and my life and shit in general, I reserve the right to be the one who speaks for me. I don’t want my siblings to share this with people I don’t know so that people are stopping me on the street. Or asking my friends.

And now it’s blogosphere official. The stupid psychic was wrong about this one…unless something magical happens. I need to get on that passport thing with my next paycheck and start saving for that trip to Ireland. I’ve also got to start getting rid of a lot of things. Physically and mentally. Am I scared? Yep. Will I get through this? There’s no question, good or bad. Even with everything that is uncertain right now, I feel weirdly peaceful that the other shoe had dropped. Weird I suppose.

Anyway, I was a bit peevish yesterday until I got kind of fuzzy and was distracted by a puzzle and did most of an entry about what you should and shouldn’t say to someone with cancer, but it was a touch bitter. Here’s the gist of it, without all of the snark:

  • Please don’t ask me how I am unless you have the time and desire to listen. Most times I will say “fine” because I know you are just being polite and I don’t want to burden you, but sometime, I may feel I need to talk about how I really feel. So, if you don’t really want to hear about how I am, just tell me I look good today, or Happy Wednesday.
  • Don’t get all weird when I make death jokes or talk about dying. If you are my friend, you know I have always been a touch far on the dark side. I only have two choices for how I will deal with this fucking puffermonster: laugh about it or cry about it. Laughing feels better and doesn’t require tissues, so expect me to joke about it. Don’t tell me we need to talk about happier things – this is my reality and I need to talk about it or joke about it now and again. Otherwise this giant dead elephant is in the room. (see what I did there?)
  • Don’t worry about having the right words to say or even saying anything. And don’t try to be positive about it all the time because cancer sucks, and while I try to stay positive, there are days I am very angry at my body and this c-monster. It’s okay to say it sucks to me. And if you can’t find the words, a hug, or a smile, or a fist bump will do. And you don’t need to be sorry. You didn’t cause this. I have a theory about who did cause it but they’re dead now, so it’s not like I can exact revenge. But don’t let our paths cross in the next life. I want every day from here on out to be about laughter and fun. Fun which will involve death jokes.

Finally, I know this is why you all stuck around…there’s an Indian Restaurant in Hershey that opened up on Fishburn Rd called Khana Indian Bistro, and the food was fabulous!!! Very fresh and well prepared and reasonably priced. It’s BYOB, but you can bet that the new highlight of driving to Hershey for medical appointments will be take-out Indian food. If you down there, check them out. The green chili naan and lamb Xacuti were excellent. Service was great, very nice people. And there appeared to be other Indian people there as patrons, which is a good sign since they would be authorities on Indian food. So go there, or if you are in Hershey, text me and ask me what I want you to bring me for dinner. Ha ha.

It feels like typing this drained me, or the stress of today just subsided, or that last oxycodone and “medication” are working but I can barely keep my eyes open. I guess I’ll be writing more often to share the tales of my urology appointments, I know, I know, you can barely contain yourself. Thanks for reading and hey, feel free to use the comment section on the blog, I like to know who was here. Sleep tight muffins!!


Shit Just Got Real. (or Well, That’s Fucked)

I saw a dead porcupine the other day, near the center divider of the road, on my way home. You almost never see dead porcupines. I was tempted to go back and get some quills, but decided that it would not only be risky but also gross, and vetoed the plan.

And before we get to the meat of the story, the main event, the moment you have all been waiting for, I feel compelled to inform you that there are certain species of butterfly that subsist on the tears of turtles and alligators. I found the idea of drinking tears rather poetic. And as I was crying on and off most of yesterday and today, I was romanticizing the idea of beautiful butterflies landing on my eyes and drinking my tears. Then I remembered that butterflies are bugs, and bugs are creepy, and that I would appreciate butterflies more as they flutter about me, rather than dipping their proboscis in my eye sockets to suck away my tears. So much for that.

Yes, yes, the scans. You want to know about the scans. Well, I am comfortably medicated now that I can write about it without histrionic weeping. Can you be histrionic if you don’t have a uterus? I don’t know, but for the sake of good writing, let’s pretend we can. You’ll just have to wait while I tell the story of scan day, because there is a story, although it may not be my funniest adventure to the hospital, it was still a bit amusing.

To fully appreciate my day, first I’ll set the stage. The subee needed breaks for over a week. The car would make this horrible woosh, woosh, woosh sound when going forward, followed by a terrifying grinding sound that pulled at the hair at the back of your neck every time you had to brake. It was horrible – it was supposed to be fixed yesterday, but as usual, plans made with my family don’t always work out the right way. So I had to drive the sad subee to Hershey myself.

I was having my CT scan done in the main hospital instead of the CT center at Hope Drive near my dr. old offices. I won’t make that mistake again. At least I still had my “I have cancer” parking pass so I can get premium parking near the building. (I can also get free valet parking but I am too embarrassed by the metallic grinding and whirring of the subee to consider letting someone unused to the sounds of destruction drive her) Unlike the other CT scanner office, to get to this department, you have to walk walk walk walk all the way to the middle of the hospital and then go downstairs and walk some more, whereas the other is just inside the door. When finally I arrived, it was hardly busy, but I forgot we were in the hospital, and that hospital patients get first dibs on the meat slicers, and they only have 2. Which makes no sense, because there’s always people waiting for scans, so a third one would come in handy. I also forgot that in the radiology dept of the the main hospital, there’s no cell service. So I can’t answer all of the text messages I got that morning, even though now would be the perfect time to do so. Once I am checked in, I want to read my book, but dumb ass left her glasses in her purse in the car. My stomach’s been wigging out all night, but I don’t want to go to the bathroom because they will most certainly call me when I do. In the midst of this there’s a great commotion to get the Hoda and Kathie Lee show on because apparently Frank Gifford, Kathie Lee’s husband, had died, and it was an absolute priority of every senior citizen to get the dish. No cell service, no glasses, and depressing TV. This does not bode well.

Finally I am called and shepherded away to the slicers’ area. The nurse put an IV in. The IV itself was painless, but I don’t understand why I must be brutalized with tape??? I know you have to keep the IV in, but for dog’s sake, lighten up with the bandage. Once I am prepped, I go back to waiting. Wait wait wait. Then I get called and off I go to hop on the table. The nice nurse begins her questions, and I tell her I’m a bit of a pro at this, and no allergies, no diabetes, no kidney disease, blah blah blah. And then it’s strike two against getting a scan here again…NO STICKERS. The machine has no stickers. Not a pink bear, or pufferfish or Mufasa or nothing! What am I to look at while the machine scannerizes my insides? Sigh. The nurse explains it’s a brand new machine and they haven’t gotten any stickers yet, because it’s new. I tell her I am not sure I can do this without Woody and Buzz, but strong soldier that I am, I brave it. Slide slide slide, whirr whirr woosh, and I’m done. The nurse removes the IV and then bandages my arm with that cool self gripping tape I love but wraps so much of the tape so tightly around my arm, that I believe my circulation is cut off. And off I go.

I was dreading these scans. I barely slept the night before, and I wasn’t able to have anything to eat before the scan so I’m a bit shaky. Now they are over, and I just have to wait for the results. That should only take a few hours. I wrestle the tape and gauze from my arm to see that I will have several delightful bruises, Yay.

I did some grocery shopping, hung out with my friend Kelly and her boys, ate a donut, stopped to see Jenn and get some more quilts for clients at work, all the while, periodically checking for my results. Why are they not posted? This is making me nervous. Delays are never good, it means they need other people to confirm the results. Finally, about 3pm, the results are in. And I take a peek. And it’s no bueno. I was hoping that there’d be no change, or when I was being wildly optimistic, that the tumors had vanished. I knew that it wasn’t likely since my pain came back, and I could feel the bloating in my belly. But I had hoped.

I’m blogging about it because I’ve told the people who needed to be told. Once again, I am keeping the news from my dad, as well as brothers Leo and Stanley, because I don’t want them to upset pop. I sent a text to Mike and Alan. As for Janie, my “sister”, I doubt she even knew I had cancer the first time. If I am not sporting Andrew Jackson or Benjamin Franklin on my belly and you can use me to buy beer, she wouldn’t recognize me. Not that this causes me any trauma. I didn’t want to tell Andy because his birthday is today, and I knew that for the rest of his life, the day before his birthday was the day his mom told him the bad news. I didn’t want that, but I also couldn’t pretend that everything was ok, or crazier yet, wait until after his birthday for the results. I needed to know too, because if the news was going to be bad, I wanted to make sure I spent his birthday with him, because who knows if it will be the last time.

Oh right, I didn’t tell you want it says. Here’s the gist: pufferfish is now 12x12cm. A bit larger than a grapefruit and bigger than it’s ever been. The tumor on the interior has also grown. The tumor on the outside has shrunk. The cyst appears to be blocking a urether for one of my kidneys, and my bladder lining is thickened which is indicative of disease. There are also two brand new spots on my lungs, which appear be metastatic. Like I said no bueno. Three months of Tamoxifen may or may not have worked because the cancer is still there and starting to spread out in the neighborhood…did the Tamoxifen slow it down? Or did it do nothing? We’ll never know.

Naturally there was a lot of crying yesterday. I don’t see the Dr. until Monday, and I know that I am going to hear things I’d rather not, but it is what it is. I am no idiot, I know this is not positive in any way. It broke my heart to tell Andy, because that’s my only real regret, that it isn’t likely now that I will be here for the important moments in his future. I don’t know if I will ever see him graduate from college or get married (or not) or have grandbabies (or not.) I am scared for him. Like every mother I guess. That’s what made me cry so much. In addition to crying, I was able to acquire a more potent herbal medicine and that in combination with a few oxy turned my frown upside down, or rather, gave me shiny eyes and made me feel all floaty, and numb for a few hours. A very welcome numbness.

There are plusses I guess, I mean it probably means I’ll get to stop taking the tamoxifen, which seems to have done nothing but make me hot, pimply and nauseous for the last three months. And made my boobs swell, which is not a plus for me, simply an annoyance. It looks increasingly likely that I will get out of having to pay back those student loans. And that if I am going to Ireland, I’d better get on it.

Now you know. I’m really very tired, and also very medicated but I wanted this done so I don’t have to answer any questions right now. As I told Andy, whatever happens is going to be okay, because it’s what has to happen. There’s a fucking lesson here somewhere, or maybe this is just getting the crap out of the way so that in my next life I can assume the role of queen of the universe without any setbacks. Or be an alpaca. There’s a strange sense of peace in all of this – the anxiety of not knowing gone for now. At least I have a ton of people in my life who love and care for me, and in the end, isn’t that what matters.

So I’ll leave you with this…hug your people in your life. Hug them a lot. Hug your friends, and laugh.

And

I learned that courage was not the absence of fear, but the triumph over it. The brave man is not he who does not feel afraid, but he who conquers that fear.

Nelson Mandela


Beating Back the Blackness

So as I was shoving that third piece of pizza into the yawning chasm of my mouth, I finally gave in and accepted that I am sunk in blackness and I was stuffing my feelings. Also why I have put off writing for so long again. Because I’m a scaredy cat. Not like a cheetah or a lynx, but like a big ol’ cowardly lioness. And it’s paralyzing.

I promised myself that I would write first about the good things, because there have been a lot and when I look back at them, I feel like a whiner for feeling the way I do. Of course that doesn’t make my pain and weakness go away, or make it any less valid, but I am grateful for so much and for the people in my life, and I don’t say it enough. So let’s do this, and if I am not ready to pass out when I get through the good, then we’ll move on to the bad. If not, there’s always tomorrow.

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OWTH

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Silent Bell

So first there was the fabulous road trip to Minneapolis. Once again, Andy and I hit the road for punk rock adventure. Andy got me tickets to Dillinger Four’s 21 birthday 4th of July Show at the Triple Rock in Minneapolis. We drove straight from home to Minneapolis, speeding through the dark night through the states of Ohio, Indiana, and Illinois. Well, okay, it was getting a little light out as we drove through Chicago, but for the most part, dark Indiana, Illinois, and Ohio are similar to the daylight version. Wisconsin was pretty and has a curious number of large animal statues at different roadside shops and hotels. Like a giant moose. Or a giant mouse with cheese. There were more, but Andy wouldn’t pull over for everyone. Minnesota is also quite lovely. We hit the aquarium in the Mall of America, which was small but very cool, unlike the Mall of America, which is, though large, a mall. Okay, okay, it has an aquarium, and that Nickelodeon amusement park area, and a way cool lego store, but bottom line, its a mall, and the massive amount of people and the mindless consumerism reminded me of why I shop online. Of course, that was the first time during the trip my body betrayed me and we headed back to the hotel, which was fabulous. My sore sick body fell in love with the bed, and even more so after I swam for an hour in the pool. The next day, we went to the Minneapolis sculpture garden which was very cool. (Note to self: EARLY mornings and LATE afternoons are best to be outside when your body likes to randoIMAG2366mly overheat to 1000 degrees throughout the day.) They have a giant spoon with a cherry on it that’s a fountain, and a bell that doesn’t ring, for which Andy and I posited theories about what a silent bell represents before moving on to two sculptures which we both decided were representative of vaginas. Once again I had to retire to the hotel to rest before we could go to the D4th show. After a quick nap, we headed out to the Triple Rock. The show was amazing – albeit hot – and I hid behind a tree most of the time avoiding sun. Even cooler than the show was getting to meet Ranae and hang out with her at the show, not to mention that Ryan gave me an awesome gift of the vinyl Jesus and Mary Chain’s Darklands, which is my favorite record of all time. I also got to meet a bunch of great people and make fun of a selfie stick. After the show, Andy and I went back to the hotel to catch a quick nap before the after party, but Andy is a still a young pup and he fell asleep so I ended up going back to see The Underground Railroad to Candyland by myself, which was a big deal, since I never have gone to a club in a strange city by myself. I was glad I did, because they were amazing. Really, every band that played was excellent, we missed some of the openers, but thanks to seeing the line up posted on FB, we got there in plenty of time for OWTH. We also saw Toys That Kill, Dillinger Four, Lftr Pllr (the special guest whom I never heard before but were amazing) Scared of Chaka, Tim Barry and Against Me! It was just one of the best days ever, and after the show, I went back to the room and tried to trick Andy into letting me sleep in, but no, he was up and ready to head back at the crack of dawn. So with a stop at the cheese shop where we bought a ridiculous amount of snacks, we headed home, tired, bruised, but happy happy happy. And Andy and I had only two screaming matches at each other during the whole trip – once at 5am when I needed to pee and couldn’t find a bathroom and the second when we were stuck in traffic in Chicago for 2.5 hours because of those damn hippies at the Grateful Dead thing going on there. Still, it was a fantastically fun weekend and I am so glad we did it. Plus spending the time talking with Andy always is worth it. And Andy got a ton of fireworks that could not be purchased here, so he was very happy too.

Then I got to see two of my oldest and dearest friends, Donna and Denise, who were in town for a wedding. It was 15 years since I’d seen either of them, and it was like we never had been separated. We drank and laughed and looked at photos to point out all the people we knew who were dead. I also got to see all of the kids, which was great. Then we also got together for breakfast which was another laugh riot. It would have been complete if our friend Anne could have joined us, but she had an event that she needed to prep for, so hopefully another time. Nevertheless, we had a blast and we need to not wait so long to hang out the next time.

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me, Denise and Donna

After that, my friend and former common law domestic partner, Debbie, her husband, kids, and her parents, brothers, sister in law, and niece and nephew came to Hershey to meet Andy and I to hit Chocolate World and get some dinner. I hadn’t seen Debbie since Andy’s graduation, and I hadn’t seen her family since Andy was 10. It was a day of great hugs, great laughs, and fun. The girls, Tyler and Kylie, are gorgeous and I adore them. And again, it was like the miles and the years between us just disappeared, I only wish we had had more time to just hang and talk, but I’ll find my way home to the west coast eventually.

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me and Deb

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Jenn, Kellie, Sue, Heidi and moi

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Komodo Dragon

Then was my surprise trip to DC with my friends from work. We left early Saturday and got to DC around noon. After a fun drive with mimosas and my breakfast of brownie, we parked and headed off the Natural History Museum. Now, you may or may not know that the National Mall is under construction which means if you want to get to something on the opposite side you must walk ALL THE WAY AROUND. Now, had I known this I would not have worn my black OWTH shirt and would have applied sunscreen, but I trudged through the heat (and it was fucking hot) darting under shade trees as we traveled along. We paused for rest and put our feet in the fountain on the mall, which was enjoyable until you realized how warm the water was. I saw my favorite strange bunny sculpture,  but my phone dieIMAG2453d so there are no pictures. We checked out the museum, which was crowded but fun, and then took a pedicab back to the hotel which was ultra fun, as I waved, queen-like, to the masses as we traveled. The guy who pedaled our cab was interesting and it made a great way to get back to the hotel. The hotel was very cool, and I had my own room, with another one of those comfy beds. When we got back, we grabbed some drinks and headed up to the rooftop pool, and I got kicked multiple times by a rambunctious child without parental supervision. My leg buckled under me after getting out of the pool, and I had a major cramp, but it went away, and and after a nap, I had a brownie and we headed out to the dinner cruise on the Potomac. Our cab driver was an idiot and it took us twice as long to get there as it would have if we walked, but I couldn’t handle anymore walking. The cruise was very nice, the food was awesome, and I ended up hanging out with Jenn on the observation deck most of the night, just enjoying the night air, the lights on the shore and sailing. Unfortunately there was non-stop “cool jazz” playing and it was making my eyes bleed by the end of the night. After the cruise, we’d planned to go to the hotel bar, but once I got to my room, I was cooked. The next morning we got up and headed out to the National Zoo where we rented me a scooter and began the zoo adventure. Unfortunately, the red pandas were unavailable, and the elephants under quarantine, but the Komodo dragon poked his head out when I got to his enclosure. We got to see some special “double turtles” (see photo) and vultures. I tried to race a cop who was on a segway, realizing after I IMAG2478dared him that I had had a brownie for breakfast and probably shouldn’t have been driving a scooter at all, not to mention racing cops. There were three lazy pandas there though and that was pretty awesome. We made it through the zoo by noon before it got REALLY hot (it was already blazing by then, and not even mid-day). After the zoo, we were all really tired, and headed back home. We stopped to get some fabulous Thai takeout and have lunch at Quaker Steak and Lube, which none of us had been too, and now having been, really have no desire to go again. Tired, and full we finally made it home. It was very fun, and I am jusIMAG2573t glad none of us were arrested. What was even moIMAG2466re special about this trip was that ALL my coworkers contributed to it – they had a pot luck luncheon where we all paid $5 for lunch and we brought a dish, and then the next day, we had a reduced lunch for $3 – which was actually a fundraiser to raise money to do something fun for me. I know I’ve said it before, but I can’t say it enough, I work with the best people – our job may suck, we may bitch and moan, but my friends at work have the most generous hearts, and the fact that they did this for me made the trip even more special – I only hope I can return the kindness for others later. Needless to say, after the trip, my body decided I needed to stay home with crampy legs and nausea, but it was well worth it.

And that brings us today. All that goodness took the edge off the gloom that’s clinging to me. I expect I will write more over the next two weeks as I stress about my upcoming CT scan and Dr. appt. I am bummed that my CT scan is the day before Andy’s birthday, and I am going to try not to read the results until the day after, but let’s be realistic, I’m gonna be hitting refresh until the scan is posted on my online med portal. The next couple months will be busy too, we’re planning to go to Riot Fest, and then I have OWTH tickets for September in Philly and Baltimore, and we got Bouncing Soul tickets in October, and if I can manage it financially, and physically, I want to go to Fest in October too. I’ve been putting these things off for years and I need to do it now or it may never happen, especially since I think there may be chemo ahead and the pain that was my constant companion last year, has returned and PA is still lagging on the medical marijuana bill. Sigh. Call your local representative.

But before I go, I strongly encourage you, if you are a fan of OWTH, or Bad Religion, or good music in general, to go to Ryan’s Anxious and Angry web store and buy something so you can get the free flexi of OWTH covering Bad Religion’s Sorrow. It’s amazing. Just buy something from Ryan even if you don’t want the flexi, because he’s a good guy and is super generous, and is always willing to help people out. And because his cat Stray Charles is blind. Or don’t buy anything and just make a donation to suppor the podcast. And listen to his podcast, which is very interesting if you like punk rock and mental health issues, and has helped a lot of people dealing with mental health concerns know they are not alone. Really, it’s worth the listen. And now it’s time for bathroom trip 5 tonight and then try and sleep. Let’s hope it comes quickly. Sweetest dreams, my dahlings!


Some Days Suck

It’s been a while my friends.

I probably should have done this last night when I couldn’t sleep. As usual of late, I always have good intentions to write more frequently, and then I come home and I’m nauseated or in pain or just so tired, that I say “I’ll do it later” and either medicate myself into oblivion, or fall asleep. So, sorry.

Edit: I was in a bad place writing this, but like I’ve said before, this blog is for me rather than anyone reading it, and I have to be honest about what is in my head, for my own sake. So don’t get all weird on me.

And I should write more. Instead of letting shit fester and boil and then find myself driving along the Burma road bursting into tears because I didn’t get to pick huckleberries with my son this year, and I don’t know if there will be a next year. Full fucking meltdown. Followed by another after I pulled my shit together and kept my appointment, and headed home. I am a mess today. Probably because I couldn’t sleep last night and I am just that much more tired than I have been lately.

That’s the fucking thing about having cancer. I don’t look like that little beast inside me is doing any damage. I’m still fat. Cancer twice and I am still the size of fucking heifer. Another 50 pounds would have been great…

PAUSE

I am about to begin a very negative bit here about everything that sucks about having cancer. Or that I can think of. So leave now, because I don’t want pity later. I am so entitled to this rant because it’s less than a month until my scans and dr appointment. It’s just gonna say what I already know (and am daily terrified about) – that pufferfish grew some more. I’m starting to have real pain again, and I can feel the increasing pressure As if the resurgence of pain wasn’t a gift on its own, the Tamoxifen makes me have hot flashes throughout the day, or want to puke, or makes me cold. My toes are periodically numb. Or sometimes they feel like someone is hammering razor blades into my toes. My days are about sleeping or thinking about sleeping. I am scared. Terrified even. And again, not of dying, because that’s not what frightens me. What frightens me is when Andy asks what is going to happen next and I can’t answer him, and I think about just ending it now, before it gets worse, because it isn’t fair to him. Don’t get all twisted, I’m not making plans, but if I am gonna be true to myself, I need to say what’s real, and not some pretty fairy tale that makes a good read. I’m typing through the tears, because it’s a day where I can’t just force rainbows and unicorns out my ass.

I spend a lot of time trying to stay positive. And I normally am. But I can’t pretend that cancer is not the omnipresent force in my life. I get up to walk, I feel it; I sit, I feel it; I try to sleep, it’s there. It’s in my waking thoughts and in my nightmares. I think about clinical trials and what I will hear at my next appointment. The only time I don’t think about it as much is when I find the perfect balance of medication to bring me bliss. And it’s not happening today – I am waiting for prescription in the mail, and my natural medication is just not as effective as usual, so I am a moody, whiny, blob.

I’ve decided to stop here. I have good things I want to write about, and I will either later or tomorrow. I feel like I’ve purged some of the icky and actually feel tired, and want to sleep. Be well, and I’ll be back.

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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

lotus_om_mandala_by_lilyas-d7fsjh0


Pufferfish’s Evil Return

Well, well, well.

I noticed from the upswing in hits on the blog that people have been anxiously awaiting this blog entry. It’s certainly not one I wanted to write, and it took a few days for me to get my head around the news from the Dr. and actually sit down and write. Mostly I have just been lying in bed, super-high on narcotics and whatever else is lying around, trying to pretend that none of this is happening. Do you think just once, my body and mind could cooperate? Just once, for a few blissful hours of mind and body numbing peace. No fucking way.

First, I couldn’t get numb enough. And believe me I tried. But then things kicked in and I was all sorta fuzzy warm and mellow and just kinda caught in that sweet spot between sleep and awake where you can just lie there and not care. Until the pain started. Then I had to revisit my dear narcotic friends, and a few Advil just for good measure. Next thing you knew, I was asleep. Well, for two hours anyway, because my increasingly smaller bladder had me up stumbling to the bathroom every two hours, as in the new normal in this house. And of course, I need to drink a lot of water, so that fun never stops. But here we are, Sunday morning, almost noon, and I am enjoying the bitter turmeric tea and encouraging it to kill cancer cells as I type.

I suppose I should reveal the news from the Dr. I have already had to text or tell a bunch of people, and first let me say, the words I hate to hear are “I’m sorry” – I know you are, you don’t have to say it. I also hate the sad look. So, if you can spare me any of that, it would be awesome. I am not going anywhere yet, unless the Tamoxifen gives me a heart attack or embolism. I’ll reveal the full prognosis after I set the stage, because even though the moments are etched forever in my brain, they aren’t stuck in yours yet.

So Heidi and I head off to Hershey that morning, bright and chipper. Okay, maybe the chipper part is an exaggeration, since I already viewed the CT scan report online, Friday night, after it was posted. I already knew one of the tumors had shrunken significantly, and that my bladder lining had thickened. I also knew that that fucking pufferfish was living, larger than ever, in the dark vastness of my uterine cavity. Inside of it was no longer a clear or murky liquid, but evil nodules of the deadliest kind (which they might not be, but in my mind, I’d already given the diagnosis). These were new and growing nodules. Evil bits that plague the pufferfish. However, despite the new larger size of the pufferfish, it was not causing me any real pain, that is to say, there was some achiness that I had attributed to just being lazy, but that I now knew to be pressure from the beast. It was not the relentless traumatic pain that I had before that warranted morphine just in order to function. In fact, I could get away most days without any medication at all.

Despite the two young deer that decided that crossing Interstate 81 was a good choice at 9:15 am, we arrived early at the appointment – and of course the waiting room was crowded, but not as crowded as it had been in the past. Of course, I was anxious, but I had kept deluding myself with the thoughts that Dr. K would just tell me it was nothing, put me on hormones, and send me on my way for three months. I was busy checking my facebook between talking to Heidi, or playing Red Herring and thinking “why didn’t I make that neato sign that says “I’m in remission”?” so I could take a selfie later. Then I was called. Well first they called for Diana, and ended up with the wrong person, then they realized their error and came back for me. And it was actually early for my appointment. Omen 1.

Well I went back alone, and was weighed and measured. When I looked at the scale, it looked like I gained three pounds, which was annoying, but turns out, I lost five. It’s hard to read upside down. I went in to the exam room with my nurse, and we did the blood pressure thing and reviewed my meds, and I gave a two for my pain level, and then this unfamiliar nurse left me and told me Dr. K would be in soon. And I waited. And waited. And waited. I heard and saw medical students wandering about, so I knew it was a minion day. This might take a bit.

And I waited. After 45 minutes, there was knock on the door. In came a young woman, who let me know she was a chief resident. She had a copy of my CT report, and asked me the usual minion questions. I told her I had already reviewed my report on line, and compared it to previous reports and she asked me what I thought. I told her I was pleased that one tumor had shrunk, but I was concerned about the other information. She smiled and said the tumor shrinking is good news, right? I agreed, and then she excused herself and told me they would be right back in a few minutes.

And I waited. By this time, I have concluded that this visit is going to have bad news. I never wait this long to see the Dr. It’s almost an hour. Dr. K has a southern drawl. I hear him going in and out of exam rooms, but never mine. My treatment coordinator, Anne, has not arrived to hug me. Something’s up. It’s not the usual laugh riot that my trip to the Dr. usually is. Even though I consciously want to explain away the delay, I know that the last time I had to wait this long, it was not good news at all. Nope. My gut knows this is bad. Omen 2.

Still waiting. The chief minion pokes her head in and says it will be just a few more minutes, smiles and exits. I hear Dr. K in the room next to me talking to the posse. I can’t hear what he is saying, but I am texting Heidi to tell her this is not good and I am still waiting. Then I hear him in the hall, telling someone to go find Anne and tell her he needs her. Then he says, tell her I’m in here, I am going in. And in comes Dr. K, at 11:45ish, with his somber face on. I notice this and say “hey, you have your somber face on,” and he sits down. It is never good when he sits down right away. Omen 3.

He whips out that CT report and begins. He says, well you already saw this, but I’m going over it. I say of course, I saw it, but my medical degree from google and web md are not helping me understand it. He says well the one tumor outside is significantly smaller. I nod. Then he says, but your cyst is back, and bigger, and again I nod. He says that this is not good. The chemo did nothing to the murky death cells in the cyst. They even grew. This is not good at all. We do not want murky death cell growth. He tells me that recurrent endometrial cancer is very bad, and I remind him I have used google and know this. He says that the only thing we can do now is try to stop the cyst from growing and/or keeping cancer from spreading. I nod, I’m on board for this. He sighs.

Anne arrived and she has a serious face on too. The chief minion in the chair aside me is silent. Dr. K says we can try another series of chemo, he can put me on a chemo pill, or we can do nothing. Ruling out “do nothing” as an option, I ask him what he thinks I should do, since he is the professional. and has a degree in medicine from a school and not web md, and he says that I have had a rough round of chemo and I should take the pill for three months, and enjoy my summer. Then he throws out “I am not going to bullshit you, if this things grows or spreads, this cancer is going to kill you.” Bottom line. He can’t give me a time frame or an idea of progression, but I know Dr. K long enough now that he wouldn’t be telling me this if it wasn’t a likely outcome. He then reminds me that I am not a candidate for surgery because of where and how this thing is situated and that even if I was, that again, he would have to remove my bladder, rectum, and as a new added bonus, my vagina. No, that is not anything we’d be considering anyway. Quality of life over quantity. I have done an amazing job keeping it together through all this, even making a few jokes. I ask for more oxycodone, while everyone scurries for my prescriptions and to write orders for CT scans in three months. Dr. K reminds me that I WILL be able to go see OWTH in September if they play in Philly. The grandchildren thing is still not something he can guarantee me, and frankly, it’s probably not likely.

Then he hugs me. I want to break down sobbing but I assure him I’ll be ok. Anne hugs me. I am in a state of shock, I think, and then I cry a little. I don’t want to go to check-out sobbing, because I will scare the other patients. I am choking it back. I am saying all the things that other people will say to me over the next few days in my head, there’s always miracles, get a second opinion, be positive – you know, all the shit that people say when they are trying to make you feel better. I let Heidi know I’m out and then I go to check out and stuff my bag with tissues, because the breakdown is coming.

I successfully hold it together until I get to Heidi’s car. Then I tell her my prognosis, and cry a little. Then we go to lunch. At Houlihan’s. I have two hard cherry lemonades. I am relaxed. I can deal with this, but I am devastated that I will have to tell Andy. I don’t want to ruin his future plans and make him feel like he has to put his life on hold while I wait for cancer to finish me off. I don’t want him to have to be without his mom. I don’t want to have to tell him.

For the record, I have told brother’s Michael and Alan that I am on Tamoxifen for three months, and that we will see what happens when we have CT scans in August. I didn’t tell them the endometrial cancer will likely kill me part. I am sure someone I have told or that reads this blog will spill the beans, but I couldn’t. I am also not telling my dad or my other brothers. I am sure again, that someone will tell them even though I DO NOT want them to know. I couldn’t not blog about it, because frankly I am tired of telling people and facing the sad face and hearing words that do nothing to make either of us feel better.

So for right now, I am in limbo. Knowing the history of this pufferfish and its habits, it’s more likely to keep growing than not. I am taking Tamoxifen twice a day, and hoping it helps. I am drinking turmeric tea and trying to eat better. I am chanting for healing. I am visualizing the pufferfish drying up and vanishing, but I also know better than to dismiss the likely reality. As I’ve pointed out to many of my friends, there are advantages. I’ll be able to get a prescription for medical marijuana when the law passes here in PA, and I will probably never have to pay back my student loans. One of the possible side effects of the Tamoxifen is that I may lose weight (I could also gain it, or die of an embolism, heart attack or stroke). So who knows?

Strangely enough, I am also okay with this. Knowing beats waiting for the other shoe to drop. And I can finally go get that new tattoo and get my ears pierced so I can get big gold hoops that say “sexy” and “baby” to rock with my bald ostrich head. And I only need to get through 2.5 months before my next CT scan before I know if the tamoxifen had any effect. Oh, and I get to return to work full-time on June 8th. Woo hoo. I probably could have had my Dr. write me off for the whole summer if I asked, but hell, I am tired of not getting a paycheck and having to rely on Andy for money. So we’ll see how this all works out.

That my friends, it the story. Now I’m off to make some lunch, or take a nap, or something. Enjoy your Sunday afternoon. Peace out.

PS. I have this goal of reading 1000 books before I die. I am on number 2. However, it’s heavy on feminist theory, so it could be a while. But you should be happy because it’s about feminism and you know how I love that. Just wait.

BTW, if you like this or any of my entries, hit the ol’ like button on this page. Maybe more people will read it then. And it gives me a happy star when someone likes my entry. It’s the little things, folks.

hilarious_grim_reaper_gag_by_ATLbladerunner


I Am Mad as Hell (So I Am Gonna Blog About It)

Unfortunately, I am curious. Some might say fortunately, but no, curiosity is curse for someone like me.

Why, you ask? Because I like to learn things. I read articles, watch “educational programs,” (and yes, my fair share of reality TV, including some Real Housewives and yes, Dance Moms, but only to increase my knowledge of pop culture, haha), I have recently added to my bucket list (note to self: find out the origins of “bucket list”) the task of reading 1000 books before I die (and with my current medical issues, this may be a more gargantuan task than normal). I love to listen to stories of people who have lived lives different from mine. I like to learn about opposing opinions when people can articulate them well, rather than resorting to what they learned from talking points. I like knowledge. But when I learn things, I get angry. And things I learned today made me super angry.

Before we go there, I will tell you a little story. I once had to read a fairly boring and dry book by and about some historical figure in graduate school. I had to be the person who presented the book and led the class discussion, but I stopped reading the book around page 400 of a 500+ page book because it was redundant and narcissistic (not unlike my blog in that respect) and it was unlikely that anything the author said in those last 100 or so pages was any different than anything he had not already said repeatedly in the first 400. I believe it was called The Education of Henry Adams – supposedly a book from the American Studies “canon”. This was the book that showed me that cemeteries are great places to read, because you have no distractions.*(see footnote) I believe the general premise was that Mr. Adams had the best education ever and every educational system that was not like his own personal experience sucked, and that he was the best educated person he knew. Anyway, that simple classroom exercise later influenced my teaching practices to include making my students read a book about a person they did not admire – and learn something from them. The point being, that even the things that we hate or despise or loathe, can teach us something if we force ourselves to see through the eyes of the things we do not like. To educate ourselves about the things we oppose in order to properly hold that opinion So with that in mind, we shall begin.

So the things that are pissing me off today are:

Homophobes, misogynists, men’s rights groups and their counterpart, father’s rights groups, racists, sheeple, badly designed facebook business pages, and their counterpart, shitty business websites, the health insurance industry, poverty, injustice, political corruption, poor education and standardized testing, the absence of the McRib (okay, that’s really not pissing me off, just makes me sad) cancer, mistreatment of LGBT foster kids, the apathy of Americans toward their political system and war. And sex trafficking. And genocide. And bad grammar. And the Oxford comma. And climate change deniers. And using religion to justify pedophilia, and hate homosexuals. And pedophilia and child abuse and neglect. And people who bully. And the labeling kids bullies, rather than just naming their behaviors. And child psychiatrist who just put kids on drugs instead of encouraging parents to step up and act like parents. And I am sure there’s more, but that’s enough for today.

Oh, I forgot – pro-life groups. Stay the fuck away from women. We don’t need you to make our decisions. If we want you up in our uteruses, (uteri?) we’ll invite you.

*Intermission*

gppy

Okay, so I snuck out of the house with the car to go sit by a lake and blog. Against medical advice. And two days without effexor so if my flow is a little off that is why. I escaped the tower. I went and got my effexor. I covered a bounced check while I was at it too. Time for sharing. Effexor acts on your serotonin and norepinephrine parts of your brain. Now messing with serotonin is not that much of a biggie, like when you stop taking anti-depressants that just impact that neurotransmitter, you just kind go back to being depressed as the drug wears off, and your brain is still not responding correctly. The norepinephrine, now that gives you wiry brain worms if you miss more than a dose. What are wiry brain worms, you ask? Well, you know that zzzzzzzt sound an electrical short makes? Imagine that in your head ALL FUCKING DAY. Like your brain is short circuiting all day. What I did discover is that singing loud in the car will make that sensation goes away. However, I do not sing very well, but I do it loudly, and no one can just sing all day. Of course, the other way to make it go away is to take the medication, which is why I snuck out of the tower, because I could not go another day with my brain attempting to implode. Now I am happily medicated, sitting by a lake because I needed to self soothe and no one brought me a puppy or baby to cuddle.

(Note: I have a lovely car full of potential clients unloading next to me to have an outing at the lake. Grandma (obvious meth head, or salter) her barely 18 yo daughter and the daughter’s child, and teenage male all have sprags hanging out of their mouths ( not the baby, of course) and hot ashes are sprinkling the baby. Lovely. F bombs all around. Job security. OH wait, there’s another teen mom unloading. And another! Three teen moms all came out of a car clearly not big enough for three car seats. Damn it. Caseworker brain off, and they are here to have a photo shoot with grandma and child #1 on a dock at a boat launch with no safety floatation devices, (my guess is that none of them can swim) and if the child falls into the water, guess which great bald-headed whale is going to have to jump in to save said drowning child? Well on the plus side, it will at least soothe the child’s burns from the cig ash.

Back to my anger fueled rant. I am not going to point out the stupidity of any of the things that I am angry about today, but rather, since I did some “tuning into self and others” on my way here, I am just gonna ramble. First, there was a female college student who was apparently murdered because she turned her school’s rugby team into the administration for chanting a vile hateful chant about rape and necrophilia and it was caught on tape. The school disbanded the rugby team, whose members then decided to threaten this young woman’s life. When the young woman told the administration, they said there was nothing they could do ( I paraphrased here – here are some articles http://jezebel.com/entire-college-rugby-team-suspended-over-recorded-fuck-1692488876 and http://jezebel.com/college-accused-of-ignoring-threats-before-murder-of-fe-1703069555 – these articles do not link the two events, but others do) And now she’s dead – strangled at school. And men’s rights groups are cheering about it, with comments like “she took one for the team.” Disgusting vile pigs. Not men, beasts who think only of their needs and selves. And if you are one of those men’s rights assholevists, fuck you and your misandry. You have lost no rights, you have no fear of violence anytime you are alone, no one fails to take you seriously because of your gender, you still make more money, get more opportunities and have more advantages in this messed up culture than me. If you want to take on “reproductive rights”, then how about you make sure you don’t “accidentally” get us pregnant? Take responsibility for birth control. That is a right no one is interested in taking that away from you. You can’t expect a woman to include you in the decision about what to do about an unwanted pregnancy when you did nothing other than ask her if she was on birth control before it happened. Wrap your shit up. Not only does it minimize the likelihood you will become a surprise dad, it also shows you respect her enough to not give her whatever STD you had and forgot to mention. Oh, right…when you passed on those genital warts, you did really think about whether or not she would have cervical cancer because of your gift later in life, because there were no obvious symptoms for her, until she got that uh-oh it’s cancer biopsy.

Now right about now, those people who want to inform me that none of this is a logical or valid argument are like, I’ll set her straight. Don’t waste your valuable typing skills. I don’t care. I will delete it anyway. (for the record, meth grandma is back at the vehicle). I can be Judgey Mc Judgeyoants here, cuz it’s my blog. And truly, while I can be judgmental, and I will admit that, I do try every day to catch myself when being hateful and mean, like with grammy meth head. I remind myself that I don’t know her story, and I try to send thoughts of well being and compassion out to her. It doesn’t make judging her right, and I wouldn’t want to live in a world where we were all the same, but because we live in a culture that tries to make things fit in the right/wrong/black/white mold all the time, we grow up assessing things My job is about assessing things, particularly child safety. But sometimes I am that w. word. The one that rhymes with bong. My goal in life is to accept people without judging, particularly the people I disagree with. I can accept the person and I can continue to reject their philosophies/belief systems when they are detrimental to others, especially those who are culturally “The Other.” If you want to have a debate with me, I’m down for it, but blog comments or facebook posts are not logical debate forums, rather they are opinions. I like lively discourse, but I won’t tolerate pedantic statements and high brow insults. Don’t try to appear the sophisticated intellectual, because dude or dudette, when I turn my serious academic brain on, I will not back down.

*Intermission*

gppy

Well, I left the lake and returned home. Upon opening the laptop, I discovered I had accidentally deleted a large portion of my rant. I am sure it will come back to me another time. In the time that has passed, I was also re-angered by more cultural stupidity. Seeing that I have already blathered on for three or so pages and who knows how many thousands of words – I’ll end it here. I am really tired, and now that I am happily medicated, maybe I can fall asleep at a reasonable time. If you are wondering about the whole cancer thing, scans are Friday and I am tying to focus on other things until then, like, going to see that feminazi film, Mad Max. Oh, there are pictures of my trip today too. I am just too tired to post them now. Bed time.

anak kirik wengi sing apik!

*well, there are those squirrels, woodpeckers, bits of foil, grass, chuck-chucks (aka groundhogs), sticks, robins, chipmunks, lawnmowers, clouds, a breeze…

 


Because Sleep Is For The Weak, I Mean Really Weak, and Tired, and Cranky

I’ve got my crankypants on today. I am on the verge of a breakdown, which I am eagerly anticipating since once I have it, I can get back to the business of being me. I almost typed normal, which I have never been, or will be. Even commercials are annoying on TV – especially the flonase one, in which I am told repeatedly that six is greater than one. Thank you very fucking much flonase. I know that the American education system is flawed in a lot of ways, but I am pretty sure anyone who ever attended school learned that six is greater than one. In fact, my guess is that unless a person was raised by wolves, EVERYONE knows that six is greater than one. I don’t need big pharma trying to sell their product to me with a condescending commercial. So fuck off Flonase.

And Snapple commercials – also fucking stupid. And any feminine hygiene commercials, except for those great commercials from a few years ago, where the woman mocked dancing and riding horses when a woman has her period. If you want to sell me you shit, appeal to my intellect, or make it direct, but don’t try to trick me. Again, I suppose it’s because I don’t consider myself a sheeple, that I think most of what I see or read is skewed and manipulated and trying to make me a mindless consumer. With this is mind, I have taken a new approach to shopping, from an article I recently read about living a more simple life, and death – when I am going to buy something, I am now going to ask myself, will anyone want this when I am dead? Because if not, I don’t need it, because people will only throw it out when I die.
These are the things keeping me awake besides the decadron tonight. And since I cannot escape the omnipresent thoughts about this fucking vicious monster inside me, you, my friends, will also be subjected to it until it either a: it goes into remission, or better yet, vanishes or b: I have a breakdown and stop stressing over it or c: I die. Yes, I said it – die. Because we all do, and since I see more and more people my age doing it, and because of a conversation I had with my old friend Anne, in which we realized that most of the people we hung around with / dated in high school are, well, dead, it’s been on my mind. And the tragic mess that is my house is also a reminder that should I die tomorrow, from this disease, some other medical issue, or from walking under a falling piano that Wylie Coyote was planning to drop on the Roadrunner, it could happen. There are journals to be shredded and/or burned, wills to be amended, and just other odd bits to be destroyed/discarded. I am not worried about what I put on Facebook or in this blog, because whatever I put on a computer will live forever. I used to think about that when I wrote in my journals, but there are some very dark times in years past, that are better left unread. Nothing that would enrich or improve anyone’s life. Of course, there’s a burn ban in effect in Schuylkill County for the next month, so it’s not like I can burn them right now anyway…but if you read this, and if I should die before the end of May, there’s one journal in my bedroom, and I think two are in the giant steamer chest in the living room with all of my photo albums and a copy of Madonna’s Sex book which I put in there because it would be too much trouble for Andy to move all the stuff on top of it to get in there and find it. Somebody get in there and destroy that shit ASAP once I am cold.

And while we are being candid here, I am gonna put this shit out there too, again because I am cranky and I am gonna be up for a few hours because the sucky decadron make me superhuman and amps up my anxiety x100 the night before what we are hoping is the last chemo for the next 20 or 30 years. When you have the stupid c-monster, or any other chronic disease, people will ask you how you are feeling? I really want to tell people how I feel, but most times you just say, fine, or tired, or great, and slap that stupid smile on your face, to make other people feel more comfortable. After the next two or three weeks, that might be true, but this deep into chemo, the answer I bite back is this: I feel like shit. I could sleep 24 hours a day, every day, except when it’s warm and sunny, and I want to go out somewhere but don’t feel up to driving myself. So I sit on the porch. I feel nauseous most of time (this is new, I have to eat every few hours or address the need to hurl with other treatments) and nothing that I eat or want to eat really tasted good. I have this weird smell in my nose that won’t go away. While my eyebrows have not completely fallen out, most of my eyelashes have and I wake up with my eyes crusted shut every morning and my greatest fear is that I will lose my excellent health care insurance because I will get too sick to go back to work and I will be reduced to substandard health care, or worse yet, medical assistance, and will not be able to afford getting well. I have weird pain, I forget shit all the time because of my chemo brain. And I am afraid every time I go to the doctor that I will get bad news and have to continue with my treatments indefinitely. That’s how I am feeling – how are you? But you don’t get to say that. (sorry I know I’ve said this all before, I apologize for the redundancy. No, not really, this is my fucking blog and since the only people here in the house to talk to at this time at night have their eyes permanently sewn open and their mouths sewn shut, there’s a lack on interactive conversation.) Random thought: Does Chris Isaak even write music anymore? You never hear about him anymore. That’s what I need, I playlist with Chris Isaak, Morrissey and Elliott Smith, with a dash of Jesus and Mary Chain circa Darklands tossed in there and I would never leave my bed again.

Yes, it’s true I am feeling sorry for myself. I am scared to death of what’s to come in the next month. I am scared that I will need to have more chemo. I am scared that the scans will show something I don’t want to know. I am not a fan of this nonsense at all. I’d prefer to lie in bed sleeping all day because I am just a lazy cow instead of it not being my choice to do nothing. I would prefer to go through life not thinking at all about whether or not I am going to have to have treatment again. It’s so not fair. I long for the days when staying my jammies all day was a decision, and not because I am too weak to get dressed. I want to enjoy a shower, not dread the exhaustion that follows. I want to look forward to cooking, not just pray I can find something that tastes good and requires minimal exertion on my part. I want to enjoy drinking water, and not fear it will taste like poison when I drink it. I want to walk up a flight of steps without gasping for air like a fucking trout out of water. I want eyelashes dammit!

It’s now 2am. We are leaving at 7:30 tomorrow because my doctor’s appointment is an hour earlier. Of course it would be on the day that Andy is going to be my chemo pal. Hopefully the Dr. will be on schedule, and we’ll be in and out of there, and Andy can go sleep for a few hours at Tom’ house while I get my treatment, so he’s not up all day and then has to go to work with no sleep. What does that mean? It means if you feel like visiting me while I am pumped full of poison, I will be in the second floor infusion room, hopefully one with windows, and a decent automated bed (not like the bed that required manual adjustments the last time I was there) after 11 am, because before that, we will be getting Asian rice crackers, Starbucks and some more oxycodone, to make chemo more fun. It’s only 3 more hours until decadron dose number 2. Good times.

I was going to try to end this with something positive, but I feel that would be fake, so I am just going to start packing my backpack for tomorrow. I’ve found that since I don’t need to bring a blanket to the infusion center, I can actually get the laptop, my stuffed friends, and snack all in one backpack so I don’t look like a dying homeless person when I go to the hospital. I suppose that’s positive. And I can throw my sheets and blankets into the washer and actually dry them before I go so I can have a clean fresh bed when I get home, so that’s positive. And I already have ginger beer, honey and pineapple juice to get through the next few days. That’s plenty positive.

I think I might actually blog from the hospital tomorrow to document the day’s events. That could be fun. Now I am off to fold another load of laundry and eat a yogurt. Then try again for sleep. So curl up with your favorite toy, my puppies, and sleep tight. And think about all the people who have bed bugs, and be eternally grateful you don’t. Bon soir.

Addendum: There should be an assessment period before people are allowed to be on Facebook. Like they should have to have a myspace and it should be monitored for stupid and annoying things that are misspelled, bigoted, or obviously scams or urban myths. If a person posts that shit, they should never be allowed to move up to facebook. I am tired of being the internet police, sheesh.

Also, why when you google anything about cancer, everything is pink and has to do with titties? I mean I get that breast cancer is a huge issue for women, being that I am one of them, but what about all the other killer cancers out there, why does it seem we only care about cancer that affects the one part of women that, aside from the vagina, are something of interest to men? That pisses me off.

angry-cat_o_1041758I don’t usually like grumpy cat, but this made me laugh.


The Most Wonderful Day of the Year

Okay, it was three days, but that would make a super-long title, and I was trying to be succinct. (As if that ever happens.) I bet you thought I was going to write about Chemo Day, but that’s today, and hasn’t technically happened yet, except for the pre-gaming with Decadron and water and the daily cancer killing tea. I still need to shower and pack my stuff for the day, and am faced with the usual decision of do I take my cute pink back pack and carry the lap-top separately or do I take the black one with wheels? I am leaning towards wheels today because it fits more and well, has wheels, and I’m not feeling my best but I don’t seem to have a cold or ebola, and I don’t have a fever – which is awesome because I was scared I would be sick today and then have to postpone today’s fun fun fun. My chemo-buddy today is Kellie, who I know is thrilled beyond anything to be accompanying me to today’s festivities.

BUT! This entry is about the best three days I have had in a long, long, long, long time. If you have reading my blog, you know Off With Their Heads is one of my very most favorite bands. Listening to their record In Desolation (“Drive” video here) got me through my first six weeks of radiation and all that first round of chemo and their music accompanies to nearly all of my drives to and from Hershey over the last 3.5 years. When I remember my headphones, I listen to Ryan’s Anxious and Angry podcasts at work, or in the car. The music has become part of my support system. Well, Thursday, Andy and I drove to Pittsburgh on what was supposed to be a beautiful day to see OWTH play at Howler’s Coyote Cafe (note: saw no coyotes – I would make a cougar joke here, but I find the term cougar offensive, I prefer tigermom). Their show was amazing, the energy and passion of the band was amazing. They played songs from all of their records, and Ryan was awesome. The energy was awesome. The opening bands – World’s Scariest Police Chases, Barons, and PEARS – were all incredible. I met an internet friend, Erica, her husband Brian and some of her friends at the show – we became friend because we both like OWTH and punk music in general, and surprise, we are both work with kids in the system – I snatch ’em and she assists the ones that the court declares incompetent. After the show, I got to get hugs from Ryan and talk to him for a little while, which is always fan-girlie for me, because I can’t believe someone that I look up to takes time to talk to me. I got to introduce him to Andy too, which was cool. I had to have a drink with him, but alas, Howler’s is a bar that allows smoking, and by the time the shows were over, I was dizzy and shaky and a little nauseous and just wanted to go home. Ryan said they would probably be playing in Philly in September, so I hope to have that drink with him then. It was an amazing night. I also got to meet and talk to Zack from Barons while I was standing outside the bar waiting for Andy to bring the car around. Fucking stupendous night. (and if you read this Ryan – THANK YOU for being who you are – you made my night)

Day two was supposed to be the Warhol Museum, but Andy and I decided that even though it was snowing, we were doing the Pittsburgh Zoo and PPG Aquarium, because when I have to choose between becoming more cultured or seeing animals and making animal noises, I will ALWAYS choose the latter. Bring on the Komodo dragon, red pandas, and giraffes. And very sad elephants. And PUFFERFISH. Several different kinds of pufferfish, evil, evil pufferfish. Did I mention that the Zoo is on a hill? Or should I say a mountain? Because it’s a mountain. A huge mountain. And Andy would not push me in a “safari cruiser” IE. wheelchair. So I had to walk. Wearing heavy Doc’s sandals. Carrying water. It was brutal. We probably walked at negative 1 mph. Lots of heaving breathing and a frequently sweating head that was frosted by the subzero wind chill and flurries. It was fun though, spending time with Andy, telling him about the trips to the zoos and aquariums when we lived in California, making animals sounds, trying to find the animals that were clearly not home, and making flattened pennies like when he was 5. Afterwards we went back to the condo, got some great Italian beef sandwiches from a tiny place called Tooties (yum!), then just hung out and watched non-cable tv and napped. Later we got pizza from this greek pizza place called Ephesus, and again, awesome food. We just hung out and talked and slept the rest of the evening.

Saturday, we got up, cleaned up the condo, packed and headed out to an overlook to see Pittsburgh from the top of one many hills. Pittsburgh is an awesome city. We found an overlook, not the one we were looking at because in addition to sucking at taking night pictures all of the sudden, my phone’s GPS takes us to places that don’t exist. Or rather, when asked to take us to a location, it agrees but then leaves us in spots that are clearly not even remotely near where we asked to be. We did get to see a lot of Pittsburgh though, and Andy is even considering going out to Pittsburgh to finish school (YAY, FUCK YEAH!) Fortunately, the GPS cooperated with taking us to Abby Lee Miller’s Dance Studio, where I stalked cars pulling into the parking lot to see if there was a real Dance Mom getting out for class. None were available, but there were the cutest little people being brought to class. The studio was less impressive from the outside that it appears on the TV, but it was still cool to see it. Then we headed to Philadelphia. Did I mention it was FREEZING? Like super freezing. And snowy. We got to Philly by about 4, and hung out with Blaine and Lizz and had a delicious dinner from a real Mexican restaurant called El Jarocho that made scrumptious lamb tacos. Then we headed to see TBR/The Wilhelm Scream/ Pennywise, which was a fabulous show, but in my opinion, lacked the energy of the bands on Thursday, although it was very cool to realize that Pennywise has been a band for longer than Andy is alive, and I finally got to see them with their original vocalist. I hadn’t seen them since 2008. Long time. Unfortunately, I got a horrible horrible pain in my side and had to go stand in the back to try to work it out – we ended up leaving before the last song or two, but at least the pain subsided for the most part. We caught a cab back to Blaine’s to get the car, and headed home. But not before we stopped at Wawa, and got to see two drunk girls in ridiculously high heels almost wipe out several times in the store as they tried to outlast the state police DUI checkpoint. Good times.

We finally rolled home about 2 am. The house was freezing, but honestly, it was a small price to pay for such an awesome weekend. It felt so amazing to be among my people, enjoying simple things with my son, and talking about life and lessons and futures and hopes and dreams, and meeting awesome new people, singing at the top of my lungs to songs I love, and finding some peace in all of this. I basically slept through the next day – I was exhausted. I made it to work on Monday, and realized that if I died that day, I’d have no regrets – not like I don’t have plans for the future – but I was pretty damn happy, and would be okay if there wasn’t anything else ahead – I’d made peace with what could lie ahead. And made arrangements with Andy to be turned into fireworks whether things end in the next few years, or 50. I’m okay with it all. That’s not to say that I am not concerned, and wouldn’t prefer to live another 50 years, but whatever is ahead, I’m gonna be okay with it.

I’m actually finishing this early Thursday morning – post chemo. I’m going to stop here, and write about my Dr. visit and chemo later today, because I decided to wind down tonight with a cocoa-vodka/oxycodone mix, so I can sleep pretty soundly tonight. I also drank a lot of water today, so I am trying to avoid waking up ever hour to run to the bathroom. And I’m still feeling okay with my life, and what’s unfolding in it. The three day trip really refreshed me, reminded me that despite the horror of the last year and a half, from the time the pain started to today, dealing with this stupid fucking disease, I’m learning about me and what matters to me again, and finding the strength to make plans again, even if I still can’t act on them. Life is still hard, I’m still not always making the best choices, but this weekend reminded me of the person inside, and what brings me joy. I just need to bring more of it into my life.

So with that said, here’s some of my favorite pictures from the weekend – I didn’t take any pictures at Blaine and Lizz’s house – I don’t know why because their puppy Pancake is a sweet dog and fun to play with. It was great to see them again, and just hang out. But I am derailing again – here’s the pictures, including the evil pufferfish, enjoy them and come back later today to learn what the Dr. said my future looks like…sweet dreams my dahlings, I will have a peaceful early morning rest, hopefully, before the sickness starts.

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