And Now We Have Deatheaters
WARNING: Straight up, this is going to be graphic, probably long and definitely rambly. You might want to get a drink or snack now. Unless you are one of those weak stomach people, then don’t get the snack ’til later. I’m not going to give the warning again, so it would behoove you to skip this one if you don’t like to know all the details of what’s shaking with the pufferfish and the havoc it plays on my female anatomy. Additionally, there may or may not be morbid comments made about my demise, which I found particularly funny, and thus wanted to share. There may be political ranting and more unsolicited opinions which I will impose upon my readers. YOU HAVE BEEN WARNED AND CAN CLICK THE X NOW if you want to wait for an entry about ponies or fairy princesses.
But first I must offer a more detailed explanation for prolonged absence from the blogiverse (or rationalize my lack of motivation). See, right now I am sleeping on the couch, or rather I am occupying the couch 24/7. The reason for this is that the pufferfish requires that I sleep no more than two hours at a clip. There’s no way around it – I could not drink a thing for 12 hours and I would still need to get up and hit the bathroom. So because I get no extended sleep, I’m kinda tired. Really. So I take lots of naps. Sleeping on the couch forces me to get exercise by going up and down the steps at least twelve times a day, usually more. I need as much forced exercise as I can get. My new sleep habits and constant tiredness are also not conducive to doing things that require extended focus. So no matter how much I want to write, the whole getting the laptop and opening a file and all that seems like a ridiculous amount of work. Making a fucking hot pocket is a lot of work these days. Andy also got me a iPad for Christmas, so it much more convenient to dilly dally with that in the short wakeful periods than to get the lap top. Problem is that Apache’s Open Office, which is what I use for word processing, has no app for the iPad and I can’t write on the iPad I can do multiple virtual jigsaw puzzles, however, as well as use virtual coloring books. But I can’t write, and since I am leaving these files for Andy to publish if he wants after I am departed. I have to leave him some sort of legacy, because we all know my biggest financial accomplishment is the fact that I will be sticking the US Government with the balance of my student loans when time comes for me to go on disability or drop over. While my vast possession include a cache of craft supplies in case there’s a craftpocalypse, and multiple curious items and rocks, their value is more of a personal nature than monetary. It is at this juncture I will share the delightful conversation my beloved child and I had regarding the future the other morning when he came home from work:
Andy: What’s that?
Me: A record I got from Anxious and Angry and my new flexi.
Andy: You only got one?
Me: It’s not like you don’t get all this stuff when I am dead.
Andy: Speaking of that, suppose you prolong this and you don’t die for say, a long while, which is what I hope for, but, do I have to wait that long to get your vinyl collection?
Me: You can always borrow them, as long as you take care of them, if that’s the case. I’ve always let you borrow records.
Andy: Yeah, I know, but it’s still your stuff, I was just wondering when your stuff is my stuff. Not that I’m in any hurry or anything.
Me: Laughter
I am very glad we can have these refreshing conversations. But back to my excuses for the delays – sorry, I just didn’t have what it took to make the effort. I am feeling better today for the first time in a while. I spent an hour floating in an isolation tank at Art of Floating yesterday. There’s a 1000 pounds of Epsom salts dissolved in the water in the tank, and you just float in silent darkness. It’s like you are on a warm cloud. Very, very relaxing and it’s supposed to be very good for detoxifying your body, because of reverse osmosis where the salts in the water extract the toxins through your skin. Whatever, I just know I was jelly when I was driving home but by the time we got here, I was really sickish, which pissed me off a bit because I wanted to go to work today and I was afraid I would be sick again. But when I woke up today I felt pretty good – albeit tired as usual with the spewing in full swing, but no wretching and gagging. I made it to work, and even went grocery shopping. I am going to try to do the floating once every other week, so hopefully it will make me feel healthier. And while that was a real convoluted way to get to the fact that up until today, I didn’t feel like making the effort to write, and couple that with post holiday seasonal depression, if I lived in a rain forest, there would be moss growing on me. But here I am, full of snark and what not, ready to tell you all about the deatheaters and update you on the current state of my health with full graphically gross details (there would be pictures, but I don’t take my phone in the bathroom because I am afraid it will fall in the toilet). Aren’t you fabulously lucky?
Please also be advised that the new season of Vikings starts tomorrow. I will be unavailable on Thursday nights.
Now, back to this month’s doctors appointment, and it’s prequel, the CT scan. Back in January, I buzzed on down to Hershey for my scan. Now, since I was attacked and brutally tortured with tubes and catheters, when I go in for a scan, we now have to talk about my kidneys before I get the scan due to the contrast die they use. The technician decides to check my blood before giving me the dye, in case they have to decrease it. It only takes her a few minutes to come back and say there’s concerns with kidney function and they will just give me a low dose. This immediate turns on the freak out switch in my brain, because Dr. K constantly reminds me that if my kidneys aren’t 100%, he’s making me go back to urology. I will fight this tooth and nail because those two horrid months of the tubal torture when I had that stupid nephrostemy and catheter made me realize that I am not even considering that being part of my end of life scenario. I’ll get eaten by a shark first. Anyway, panic has set in. So I headed home so I could obsess about how long it would take for them to post the scan results so I could then also obsess about said results until I see the Dr. six days later. It took almost until like 1am to get them posted. And they were perplexing. Pufferfish was smaller, which was not surprising as it was constantly spewing nastiness, but as for tumors on my lungs, the one on the left disappeared, while the one on the right grew .5 cm. Which leads me to believe that these were not really tumors to begin with, but flies on the screen or spilled coffee. The scan says that the pufferfish is showing signs of necrosis and that there is no signs of the cancer spreading. I am familiar with the idea of necrosis as I have a weird interest in flesh eating bacteria as well as having watched an episode of House where House used maggots to eat away dead flesh on a patient. I am not sure that this is a good thing, but the more I read about it in tumors, the more it seemed like a good thing.
My research explained that necrosis in a tumor means the tumor has lost it’s blood supply and is now dying. This is good. The body has two processes for getting rid of dead cells and tissues – the normal one dissolves the dead stuff and it processes it through the blood and liver. And all is good. You can look the name of the process up, I can’t recall it right now. The process in necrosis is a tad different because it’s not a normal cell death, so the body turns the cells in to a blackish bloody pus that is the bane of my vagina right now. I should own stock in feminine hygiene products. What google’s sources of necrotic info didn’t tell me is that sometimes the cells and tissues don’t dissolve – they are just ejected. Cue arrival of the deatheaters. Slipsliding their way through whatever hole is or isn’t there in pufferfish, they slink their way out of my vagina like ghostly black boogers, or sometimes like larva or weird vein like creatures, or even more unnerving, things that look like curdled coke that sometimes happened when you made an ice cream soda. Understandably, the first few big ones make me a little nervous, but it’s not like I was in a lot of pain or anything.
I was feeling kinda positive when I headed to the Dr. on Monday, with my new found knowledge. My blood pressure was perfect, I wasn’t nodding off in the exam room, my appointment was only 45 minutes late, and the waiting room was actually not packed like a tin of whiny sardines. And I was early so I wasn’t even rushing. This semester’s minion came in and I told her about the deatheaters and all the other flotsam and jetsam being flushed out of pufferfish and she took appropriate notes. Then she went off to fetch Dr. K. He came in with my scan results and said “well, your cystic mass is smaller (yes, read the same report) and that we’ll just have to wait and see what happens. He assured me that things falling out of my vagina are okay. Unless it’s like an organ or something. As my cancer has been the exception rather than the rule, he can’t tell me what the pufferfish is going to do – in the best case scenario, it will be devoured by the deatheaters, and it will be purged from my body, and then we will focus on the lung tumors. It could also stop dying, or it could affect the surrounding organs. But it’s a good sign that I am a non-stop fountain of pus. So as Dr. K put it, we’re no worse, so that’s a plus. I know he’s trying not to give me false hope. I’m okay with that, and with the wait and see approach. In the meantime, I get to continue to take the dreaded chemo pills, particularly the hated Tamoxifen. Dr. K seems to think that this change in the activities of pufferfish is a result of the chemo pills, I choose to believe it was the use of herbal medication, turmeric tea and constant visualization that the pufferfish was turning into the black-hole of my pelvis and folding into nothingness. Either way, we”ll just keep visualizing it vanishing, and hope it doesn’t get creative. I don’t have to go back to the Dr. until April and then we’ll decide what’s next. In the meantime, every bathroom trip offers the opportunity to first hand examine rotting flesh as it’s spat from my body. Cancer, people talk about you like there’s nothing positive – hell, I am getting a live anatomy lesson daily. To help you get your head around what a deatheater looks like, picture a piece of spinach in a soup, it’s all feathery and floaty, except deatheaters are black and look like dementors from Harry Potter.
Fortunately, none of this is more painful that having cramps before your period. In fact, all of it’s very much like a period, except for my lack of a uterus and ovaries. It’s amazing the multiple shades, sizes, and behaviors of this decomposing flesh. The worst of it is it’s impact on my liver, which is fighting to filter grossness out of my blood and how exhausted that makes me. But as I told Dr. K, if this is the alternative to being stuck with tubes, and being in pain and having brutal pressure, I’ll take this 1000X.
And now, I am tired. My head feels much lighter. I’m even considering taking down the Christmas decorations, at least outside, this weekend. I’m still not much of social animal, my limit is like 2 hours, but visitors are always welcome at the house where Christmas puked. Social interaction is always welcome. I’m gonna go whip up a hot pocket and then snuggle in for a two hour nap. Send good mojo that the pufferfish is in its last days and that it stops when it’s done eating itself, and continues to push out deatheaters Enjoy your evening and remember the days are getting longer and spring is just little over a month away. Soon you will be blessed my annual obsession about spotting the first robin. Yes, yes, I know you can’t wait. Now be off.
‘Twas A Couple Days After Christmas…
Hey there! How was your holiday?
I hesitated on writing this entry because I didn’t want to be a buzz kill, but of course, my self then reminded itself that this is where I go to make the bad go away, and decided I could be happy and sad in one entry and just be done with it. And post pictures. Pictures are always good. And if you don’t want to have any of the sad stuff on you, you just don’t have to read it.
Christmas eve was pretty good. I made crab and shrimp korma. Delicious. Dinner was also okay. I was late, but only because I figured everyone else was going to be late like they were last year. Apparently not. But even when we go there, we couldn’t just get to the business of eating because there needed to be more ice purchased and beer retrieved. We eventually ate, as usual, the prunes, mushroom soup and seafood dishes. Amy put bacon in her shrimp dish she made, not knowing that my family believes that you aren’t supposed to eat meat on Christmas eve. They’re wrong, but I don’t even bother going there anymore because apparently no one but me paid any attention to those Vatican council things in catholic school. Two days of fasting only. Ash Wednesday, Good Friday. Even though I am not longer catholic, or even christian, that shit was drilled in my head by nuns, and will remain a part of my knowledge base forever. Of course, since it was Amy, it was laughed off, but had it been me who dared to bring meat to the Christmas Eve dinner, I would have been banished to eating in the car and ridiculed the rest of the evening. I love you Amy, sneak bacon in every year. So we ate, and then we waited for the nephew(s) and niece to show up for the secret Santa exchange and family photo. After the photo, we are free to leave, but no one leaves until the photo is taken. But I get ahead of myself.
Much of the holiday evening in spent on the back porch because it’s too hot in my dad’s house for anyone to be comfortable for any extended period of time unless you are dressed for summer. I remembered this, and wore shorts and a sleeveless top. Even so, the evening was much more comfortable outside than in, and since my family home is in an alley, it was convenient location for regular medication administration for me. I only had to comment on the racial slurs and reference klan meetings twice. Finally it was time for the exchange. First, we had to debate whether or not we change the way the way we do the exchange (20 minutes) and then another heated discussion about who should go first (10 minutes). Finally, we decided on youngest to oldest. I wanted the box with the sock monkey on it. I didn’t get it. Since I am the oldest child, I went second to last, as only my dad is older than me. I elected not to steal anyone elses’ gift, and picked a box. Here’s where the fun starts. Inside is chick-fil-a cow in a Santa suit in the package that reads promotional item not for resale. I only wish there was video of me saying “oh, it’s a chick-fil-a cow” and then moving it out of the way to see what else was in the box. Tissue paper. Under that, nothing. Nothing taped in the lid. Just a 5in stuffed cow in a Santa suit from a restaurant I won’t eat at because I am opposed to their anti-gay positions. Double insult. Not that I really care all that much about getting a gift, because quite frankly I rarely get things I want, and I really don’t need anything besides an Amazon Fire TV stick, and I am getting that on Friday. But the irony of the situation – I spent all week making sure I met the 25$ minimum and selecting the perfect gift that would be enjoyed by whoever got it. And I got a cow. Oh well. My brother did give me his PSP business card in case I get caught speeding, and a gift certificate for another float in the isolation tank, which is exciting, and I won 25$ on lottery tickets, so it wasn’t a totally bust. Here’s the cow…
Next was the photo – which didn’t take nearly as long as it usually does – and probably turned out pretty well, although I never get a copy. This year we had new guests in our home, Andy, Buck and Mike C, and they were unfamiliar with the practice that if you are in the house when the photo is being taken you immediately become family and are expected to be in the photo. This added a few extra shots. I stood in the back row next to Jamie, who had his arm around my neck so tightly I thought he was trying to strangle me. I did manage to get my head semi-erect for a couple takes. The rest I just gave in. My neck still hurts. Which one of my brothers is Jamie? He’s not, but Jamie is always included in our family photo, and we don’t even take it until he’s there. He’s my youngest brother’s friend. This year, his new girlfriend joined our family too. Finally it was over and we were permitted to depart.
Andy had told me he wanted to put up the last tree, the one I call the memory tree, and decorate it on Christmas eve, and I agreed. He was planning to go out for a bit, and I told him just to get the tree fluffed and the lights on and we’d finish when he got back. I reminded him to put the top of the tree on before adding the lights. I went next door to hang out with the Rooney’s as usual after returning from Christmas eve dinner, but had to leave early because my body was shutting down from all the activity and said to go lie down. I returned to our abode to see the tree Andy was going to fluff and light looking like someone was trying to tie it up with lights. And none at the top, because the lights went on before the top of the tree. I started to take them off, but when I found they were wound around the tree like a yo-yo, I decided that I’d wait for Andy to to come home and take them off. And I fell asleep.
Lo around 2am, Andy came home. I asked him to take the lights off the tree. He was pissed because he was proud of the job he had done. I insisted and he started to spin the tree around like the head of Linda Blair in the Exorcist. I was afraid the trunk of the tree would split because it was squealing like a piggy. Finally the lights were off and I told him to go to bed, and I would fix the tree and the lights, and we’d decorate in the morning. So at 4:45 am, I returned to bed, the tree properly lighted and starred and fluffed. Around 8, Andy came to ask if we could open presents. I said when the tree was decorated. But I wasn’t getting up yet, so it would wait. I relented about 10, we decorated the tree and proceeded to presents. Andy was very excited to give me mine. My first two were an adapter and USB cord. The third was an iPad mini. Unfortunately, it doesn’t work. I turned it on and it went nuts. We tried to hard reset it and nope, not working. So day two of gifts went afoul. Although Andy was thrilled with everything Santa brought him. Especially his new turntable. He was very happy. And he told me I outdid myself with decorating. I returned to bed – the pork for the enchiladas was cooking and I was exhausted. In fact, I spent almost all of Christmas asleep. My body was not allowing movement even if I wanted to. Which was okay – we got Chinese and just chilled. It was a perfectly happy Christmas No stress, no drama, just quiet, and my son.
Here’s the pictures of some of the highlights of the house where Christmas threw up. Andy and I got these really cool painted cinnamon ornaments from a friend of his. They are awesome. I didn’t include the white tree because I couldn’t get a good picture yet.
So that’s the good. Then there’s the sad – like when you realize that you don’t need to go after Christmas shopping because you are not expected to be here next Christmas, so don’t go investing in Christmas displays for next year, because it just might not be happening. I don’t want to say that I have given up hope on that, because I haven’t, and I want to say I believe in my gut that I’ll have another Christmas, it just seems silly to plan a year away at this point. It’s just a reality I face. The days go by and I wonder if this is the last time I will do this or that and the worst is wondering how Andy will get by without me around and I am just so glad I was able to give him this amazing Christmas. Even though I suck and didn’t get around to making Christmas cookies, but there’s still time for that, they’ll just be new years cookies. And today, I found out that a long time friend’s sister who was dealing with cancer, passed away right before Christmas. And I had just sent her a Christmas card, and I thought how sad it is that my card didn’t get to her before she passed, and how difficult this must be for my friend, who was very close with her sister. And I think about them both having to face this nightmare and how it takes and takes and takes and what a mind fuck it is. And I think of all the platitudes people must be saying to my friend, how she put up a good fight, and she was strong (which I am sure she was) but the bottom line is that no one should even have to deal with this. You shouldn’t have to be a “fighter” or a “survivor”- as if she had any control over the rouge cells that attacked her body. Cancer really sucks. It robs the world of some very bright lights.
My next doctor appointment is on Monday. I am nervous about what is next. My biggest fear is not pain or chemo or sickness, but having tubes stuck in me again and having my ability to go about life relatively normally stolen. I can’t do that again. It really affected me mentally and physically. I am still trying to get back to “normal” – which is hard since I bleed all the time – and am once again adopting that luxurious pallor of the undead. The bleeding has me a mite unnerved, but again, I will take it over tubes any day of the week. I am just hoping that when I get sent to get scanned again that things are looking better than ever, and there’s a little mer-person spotted in there with trident stuck into the pufferfish. I am nauseous most of the time now, from the stupid chemo pills, but I have managed to pack on 10lbs over the last week from what I believe was eating chocolate and pizza in my sleep.
Wow, all that to say I was bummed thinking about how there may not be another Christmas in my future. I guess sometimes you have to take the long way there. Now it’s time for another bad movie on Netflix, and some more medicine and sweet, sweet sleep. I won’t be back until the new year, I have things to do. Now go on, and go hug your people tight. And say I love you – a lot. Happy New Year, for those who believe in that sort of thing. Me, I never understood why we get so super drunk and happy because we’re one year closer to death – and this opinion was formulated long before I ever was diagnosed with the c-monster. Dream sweet dreams.
Edit: You may or may not know that I usually come back a day or two after I post these entries and correct spelling, words I never completed and grammar. I am never going to be a proofreader. What I did notice is that these pictures do absolutely no justice to the real magic of the house where Christmas puked. Maybe I’ll take video tonight. I really is a magical thing.
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:
- 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)
- 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)
- 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.
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.
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.
No Bueno II – Return to Oncology Hall
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.
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.
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.
My Body is Temple (Of Doom)
Yeah, it was that kind of day. The kind of day you won’t forget and you hope will never come again. It’s still all very surreal, even though I have a folder with hard copies of all that went on and I can sign into the computer and see with my own eyes what I don’t really want to know. Stupid internet. S tupid body. Stupid cancer. You all suck.
I actually was early for my appointment today, even though I didn’t get out of the house as planned this morning. I skipped a coffee because I didn’t want to jack up my blood pressure which I anticipated as already being high due to anxiety. Surprisingly, blood pressure was perfectly normal. Better than ever, and I didn’t even take any pain meds this morning And I only gained a pound and a half in two weeks, which must have mostly come about last night when I was stuffing chocolate into my mouth with pretzels in order to create chocolate covered pretzels and then stuffing more feelings with a bag of sweet potato tortilla chips Yes, I wasn’t really hungry, yes, it made me sick, but the food just kept being shoved into my chomping jaws. Just like after my doctor’s appointment today when I tried to quell my emotional upheaval with taco bell and a banana milkshake at Sonic. As if it matters what I ate today, because tomorrow is chemo and I won’t want food for at least 4 or 5 days.
Okay, okay, I’ll cut to the chase. They didn’t have my MRI results posted last night or today. Dr. K came in to see me by himself, even though I heard the chattering minions whispering outside my exam room door. Not the best indicator. He looked at my MRI images on line and said he really didn’t see too much different from the last CT scan, and again went over the treatment options I had. I asked a few more questions this time, being that I was less in shock than last time – until he started talking about options. My beastly cancer-garden cyst is in a place that should he operate to remove it would cost me both my bladder and my rectum, because the pufferfish and friends are in close proximity to both and somewhat connected and that means they have to take anything that is possibly harboring mutated cells in the neighborhood. Fucking cancer. I don’t really need to elaborate on what the end result of that would look like, because I am not even entertaining that option. Even if he did surgery, there’s no guarantee that it would be a success, for a plethora of reasons including the fact that it would just delay chemo until my body healed, which would cost me time, and it would involve a very long healing time, and would be risky and very hard for me to recover from. Not to mention that it would change the quality of my life forever. He again explained why there’s not going to be any radiation, and discussed chemo versus anti-estrogen therapy. He remains positive that the ol’ c-monster will respond well to chemo, but really what else can you do but hope for the best? So after much sighing, he gave me a big hug, told me Anne would be in with my schedule and paperwork, and said he’d see me in three weeks. No minions today – they appeared to be a fresh batch because it was a new semester and I am sure he didn’t want to traumatize them too much on their first day in gynecological oncology.
Anne came in and more hugs ensued. And crying. And laughing. And she gave me my schedule and reminded me to pick up the good ol’ decadron and compazine so I would be prepared for poisoning tomorrow. She kindly color coded my schedule for me so I know when I have chemo, and dr. appointments and blood tests. Blood tests are going to be weekly this time because the radiation from last time has compromised my bone marrow and they want to make sure my blood counts stay where they should be. I also signed a release for blood transfusions. I got kinda excited about that, because fresh blood is a pretty good thing, I like when I get blood, it makes me all energized. We talked about herbal medicine for side effects and to compliment my treatment and I’m going to explore that with her okay. No zofran this time, just compazine to start for the nausea. She’s a great coach, and told me I did this once and I could do it again – the difference being this time the monster is still inside, and last time they cut the shit right out. And last time they took organs I was not longer using anyway. This time, I’d be missing parts I’m kinda fond of. Which again, not considering as an option. I’ll be seeing her pretty regularly at the ol’ Cancer Institute, as I go through this cycle. I also made sure I got my note saying that chemo would be poisoning me and I would be missing work. And a lovely catalog of hats with fake hair attached as if I am going to be seen sporting fake hair – if I want fake hair, I’ll draw it on with my sharpies. And off I went, to get my first of a bazillion blood draws. I did get a penguin sticker for my bravery during the blood draw. I am going to keep my stickers on my folder. My new rule is no sticker, no blood.
And in a repeat of two weeks ago, me and the phone returned to the car, and did our texting. And crying. Much shorter this time. I just wanted to get home, so I ran in to Karn’s and located both the delicious Halos and some Ginger Brew, so I can get through the next week. Then I comforted myself with the aforementioned taco bell and banana milkshake. It didn’t really work, but I did see my beloved pony-pony and that made me smile. He was hiding in the barn trying to stay out of the freezing wind. Another day out of the glue factory.
I was going to drive around for a while but I decided to just go home and curl up in bed and pretend none of this was happening. Of course, I had to check my online medical record when I got home, so I could add to the joy of this day by reading the MRI report. Apparently, pufferfish is now sporting two tumors, instead of one. Two. Two bloodsucking leech tumors. Two. The second one is 8cm long. The first is 10cm. So they aren’t exactly petite. Doesn’t change the treatment, but causes additional emotional damage. More crying, more curling up in a ball, more cursing my luck and trying to figure out what I did in a past life to be poor, fat, and get cancer in this one. Of course, as you can read, I’ve rebounded somewhat because I am writing about it. Cancer fact – every tumor after your first one is not only considered to be the same type of cancer as your first one, but also considered to be the same stage as the first, so they are all IIIB. Lucky lucky me. If only cancer was the powerball – I wouldn’t have won the jackpot, but I would have five numbers. Cancerpalooza.
So yeah, I am feeling sorry for myself. I’ll get up tomorrow and pull it together and get to chemo with my new skull blanket and some projects to keep me busy for the six hours of poisoning ahead. Cross your fingers that the weather folks are right this time and there’s no more than 3 inches of snow tomorrow. And that I don’t get the evil wicked winter plague that Andy has. And that there’s no more brutal wind. Oh there’s the bell saying take the decadron – be right back. Decadron pills are green. So now I take a pink, purple, green, white, yellow, red and white, and brown pill every day. If I start to take morphine again, I will add a blue one again. A rainbow of pills and no unicorn. So that was my day peeps, what did you do?
It’s time for me to load up the iPod with some podcasts and go down and make sure I turned the oven off because I actually made dinner since by the time I get through chemo sick, the roast would have been ready to throw away. I have to get up early again and pack my stuff. I know this wasn’t one of my funniest or most amusing entries, but hey, we have to take the bad with the good. I am sure chemo will be eventful. Apparently they have me scheduled for an infusion chair instead of a bed, and I am hoping that will change by tomorrow, because I am there for six hours, I should get a bed. I may or may not feel like writing tomorrow after all the fun, but I am sure I will be back in a few days, snarky and sarcastic as ever. As always, keep sending the good juju my way. And I’ll keep you entertained with these thrilling bloggy bits.
Night night my friends, and in case you were wondering, the Daily Show is back. And Crunchwrap sliders do not slide, they must be chewed. You’re welcome.
Magical Mystical MRI (or The Time I Got “Blue in the Face” Instead of “Trying to Breathe”)
Let me begin with this: I am not going to be making a resolution involving vodka and orange juice, because I decided that my relaxation cocktail is just that: pineapple, orange, and veggie juice with coconut vodka. It’s mighty tasty. I am having a lot of anxiety this evening (as will be discussed in the next paragraph) and I am trying to chill because I need to be bright eyed and bushy tailed for my Dr appointment tomorrow. I know I gained a little weight. I am not sure how, but I feel fluffier. I’m not stressing about that, because in three days, I’ll be so sick that food will be my enemy once again and the only thing I’ll want to eat are my go-to foods: pineapple juice, english muffin, oatmeal, yogurt and ginger beer. I want to make a pork roast tomorrow for dinner but I am afraid if I eat my friend, the pig, before chemo, I will lose my love for the other white meat the way I have lost my taste for artichokes and parmesan cheese the last time. And if I can’t eat bacon, what’s the point of living? Right now I am trying to coordinate with my brothers to get me to chemo and back because Andy is afflicted with the winter death plague, and I cannot be trapped in a car breathing his germs for an hour while we drive to Hershey. As it is, he is forbidden to be within six feet of me. And if he gets close, I pelt him with a hand sanitizer. So right now, it’s looking like I will be arriving two hours early for my appointment, and then waiting an hour or two for a ride home after we’re done. It’s gonna be a long, long, long day. But when in my life has anything been simple or easy. Enough stressing about what hasn’t happened yet, we have to review today’s adventure.
Let me preface this with this: the internet is a dangerous tool. Useful, but dangerous. Damn Penn State Hershey didn’t put my MRI results in my “My Health” account like they do with with my CT scans. How am I supposed to make myself anxious all night before my appointment if I don’t read them like I read my CT scan reports? Hmm? How can I prepare for the worst if I don’t have the info? I, of course, interrogated the nice young technician who did my MRI as to what she saw. She confirmed that there is indeed something in there, but I knew that – when I asked her if I should be prepared for an unpleasant surprise at my visit tomorrow, she would not commit. That typically means yes, I should be, because when they don’t put your fears to rest immediately, they are trying to find a way to avoid a straight answer. So we shall see. But again, I can’t worry about that until tomorrow. That is the point of the relaxation cocktail.
Well it was a lovely ride to Hershey. The fog was thick and murky on the interstate, as I tend to like it. It feels like driving in a thick cloud. I forgot it was a travel day and that Canadians would be in our country and on our roads, making driving difficult, which can also be said of New Yorkers, and also those from New Jersey. They should just stay home and enjoy their holidays in their own country/state. I had to stop and get something to eat because I was feeling nauseous, so I also took a percocet because it’s hard to tell if I am feeling sick from not eating or withdrawal, so I addressed both. I tossed back my chocolate milk and rolled into the parking lot at The Cancer Institute, realizing I would need to pick up my parking pass tomorrow for this lot for my treatments. I scurried into the building, looking like I rolled out of bed and fell into the door because I was trying to dress in things with no metal so I wouldn’t have to change into a gown. Nope, that didn’t work. I soon realized I had to go in the main entrance, and I meandered down to the radiology department, the same place that had tried to empty the cyst for the last year. I was the only one there, so I was personally escorted to the MRI room. I filled out my questionnaire about all of my surgeries and tests and radiations and chemos and skin pokings and jabbings and big giant incisions and medications and answered some math word problems about trains and wrote a short essay on what I did on my winter holiday. I signed releases I didn’t read. Then I was escorted to the changing area. It was pretty much the same deal as going through radiation, except there are no animal themed changing rooms and no waiting corral. I did get a locker for my stuff, and I actually had two gowns that covered me, instead of feeling like I always had to close some area that was exposing skin.
In typical fashion, I needed to repeat my name and birth date about 3,129 times. I had to show them my tattoos – MRI tip – an MRI will cause certain inks in tattoos to swell/itch because some inks have metal particles in them, particularly bright, vibrant colors. It’s not the best idea to get a tattoo right before you get an MRI. The technician asked me if I wanted some music during the procedure, and I said sure, but you probably have nothing I listen to – and to my surprise, she said give me the names and I will use Pandora. So I rattled off some of my faves: OWTH, Against Me!, The Go Set, Pennywise, Alkaline Trio, excited that I wasn’t going to be forced to endure One Direction, or Creed, or worse, Nickelback,
We entered the MRI room and to my surprise, the MRI machine is not so different from a CT scanner. However, there is the obvious lack of decorative stickers. I pointed this out immediately, and suggested some Brave, or Jungle Book, but no Toy Story 3, because I am still traumatized from that one. The tech said she’d check but they probably cant because of the risk of metallic particles.
Curiously enough, the room itself has a background hum that sounds like the womb sounds that my Sleep Sheep makes, which would have been soothing if not for their loudness. Unlike the CT meat slicing machine, the MRI tunnel is entered feet first. I had to get an IV started because there would be contrast dye for this one. They put some boards and blankets on my belly, and start the IV, which actually hurts at first. I told her to choose my right arm, because I was saving the left for chemo on Tuesday. Chemo tip – always go for the left arm. You will get a lot of fluids and will spend an inordinate amount of time in the bathroom – you want that right arm unencumbered. We got the IV issue worked out and that arm got strapped down. I was given a emergency call bell in case I started to freak out for the other hand. Then they put my headphones on, and I get launched into the tube. It’s a pretty small space, and I am a pretty fluffy girl. I had wiggle room but not much. The music started to play, and amusingly, the first song is an Alkaline Trio song, Blue in the Face, which ends with the line, your coffin or mine? I found this so amusing but being that I had to remain still I was not allowed to chuckle. The MRI imaging is done in time limited sessions. 45 seconds, 1.5 minutes, and then 2, 4, 5, 6, and (2) 8 minutes. Then the dye is injected, and you do 2 more 2 minute and 4 minutes sessions, and then (4) 18 second images images holding your breath. The instructions to hold your breath are supposed to come through the headphones – the tech broke into the music to tell me to follow along, except the instructions were in spanish, and she then had to just tell me what to do each time.
The actual imaging sessions are noisy. I was doing okay though, because I had music. Curiously, even though I had given her the names of the bands for Pandora, I got mostly Alkaline Trio and the Menzingers, and no OWTH for the first session – there was some Taking Back Sunday and some AFI – but no OWTH or Against Me!. This was tolerable initially, and I shouldn’t complain, because it could have been worse, like noted above, Nickelback, or even, ~shudder~ Macklemore or Pitbull. When the tech came in to start the dye, I asked her to restart Pandora with OWTH and the other requested bands – I got one OWTH song, and then it went right back to the Menzingers – weirdest thing ever, I wonder why that is? Anyway, the last sessions were the most difficult to stay still during because the machine was literally rattling. And your body gets really hot. Like it’s cooking. But I did really well keeping still, I turned on my meditative brains and pretended that I was a corpse. Of course, then runaway brain came along and I started to think about what it would be like to be buried alive, and this is as close as I hope to ever come to it. Then I started to think about all the poor people who were buried alive and what that must have been like to wake up in a box underground and be trying to claw your way out, and then the terrible realization that this is it, and you are trapped and never getting out. I then realized that I need to modify my living will to specifically state that under no circumstance whatsoever am I to be buried, or placed in any boxes unless my heart has been removed from my body or my head severed. That freaked me out. I realized then that the only suitable way to die would be drowning and then eaten by fish. Fear of being buried alive moved to my number 2 fear. Clowns were downgraded. Fire is still at the top. Again, drowning would be the only acceptable way to go.
Returning to our discussion track, there’s a lot of noise during an MRI. Banging and whirring and swishing and thunking. I did okay with most of it, the music minimized it but it still all seems to be going on by your ears, instead of where they are taking pictures. At one point it felt like the hair on my legs was being magnetized Totally bizarre feeling. It’s not constant. It starts and stops, and they tell you through the headphones when the next imaging will start and how long it will last. I only got caught off guard once with the loud banging, and fortunately, since you are in a restricted space, you can’t really jump out of your skin. I kept referring to my meditation practice and controlled my breathing the best I could, trying to relax. This is an important tip for those having an MRI. Work on your breathing. When it was all said and done, and I got to sit up, my whole body was stiff from staying still for so long. Even though the actual imaging session are short, the whole process lasted about 1.5 hours. Keeping still is a lot more work than you would think it is. As I mentioned, I asked the tech what she saw, but I also asked her why they do MRIs on a Sunday. She said they have to staff the MRI 24/7, and since someone has to be there all the time, they decided to make use of those hours by scheduling outpatient scans so they use the time effectively. There are a lot of emergency and rush procedures during the week, and it’s really stressful. Weekends are more laid back, there’s no tension and it can accommodate both staff who want to work only weekends and patients who need an urgent but not immediate scan, or people who can’t take time during the week. My tech said she actually prefers being there and doing procedures on the weekend. I have to say, it is a much more pleasant experience for the patient too because you aren’t jammed into a room of sick people to wait and you don’t feel rushed and everyone seems more calm and relaxed. There’s also better parking and fewer people in the buildings. After I regained my sense of stability, I was given my key to my locker and changed into my clothes and then scurried (IE. Walked slowly and stiffly) to reward myself with a chestnut praline latte at the hospital’s Starbucks. Twas yummy.
I took a longer scenic route back home – I had planned on going to dinner with my sharksister, Ashley, but she came down with the flu or plague or west nile last night, and we had to cancel. I was disappointed because I was really looking forward to seeing her, but we’ll have time, I have 4 months of appointments yet. We were going to go to Pho Miss Saigon in Hershey – a super yummy pho/noodle house – I still don’t have much of an appetite, but I was looking forward to Vietnamese iced coffee, which is my most favorite. If you frequent the Hershey area, I highly recommend the spot, particularly if you like pho or noodle dishes. It was still quite foggy as I headed home and was dark, so more stupid people than usual were about to hinder my ride home. Tomorrow is doctor and blood work day, and laundry. Weirdly, I need to make sure that I have a fresh blanket and sheets on my bed for after chemo – because of the whole weird smells thing, I need to have things as fresh as possible the first few days. Andy is also going to need to clean the car and quit smoking in it, because the odor of cigarettes is the one scent that makes me want to immediately hurl once I start chemo. At least I know what to expect. I also don’t have to have the nasty neulasta shot, at least not initially, so that’s a huge plus. That shit is the worst part in my opinion – the pain in your bones is as horrible as the pufferfish. I’ll have to get a picture tomorrow while I still have my hair…I figure it will be gone by the beginning of February I’ve started work on a fox hat, and I have patterns for a raccoon, panda and queen crown.
So that was the MRI. To summarize, much like being buried alive but without the bugs or dirt or paralyzing fear. Also much noisier. Not for the claustrophobic. In other news, I facebook blasted that my cancer is back – it may seem like an attempt to get attention to some, or putting “my business out there” but you know what, I don’t really care. People are naturally inquisitive – they want to know – and I don’t think this is something I need to keep private. It’s scary and people are curious. If I make it easier for someone else, all the better. With that ma petites, I shall leave you for today. I’m gonna finish my cocktail, and tuck myself in. Hopefully I’ll have more details tomorrow. Sweetest dreams my friends, and like I said on facebook, send me your good vibes, positive thoughts, prayers, animal sacrifices or good juju, I can feel it and it helps.
And don’t be afraid to ask me questions – it doesn’t bother me a bit.
Return, Resolutions, Repeat
I’m back….
That’s right, my lovelies – I did not run over any armadillos, I did not get a cat, I did not mix vodka with orange juice, I did not become a brain eating zombie, I managed to stay awake for at least one hour a day, I resolved to clean the house when absolutely necessary (which it never truly was), I did not use a drone to attack the neighbors, I ate no cauliflower, I checked my phone once a day, and I never told facebook what city I live in, no matter how many times it asked. 10 Resolutions made, 10 completed. Completing such daunting tasks gives me such a sense of satisfaction. I don’t know that I can top this in 2015, but damn it, what’s live without challenge?
I’ll get to this year’s resolutions in a moment. I really want to give the real ending to the attack on the cyst, because I couldn’t before I told my dad (aka pop) the facts – I didn’t want to ruin the holiday for him or for my niece – I mean I had to ruin it for Andy and some of my brothers, co-workers and friends, and of course, it was a bit of a downer for me too, but I couldn’t do it to my dad. I think I’ve told most people, if I haven’t and this is where you get the news first, I’m sorry. It’s not the thing you get any enjoyment out of telling people and one thing I’ve learned is that no matter how many people I tell, there’s always going to be someone that I forgot to. I can think of five or ten or fifteen now. Fact is, I’m tired of telling people. Here’s a fact: Telling people you have cancer (again) is fucking hard. You feel bad that your are giving people bad news, you feel you have to make them feel better, they always ask how they can help and it’s just generally a bad thing. If I tell you, just tell me that you love me. Or if you don’t love me, just say, hey, whatever you need. I’ll keep talking if I feel like talking about it, and if I don’t keep talking about it, and you have questions, ask me. I have a blog, seriously, it’s not like this shit is secret.
Anyhow, I read the CT scan before the surgery. I saw the words “possible malignancy” – I saw the look on the ER doctors face when he had to tell me there were some concerning items on the scan. I know my body. I knew something was wrong. After surgery, when Minion 1 arrived, and I asked her about the offending nodule and if they found cancer, she danced around it, saying that they “don’t think” anything is wrong, but they are only using human eyes. I much preferred the way I found out the first time – the resident held my hand and said it straight up, we can’t confirm it yet, but from the preliminary pathology, it looks like cancer. This time, I knew I was going to hear not very good news at my appointment. I know when they take a biopsy, they look at the sample to make sure it’s a good one. They don’t just randomly snap out a bit of tissue and hope for the best. And while they are checking, they can notice whether they have good cells or abnormal cells. Sure, they may not know if it’s malignant with certainty, but they know if something’s up or not. Minion 1 needs to work on her delivery. I should give lessons.
I also knew I wasn’t healing as quickly as I have in the past. I had some pretty hideous bruising. I lost my appetite. I knew things were different, but I wanted to believe what the Minion 1 told me. So when I got to my appointment on the 22nd, I was ready for the news, or at least I thought so. I went by myself because Andy was in Pittsburgh with my nephew and brothers for a Steelers game. I didn’t want him to not have fun because I had an appointment. I asked my niece’s mom to go with me last minute, but she couldn’t. So I just resigned myself to going it alone. I got there on time, checked in, and waited. I got weighed, and found out I’d lost 40lbs since October. That’s a lot. And then I waited. My blood pressure was almost normal, but there was much excitement by the nurse when I told her I was off the morphine and just taking percocet. I wasn’t in pain. That’s good. Yay. No need to undress. Hang out, Dr. will be in. Now, Dr. K is a presence. He’s a tall, funny guy, with a southern twang to his voice and he’s always cracking jokes with nurses and staff and patients. I suppose you have to when you have to give the news he’s giving. He’s almost never late. I can sometimes hear him talking to other patients when I wait for him. Today I can hear him telling one that they will beat this thing, and that they will be in to review the chemo and radiation schedule with her, etc, etc, etc. Not good. It’s still taking a while for him to see me. I wonder where my treatment coordinator is – I have presents for her and Nurse Sue and Dr. K – just little holiday gifts to say thanks. I don’t hear Anne outside either – not good. Finally, Dr. K arrives with Minion 2 from the ER nightmare. They sit down. Sit. That doesn’t usually happen, so yes, it’s another harbinger of doom. Dr. K looks at me and doesn’t mess around – the biopsy shows cancer, and launches into how we could treat it. No surgery, no radiation, two different ways to address it with chemo, there’s no protocol for cancer in this area, quite frankly he doesn’t even know how or why it came back, it shouldn’t have at this point, once you pass two years, there’s a much less likelihood of recurrence. I just kinda look at him, and tell him I don’t have dying on my agenda. He said that’s good because he hasn’t, and isn’t, giving me permission to die. I’m not crying, I’m almost relieved because now I know – I awkwardly hand him the card and ornament I brought him – tell him I don’t know if he Jewish, or celebrates Kwanza or Christmas, but he can hang the ornament on his Hanukkah bush if he wants to – and thank him for taking such good care of me. I can tell this is as hard on him as it is for me. I think the Minion 2 wants to bolt, but is glad I am not crying and that I am, matter-of-factly, addressing what I need to do. Dr. K tells him to talk to me about the MRI, since he hasn’t staged it yet, and needs the MRI to determine what all is happening in the dark recesses of where the stupid pufferfish lies. I tell him I think the unwieldy beast is starting its dark resurgence because I’m having some discomfort in the area, and he says that’s what he wants to see on the MRI. Minion 2 has ceased sweating, I truly believe he thought I would lose it like I did when they offered my the psych hold in the ER. I maintained calm. OK, I was in shock, but it still didn’t involve crying.
You are never really prepared for the news. I’m still not sure I have accepted it, and probably won’t until they hang the poison bag on the rack and it starts dripping into my arm. Dr. K and I hug, he assures me that we will kick cancer’s ass and be laughing about this in no time. He tells me this is a shitty way to end the year, and a shitty way to start a new one, but go home, enjoy the holiday, and they will call me with the chemo schedule the day after Christmas. I tell him I trust him, he got me through it the last time and will this time. I shake the Minion 2’s hand, and like a scared bunny, he hands me the packet of papers for checkout and flees the room. I head to checkout. As I stand there, alone, having just been told my body has betrayed me, it hits me, and I tear up. I have cancer. Fuck. The receptionist asks me about the papers – I tell her all I know is I have a 4 week appointment on the 5th, and Dr. K wants me to have an MRI. She asks if it is scheduled – I tell her I don’t know – I was just handed papers by the Minion 2. She looks, and doesn’t have a clue why I have been handed all of Dr. K’s results and notes. I suddenly realize I need a note for work, and another prescription for percocet. I ask if she can get that for me when she asks him about the other papers. She does – he tells me I’m off until after my 4 week check up. I realize we never even looked at the incisions. Good thing I heal OK. She comes back with all my papers – I ask her if she can give Anne and Sue my cards and ornaments. She will. I’m still not really connecting to any of this. I get my appointment for the MRI and visit summary and head for the elevators.
I don’t break down until I am in the car. Then I am a snotty, sobbing, weeping, sniveling, snorting, coughing, choking mess for about five minutes. And alone. Horribly alone. And also very glad to be alone because I don’t have to worry about making anyone else feel better about my breakdown. I text who I need to text. I need to get groceries while I am down here. It’s funny how the trauma and the mundane activities intersect here. I need to get food. I also need to get home. I start the car and go to Giant, and mindlessly wheel the cart up and down the aisles, tossing shit in I don’t really need, but I have a fuck-it-you-only-live-once attitude and decide we’re having a fucking rib roast and ask at the butcher counter for a small incredibly expensive rib roast. Two hundred dollars later, I’m checking out of Giant with my rib roast. I forget to buy water. I’m not even hungry. I need to go home and that’s the last place I want to be. My iPod won’t fucking charge. I’m not going home until I have the opportunity to sing loudly with my iPod, and preferably with OWTH, until the pain inside is purged. I must also see my friend, Pony-Pony. I need some normality in this surreal scene. I also need gas. Actually, GAS first.
So I drive – first to a gas station. I fuel up and head to the MHS barn to see Pony-Pony. He’s not there. They probably are making him be the stupid donkey is some live nativity somewhere. I keep driving. I see my friends, the goats, at the goat barn, and I yell “fuck you” at the sheep in their pasture. My iPod is still not charged. I see some cows. I see another pony, and another, none of which are Pony-Pony, but at least I saw them. I keep driving. I realize my blood sugar is quite low, and I am a little shaky – I’ll got to Hardee’s. This whole time I feel like I am in weird freaky film where my character is in a dream world unbeknownst to everyone who sees her. It’s like none of this is real. I finally get the iPod charged enough to commence screamsinging. Fortunately, RTE 322 is not busy and I can cry and sing and drive all at once with no worries. It’s not real. It’s not real. I get to Hardee’s and order some sort of burger and onion rings. I manage to choke down the onion rings. I head home.
The drive was cathartic. And pretty scary. Occasionally I would look down at the speedometer during pauses between songs. I pushed 100+mph more than a few times. It’s not really my fault the car goes that fast. I slowed down several times. I wanted to get home and then I didn’t. I would have to tell Andy and then other people. This is the part that sucks. I finally drove home – I walked in and Andy was all excited to tell me about his trip and the game – and I killed that with a look. He asked how the visit went and I lost it. I sobbed and cried and told him how sorry I was he had to go through this all again. My kid is a good hugger. He told me I was the strongest person he knew and it was just cancer, and I could beat it. Then he proceeded to hug me some more. When he was adequately covered in snot, he went and got the groceries from the car. I didn’t want my expensive rib roast being stolen in this neighborhood
The C-monster is such a fucking burden. Not only do you have to worry about being sick, but you have to worry about bills and work, and the house and telling people and not upsetting people all while being told that this is the time you are supposed to focus on yourself. If there are people who are able to do that, I wish they would have a network where you could find out their secret. Because once you recover from the shock, you have to think about who to tell, and when and where and how and how are they gonna react and if they are old, like my dad, are you going to kill them? And then there’s the logistics – appointments and chemo and food and laundry and the joys of all the changes in smell and touch and taste. And when you have been the head of household for the last 24 years, that just doesn’t stop, you still worry about that. It’s just a lot. And no matter how much you have people tell you they will do whatever they can to help you, you don’t want to ask, because you don’t want to be a burden, and you want to be strong and tackle this yourself.
I’m tired of writing tonight, and I am tired of watching this fucking pathetic Steelers game while I type. I’m tired of being sick and doctor’s appointments, and not wanting to get out of bed. At least there’s minimal pain. At least there’s plenty of food in our house and we have functioning utilities. I can still write. My bed is comfy. I have a new blanket to take to chemo with me. It’s all gonna be over in 18 weeks (it better be). Tomorrow is the MRI – it will be a whole new experience for me, so look forward to that blog entry. I sure hope there’s no metal inside that suddenly gets torn from my body like I’ve seen in horror movies.
Good night my happy people…I’ll be keeping you updated – hug on your loved ones and do something fun with them before they can’t, or you can’t. Sleep well. Oh, about those resolutions, still working on them. I won’t be bound by your constrictive linear timetables. Kisses.
Oh yeah – three years ago yesterday, I got my first diagnosis. Happy Anniversary. I didn’t know the 3rd anniversary was also cancer.
Slice and Dice With Minions – Part Dos
Ah my friends, I have returned, later than planned, but back nonetheless. It’s early morn on Christmas eve, and I am still a little amped up from crafting like a loon as if I could ever finish everything I want to before Christmas day. As we know I am a grasshopper in all things. I did however, finish a project for the tree I have moved from project box to project box for two years now, so I’m kinda stoked. Now the tree just has to go up. Again, another attempt to get Christmas right gone awry because of the stupid pufferfish — which leads us to today’s entry where the minion encounters the pufferfish for herself in the operation remove and apparently realizes that I wasn’t kidding about the torture it was inflicting on me.
When last I wrote, I left you with a cliffhanger about how I was going to see Dr. K on Monday to discuss the future of pufferfish residing in its pouch. I hope you googled pouch of Douglas so you can visualize the pain I endured from leaving the ER and enduring the rest of the week lying on my side because it was no longer possible to sit or stand for very long after that no good horrible very bad day. Monday arrives and Andy drives me to my appointment. LONGEST hour of my life. Every bump stung. We could not get there fast enough. I am sure Andy was doing at least 80 but it felt like 40mph, and every stupid person who could possibly be on the road was on in front of us slowing us down. I get to the appointment. Dr. K is running late. I can’t sit. It hurts too much, so I am standing and pacing and squirming and just generally miserable. Did I mention by this time I have also run out of percocet? Yes, well I was out on Saturday. I have seriously pondered removing this thing myself. FINALLY my name is called. I jump on the scale, and guess what? I am down 30lbs. Since October. Being unable to eat has its benefits. Onto the exam room.
Again, no one is taking my pain as seriously as I am, even when I tell the nice nurse I am at an 8, pushing a 9 on the 1-10 pain scale. I am lying down on my side on the exam table, my blood pressure is “going to pop a blood vessel” level. I am rocking and crying and waiting for Dr. K. He will save me. He arrives. I blubber about how this is now unbearable and I cannot go on, this monster has to come out. He nods and says, yes, I agree. Finally!!! Someone is taking me seriously. He’s gong to get me on the surgery schedule for tomorrow. YAY!!! And even though this means I cannot have anything to eat or drink from now until after I am gutted, I am elated. I would not eat for weeks if it meant I was going to have some relief. Whatever it takes, I tell him, just get it out of me. I pause in my blubbering to complain about his new associate and the minions and how they wanted to keep me overnight on psych hold and how his associate should never ever use the words sympathize and/or empathize ever again because she is clueless about what my pain was like and it came off as cold and uncaring, and they sent me home in the exact same pain I arrived in. And also, please let them know I know the difference between “the pufferfish is trying to assassinate me” and “constipation”. So there.
I meet with the necessary folks to get all my surgical ducks in a row and get some sodas and water from the kind nurse Sue. She’s the best. They will call me with a time for the surgery tomorrow. No more eating and no drinking anything after midnight. Fine, what ever, just give me another ‘script for the happy opiates and I’m on my way. Oh wait, you need to go to anesthesia. No, not them, Dr. Doogie will say I have a heart murmur again. Damn. Okay fine. Whatever it takes to be released from my bonds of pain.
I go find Andy in the parking lot and give him the news. Now we have a dilemma. Do I go home, an hour away and usually 20 degrees colder than Hershey with a winter storm pending, and risk having to drive at a super early hour to the hospital in snowstorm, or do I stay in Hershey? It seems logical I stay here. I have clothes in the car since the ER trip. I have friends I could call and stay with, but with a storm swirling off the coast, I don’t want to inconvenience anyone, so I decided to book a room. I get one at the Simmons Motel which I will plug here as a very nice, quaint, clean and comfy room and a 50’s feel and a super soft bed. And quiet except for the damn train. But I am getting derailed. (see what I did there?) In the meantime, Andy makes arrangements for his friend Tom to pick me up and get me to the hospital in the morning so he doesn’t have to come down and just sit around all day. Now some may say it’s odd that I don’t want anyone with me – but frankly, it’s easier to be by yourself, in my opinion, you don’t have to make anyone feel OK, and comfort them. You can just get shit take care of. We go hang out with Tom for a while, I get my pain under control with some medication, and head back to anesthesia. I meet with the goofy anesthesiology associate – I think you have to be a bit odd to work in that department or working in that department makes you a bit odd, because she asks me this litany of questions but doesn’t put down the answers as I tell her as I find out later. She asks me about my “heart murmur” and I ask her to keep reading so she can see that I had an expensive EKG after that diagnosis, and that there was no heart murmur. Her response? Oh, right I see that now. Then she asks me about my anemia following my surgery. I tell her continue reading, so she can see that I lost a ridiculous amount of blood from my tumor and that once I got some blood bags hooked up, anemia gone. Again, Oh right, I can see that. Then she asks me about my thyroid. Again. I tell her to read ahead, and again, she sees the answer I was going to give her. It takes forever. I want out . I just want to go to the hotel and sleep until I get the call. Let me go. Please. Finally, she leaves and the Dr. comes in. She checks to see that I am still breathing and I still have a heart. I sign the papers. I get to leave. I go to the hotel and check in and send Andy on his way. All is going to well, see you in two days. We hug, and give the usually mother/son affection. I tell him, no worries not gonna die.
I find that my surgery is scheduled for noon. Oh good, I could have gone home – but hell, the room was only $50, I don’t have to worry about being tempted by food or drink because I have none, and I can just lie there, in an opiate haze and do my bowel prep. Those of you with previous abdominal area surgeries or in the medical profession will understand that this means a lot of time running back and forth to the bathroom, typically in the middle of the night. I drift in an out of pain riddled sleep, literally counting the hours until I will be rid of this nightmare inside. I finally doze off for a few solid hours until BOOM. The medication for the bowel prep sends me running to the bathroom. Now the fun starts for the next 4 hours. I get through night, and though I’d like to remain in this super soft and comfy bed, I have to go. Tom comes and picks me up and takes me to the hospital around 10, because he is squeezing me in between work, and I wait. Counting. I am all checked in and they tell me a volunteer will come get me when I need to go to the surgical wing. I am stoked because I can then get a wheelchair ride instead of having to make that long walk. I connect to the free wifi, and get down to the business of saving baby pandas from the mean dragon. I will save you baby pandas.
Noon. Gee, all the volunteers have gone home, so here’s a map and off you go to same-day surgery, ma’am. What? I have to take myself? No wheelchair. Walk? Oh fine, and I head off. (please make no mistake, I love Hershey Med Center, they are awesome and I would not go elsewhere for my health care) I get to the elevators when I encounter on of the Sons of Anarchy Pennsylvania motorcycle club members. I can tell this by his hoodie, that reads “Sons Of Anarchy – Pennsylvania.” He has a pager. He must be a MD too. Why else would he have a pager, being in a biker club? He notices my Spamalot t shirt I am wearing from the musical. He shares with me that Spamalot is one of his favorite musicals too. If only I wasn’t about to have surgery, I may have just met my soul mate, a biker who loves musical and is clearly a doctor to boot! But as my luck would have it, after we exit the elevator on the surgical wing, he turns left and I go right, and our potential love affair is over. Sigh.
At the unit, I am escorted to my prep area and given a gown and some special washing clothes to prepare. The nurse shows me the chart and tells me how to wipe down for surgery and says when it comes to doing my back, ring for her and she will do it for me. I do that and a different nurse comes back to help. I tell her what I need, and she says to open the last package, place the pad against the wall and rub up and down against it like a bear scratching its back on a tree. I look at her surprised, about to question her, but still ready to follow her instructions, when she says, “just kidding”. I laugh with her and said that I guess they have to get their fun anyway they can, and she said she was gonna see if I was going to do it, but she decided against it. I told her had she not stopped me I probably would. I hope on the bed and entangle myself in my blankets and listen to an Anxious and Angry episode on my iPod I guess my laughing to myself troubled the nurse and one comes to hang out with me and get all my vitals and shit. She hangs out for a while, and finally I am ready for the big surgery, when they ask where my ride home is. I said I am not going home til tomorrow, and she’s all – well it says here that you are going home after surgery – I look at her and say, uh no. That’s not what the Dr. said. She leaves to go get that worked out. Time check. 2:20PM. Technically I am supposed to be in the ER in ten minutes. She comes back to assure me that I am indeed staying overnight and informs me that surgery is running about 45 minutes late. I tell her it’s cool, I was a last minute add on, and as long as the pufferfish is dealt with, I will wait. I pick a movie to watch on Netflix and wait.
3:45. Still waiting. Me and another woman are the only people left in this holding area. She’s crying and whimpering, and I am am just happy that gutting will occur. 4:30. I’m on my way. Next stop the OR. I tell the operating room nurses that they better keep Dr. K focused and don’t let him mess around, I want be in and out and in recovery before the Season Finale of SOA at 10pm, so no dilly-dallying around in there. They assure me they will keep in him in line and before you know it, I am waking up in the recovery room to another nurse asking me if I want ginger ale. And this Mennonite lady in a rocking chair smiling at me. I wasn’t sure what was going on at first and then I slipped into full awareness once I noticed there was no pain. JELLO!!! I could have JELLO!!! It’s JELLO heaven. I immediately order up a few orange jellos and some water and eat like I haven’t eaten in days. Oh wait I haven’t eaten in days. I inhale the JELLO and begin to keep the nurses and the nice Mennonite lady in stitches with my sense of humor until they determine I can go to secondary recovery down the hall. The doctor will see me then. My “sister” Paige calls me and we chit chat for a bit as the anesthesia wears off. I assure her I am fine, and think about getting more jello. The little boy in bed across from me belongs to the Mennonite woman, and needs to go to the NICU, but there’s a problem getting enough people to help transport him – I tell my nurse she can go help, I have things under control, I’ll be fine. She is about to do when word comes down, I’m off to the next stage of recover and away we go. At this point I realize I still have a catheter. I am not please by this. I ask for its immediate removal. Denied.
I get settled in my room. I have some sort of inflatable bed. It’s very comfy. I have the special massaging boots I love so much on, and my phone. Rudolph the Red-Nosed Reindeer is about to start and I can have all the Jello I want, and when I am ready, even a sandwich. I make sure I am not dead, because it seems like heaven. Especially the no pain part. No pain. Did I mention NO MORE PAIN. I get a new nurse. Like all of the nurses, she is super nice. She tells me I am staying there all night as there’s been some sort of influx of patients on the Women’s Health wing and there’s no room for me there. I see all kinds of people walking the halls – they aren’t stuck with a catheter. I ask again for mine to come out. Wish Granted. I am even allowed out of bed. I get up and head to the bathroom, just for fun. I have no pain. I am so happy I can’t even explain. I jump back in bed, watch the final episode of SOA, call Andy and eventually get my sandwich. I take several trips to the bath room, roam the halls for a while and finally fall asleep around 2 am. I still have no pain. If I didn’t know better, I’d say I’m still not awake and this is all a dream.
I get up around 6 when the female minion arrives. I remind her that in the ER she said she said she would not be gutting me. I ask her what happened in the ER, because none of the nurses knew the exact details. She tells me that they went in, it was hard to get to, they just drained it and did a bunch of biopsies. I ask about the C monster due to the what I read in the CT scan and she tells me that they are pretty positive that things were normal, but they won’t know until the reports come back, because you can’t tell those things with human eyes. I ask where Dr. K is. She tells me they will be back between 8 and 9 to discharge me. At this point I am starting to think he called it in, and let her do the surgery because I didn’t see him before surgery or in recovery and now he’s sent her in here and I am not even sure he didn’t go back to Disneyland. But I’ll wait to see.
I alert Andy to come fetch me. I am starting to have pain from surgery but not pufferfish brutality. I am told to wean of the perocet first and then the morphine. I get up and head to the bathroom to produce enough pee to be allowed to go home. After succeeding in that area, I am provided with a delightful breakfast of eggs with salsa. I can’t really eat, but I try. The nice nurse who was with me through the night tells me that Dr. K and the minion aren’t coming back but I can go home. I find this odd, and now I am sure he is just a figment of my imagination, but I am going home. I get freed from all of the IV tubes and machines and dress to go home. Run to the bathroom again. When I get back Andy has arrived. I am free to go. Still no pain. It’s a early December miracle. The minion comes back with my note for work, and a pretty prescription for percocet and I am turned out into the cold. Andy and I head home, after stopping for chinese and a chocolate croissant. I am cured.
This brings us to today. The pufferfish remains. He is still under the watchful eye of Dr. K and my close monitoring of my body. There are more tests to be run, but I remain pain free. I am weaned off the morphine (yay) – I have no debilitating pain – I had my one week check up – wounds are healing very slowly, and there was a lot of bruising inside and out. My incision did not start spouting fluid like they did during the last surgery. I can eat a little and sleep a lot. I have lost 40lbs now. Things are looking okay, but I cannot go back to work until the 6th after my 4 week check up and I can’t lift things. This means no holiday baking, not decorating, and only doing things that require sitting or lying down. I drove the car to the Dr. yesterday – I am still recovering from that, but the bottom line is I am recovering and will be able to enjoy the holiday with NO PAIN.
And that my friends, it the second part of the story. I will relay the story of my one week check up at a later date, but it involves minion 2 (the male one). It’s time now for me to return to watching White Christmas and sleeping. Have an awesome holiday and be sure to savor every minute you are with those you love. Eat, drink and be merry. I know I will be when I am gnawing on the bone of my rib roast on Thursday. Tomorrow (actually today) is the annual family Christmas eve dinner. Pictures will be forthcoming and I bought a special surprise that will bring joy to the hearts of many and make the family photo spectacular. I will share that debacle with you all later. Merry Christmakwanzakuh. I hope it’s all you wish for an more.
The Minions Meet Pufferfish…The Beginning.
Well, well, well, I’m back to write. I bet you’ve been wondering if you’d ever hear from me again. It’s been a long haul. I’ve been tempted to write a million times, but when you are on morphine 24 hours a day, you tend to lose interest in things you love, and/or lack the enthusiasm to finish things you start. It was like being in a fuzzy cloud, and one that didn’t feel all that awesome. I knew what was going on, could function, but sometimes my brain stopped dead, and I couldn’t remember what I was doing, or what I wanted to do. What was harder still, is because you “appear” normal, albeit somewhat slower than usual, people don’t quite grasp that you aren’t yourself in any way. Unfortunately, after the horrible experience in September, in which we attempted once again to thwart the pufferfish with drainage, that ultimately backfired and cause me unprecedented pain, I had to try and manage the pain in any way I could.
Until I couldn’t.
Some of you know what happened next, some of you don’t, and for those of you who are new to my blog, this is the true story of a girl and her pufferfish. And the tiny blue pills. And tears, lots of tears. It may be a two or three parter – I have a lot to write about and this morning I’ve decided I am not taking any more morphine, and just going to try to finish my withdrawal from opiates by weaning of the percocet instead – but that’s for the end of the story, and I’m jumping ahead.
It was the week of thanksgiving. I had to leave work early on Monday after court because I couldn’t even sit down – I was on the phone with an agency provider discussing a family and I was in such brutally punishing pain I wanted to scream, drop the phone, and run from the building. As she’s telling me about her concerns I’m fighting back the tears, and trying to get the attention of one of my coworkers to ask her if she could please take me home because I am not going to make it through the day unless I drug myself to sleep. Finally I just said, I’m sorry, I have to end this call, I’ll call you tomorrow and with the kindness of Momma Y, I made it to the sanctuary of my bed and sweet narcotic sleep. I made it through Tuesday, and Wednesday ended up being a ½ day snow day, so I had four days to try and recover. I spent all of thanksgiving in bed. I was supposed to go to my sister-in-laws, but I was suffering and it was best done alone and not in the company of others. My brother brought me food – I ate about two pieces of turkey and a few forkfuls of stuffing and spent most of my time in my bed asleep. On Monday, despite the lingering pain, I tried to convince myself I could go to work. I got up, dressed nicely, and headed off to the office. I made it until lunch time. I lined up some people to cover my on-call, (thank you Amanda and Kaylee, I know you probably don’t read this, but thank you anyway). I called the Dr.’s office that afternoon and they assured me my pain was likely constipation from the narcotics. I disagreed, but I agreed to follow their instructions. Without being totally graphic, it involved taking things to make my body expel waste. It mostly worked, but did nothing to alleviate my pain – it made me feel a little better at first, but that was short lived. I had to stay close to the bathroom – until things seemed to shut down completely. I mean stopped dead. I thought my body had just said no more.
Now it’s Wednesday morning. I wake Andy and tell him I need to go to the ER. We get in the car and I endure the horrific hour-long ride to Hershey. I could have gone to a local ER, but since all of my records are at Hershey and I trust them more, I suffered the trip. Luckily the ER is empty. The triage nurse takes my vitals, and we head off to an exam room – and as we turn the corner, we walk smack into a small group of hospital staff in haz-mat suits who will not allow us to go further – yes, haz-mat suits. They redirect us and the nurse assures me it’s just an Ebola drill, not really an Ebola outbreak but all joking aside, the way I was feeling, if expelling my internal organs in a bloody heap would stop the pain, I was down for it! We round the next corner, and bam! – more haz-mat suited peeps. No entrance. We reroute yet again and finally I am permitted to enter an exam room. The doc comes in, I tell the long sordid story of how I ended up here and my stupid ass pufferfish and tell them my pain is at an 8 after taking 15mg of morphine 3x a day and at least 4 percocet in the last six hours. He orders a CT scan and some dilaudid. Yay for dilaudid. Yay for CT scans. Yay for someone taking me seriously.
Now is when the story starts to get amusing/sad/disconcerting. I’m waiting for a CT scan. A new nurse comes in, a new doctor, another nurse, and every time I have to tell the story of how I came to be in the ER starting with my hysterscopy, hysterectomy and the c-monster treatment. I wait and wait for the CT scan. In the meantime, I get an IV started, and they ask me for a urine sample. I can’t pee. I haven’t drank anything in hours, and frankly, the last few weeks, I can’t pee on demand without pain and a short walk around the house first. So guess what I get? Yep! Catheter. And sad to say, I was perfectly okay with that because I was in so much pain, that couldn’t be much worse. Well apparently it is. But whatever, I am just glad I am in the hospital and they will make me well.
Finally, I’m off to radiology. I get a CT with contrast dye in a cool machine with Minion stickers. I am glad that Hershey understands the importance of stickers on the CT machine. It makes it so much more relaxing. The staff are great, they always joke with me and help take the edge off. Then it’s back to the room. Dr. #1 eventually comes back and tells me that gynecological oncology is looking at the film as there are some concerning developments and they will be over to talk to me because I may be admitted for surgery to day. Nervous at the word “concerning” but relieved that I am not crazy and relieved that there are changes in pufferfish, and that I am not just imagining it, I nod in understanding. It’s okay, the dilaudid is still working, and I’m sure I am going to find relief.
Understand that my doctor, Dr. K, has elected to take his family on vacation this week, so he is not privy to these developments, but they assure me his associate Dr. F will be over to talk to me. The door opens – enter two gynecological oncology minions – and no Dr. F. I ask if I will be gutted today – they say not likely, and proceed to examine me – they ask about my pain, and my use of colace and senna and what’s going on. I ask them about the CT scan – they say they didn’t really see too much of difference, the pufferfish is only “marginally” bigger and there’s a nodule now growing inside, and the fluid is clouding and not clear like it was, but they think it’s just because pufferfish ate the hematoma outside of it. I’m dying of thirst. I’m crying again trying to tell the story and explain my pain. They look at my stomach and notice some (old) bruises. I explain that I pushed again the banister trying eliminate the pain in my stomach, and could have possibly caused them. I also bump into the top of the banister frequently as well, which inevitably leaves a bruise. I am fat, I have a huge belly, I sometimes don’t negotiate well in the middle of the night when I am trying to get to the bathroom. They seem appalled at this. I don’t get it, but they assure me, they will be back shortly with Dr. F. They will have a plan. They are pretty sure I am going home today. They scurry out.
At this point, it’s noon. Andy has been patiently sitting with me, but he has to work tonight, so I try to get someone to come bring me home if I am not going to be admitted, so he can go home and get some sleep. When the minions and Dr. F don’t return by noon, dear sweet Paige agrees to fetch me home and I dismiss Andy. I am alone. Waiting. It’s now 5 hours in the ER. I continue to wait.
Enter Dr. F and the posse. She’s very nice. The dilaudid has worn off and no one asks about by pain level anymore. I can only lie on my side, but I roll onto my back for another exam. Dr. F talks about the CT scan – she says if I was her patient, she’d remove the pufferfish, but she has to wait for Dr. K to come back because I’m not her patient. Great. She uses words like sympathize and empathize and I tell her she has no clue what I am feeling because unless she has had chronic pain herself, she has absolutely no understanding. I need this thing out of me. It is causing me crushing pain, which she proceeds to dismiss as constipation, and tells me I just need to follow the colace/senna regimen for a few more days and it will go away, because my pain is now the result of massive amounts of narcotics, not the pufferfish. I disagree – it may be compounded by it, but it’s the pufferfish, it’s in my fucking body and I know what is hurting me. Then comes the most ridiculous part of the tale – she says her bigger concern is the bruising on my belly. She is concerned that I am trying hurt myself and tells me that she herself gets a little crazy with road rage from time to time and that she will be happy to allow me to stay overnight if I feel the need to be safe and talk to someone. Meltdown mode initiated. Eyeroll commences. I try not to react inappropriately, and through my tears, I tell her I do not need a mental health hold, I need someone to stop the pain. She says, no, no, she doesn’t think I have mental health issues, but just that she is afraid I am doing dangerous things to hurt myself because I can’t cope. I tell her that is insane. I was just trying to help relieve the pressure for a few minutes, because I couldn’t make the pain stop, even with all my pain meds. I don’t need to talk to someone about my pain or how my pain feels. It hurts and talking to someone about it, will not lessen it, extracting the pufferfish will. Thank you very much for thinking I am on the edge of a mental break down, but make my pain stop. She then proceeds to tell me that there’s really nothing they can do, so go home, keep taking pills, and come back and see Dr. K on Monday for my scheduled appointment. Really? 8 hours in the ER, and your response is, head on home and come back on Monday. Unless you want to spend a night on the psych ward, because sure, that’s gonna help. They will do nothing to help manage the pain, but they will help you talk about it. My response, no thank you, I will just go home and cry myself to sleep. Dr. F tells me she has ordered a suppository to help with the swelling in my rectal area. I ask if this will stop the pain – she says it might. Might. Yay. That’s fucking awesome. Another hour waiting for the suppository. 9 hours. I feel not one iota better than when I came in, in fact, I feel demoralized, frustrated, and now, starving. ER Fail.
It doesn’t get better. I go to the hospital cafeteria. I spy the special tandoori chicken wrap. Of course, it’s sold out. Why wouldn’t it be? Curry makes me feel better, so of course there isn’t anything curry flavored to help me. I choose a veggie brie and mushroom sandwich. The lady at that station is mostly ignoring me. Finally she acknowledges me and allows me to purchase some food. It’s cold. So now I have to figure out hot to warm it up. I find a microwave and make it lukewarm. I inhale it because I am starving and suck down a green juice. Sated, I head off to the lobby to await Paige’s arrival. Fortunately for me, there are screaming children in the lobby as well. And potential clients. I only want to go home. Home. I want to take a handful of pills and sleep. Please.Let.Me.Sleep. I could have had just as much success with treating my pain at home as I did here. Children continue screaming. Fucking hurray.
Paige arrives to rescue me and bring me home. I pass Andy on his way out to work, fill him in.
I can’t go back to work – I can’t sit or stand or lie on my back or stomach. I can lie on my side. Until that side goes numb and then I flip. Moving causes pain. Walking causes pain. Eating causes pain. Breathing does not cause pain, but allows me to remain alive, which causes pain. And my mind is still chewing at the fact that the only thing that was offered to help manage this pain was a psych hold.
The days pass waiting until Monday. Monday I see Dr. K. Monday Dr. K will fix me. I drift in and out of painful sleep, spend too much time in the bathroom in futile efforts and spend an equal amount of time rocking myself back and forth trying to make the pain stop.
Of course, this part of the story wouldn’t be quite complete without me sharing the fact that I also can see my CT scan as part of my health record. I can also read the summary. I see the words “potential malignancy” “node” “marginally larger”. Previously, pufferfriend was 10X11X9cm and today, it is 12X12X10cm. In one month. Now, yes, it seems like that’s not much, I mean it’s centimeters. Pufferfish is located in the pouch of Douglas (here’s where you google where that is). There’s this ancient torture device called the pear of anguish. It used to be inserted into the vagina or anus of the victim and then it was opened internally, mutilating them while causing unimaginable pain. It would be slowly increased in diameter to rip you apart from the inside (again, use your google skills for the detail) An 1 or 2 cm increase in the size of the pufferfish = 100 or 200% increase in pain. It’s no wonder that the morphine isn’t even touching this. It’s an internal wedge between my bladder and rectum and it’s making everything else compact so that it can take up the space. Fuck you “marginal” increase – it wouldn’t be so marginal inside of your uterine cavity or if someone started ramming a giant tree branch inside of you that just kept getting wider and wider. It’s like having a baby grow inside in a very wrong area, and without a reward at the end of nine months. I’ve had this thing longer than I carried Andy, I’ve had it longer than I had cancer treatment, I’ve had it too long. It must come out.
At this point my friends, I will pause and leave you hanging for the rest of the story. I don’t want to write a novel as an entry, and this shit’s already three pages long. I will tell you that things have improved somewhat, and will return with details tomorrow, because I know, you can’t even imagine not knowing the intimate details of what happens next. It’s no Sons of Anarchy finale, but if you like medical dramas, it’s all about that, both medical and dramatic. So enjoy chapter one, my friends, and I will return with my next installment tomorrow.
Patience My Pretties, I’ll Be Back.
Never fear, I haven’t abandoned you. I have tales to tell – it’s just been a bit of celebration and whirlwind of things happening since the pufferfish was deflated again and I was enjoying the last six painless weeks, with nary the need for pain medication. That said, I’m a tad down at the moment, and needed to write the following, and though I thought I’d keep it private, hell, why not share, I mean, you’re already familiar with my former uterus.
Stay with me dear ones, I will be back to keep you spellbound with happier tales than what follows. But today, I am sad.
Joey,
I can’t remember the last time I wrote you one of these letters that I couldn’t send if I wanted to, but the sadness that lingers at the end of summer when the days are perfect but growing shorter reminds me of you. And it may be coincidence, but I keep seeing things that remind me you’re gone but still hanging around, if that makes any sense at all. I miss you. I miss having one person who knew the darkest side of me and one person who understood my innocent joy. I think of what it must have been like in the last moments you were here and if you knew you were about to leave or if you made that choice. Everything changed when you were gone.
It doesn’t seem like there’s a day here when I don’t think about you. And in my mind’s eye, we’re 20-somethings with not a care in the world, scheming, and whether we’d seen each other the day before or months apart, the world was ours when we were together. And in my mind’s eye, I remember every detail of the day it crashed around me.
I wish I could mail this letter to you like I did so many others – tear stained, or gleeful, excited, full of wonder, sharing every detail of my broken hearts and plans for the future – fat envelopes, stuffed and sticker-covered and keeping me connected to you despite thousands of mile and minutes. Stories of new adventures and days I wanted to close my eyes and have it all be over.
I know it’s a matter of time until we find our paths crossing again. I thought it could be in this lifetime, but probably the next. Just know I’ve never forgotten you my friend. And I am still mad you left me, but I understand that it was time for you to go. I just wish I could have one more hour to put my head on your shoulder and cry until you were covered in snot and slobber, and have you take the hurt away for little while. Fucker.
Me
Two Days Ago, This Had a Witty Title.
While I was hanging out in recovery on Friday afternoon, I was coming up with witty titles for my thoughts post-mining. I had several. I don’t remember any. Sorry. I feel like I leave you all down when I can’t be funny. I let me down too, because no one cracks me up like me! I am quite hilarious, the nurses found the giraffe joke much funnier than Andy did while we were at the hospital.
First, let me say that in rereading my blog entries recently, I have noticed numerous typos. I hope they have not been very distressing. I do read and edit this babble before I post it. I know it seems chaotic and free-form and sometimes not even funny, but I do edit. Not very well though as evidenced by my recent writing. And down goes another career path…”editor” now lies in the heap with “famous ballerina” and “badger rancher”. Please continue reading despite the poor grammar and editing.
Second, this post will be tinged with the sorrow of tomorrow’s lost snow day. My last hope for a snow day has been dashed by the local news. It appears it will not be more than nuisance snow, with super duper frigid temperatures to go with it. What that means it I will be forced to return to wearing boots and being uncomfortable all day. So, if the weather is reading this, here’s how it’s gonna go, you will either provide snow days, or get spring going, I’m tired of having to go out and about in boots for no other reason than to prevent frostbite.
Now that I’ve addressed those issues, let’s talk about how Friday went at Hershey Medical Center. I arrived early, got ushered into a holding area, and then hustled along to the Radiological Procedure Area in the basement. First observation – the regular radiology area is not as attractive as the radiological oncology area. No fish. A fun little TV area for the kiddies. But no awesome wall of fish. There’s no cell reception in there. Wifi is free though. Andy and I both left our cell chargers in the car so the phones died fairly quickly. Turn the paperwork in, wait a bit and we are off to our procedure area. I get to have the one right in front of nurses station. They don’t know what a treat they are in for! I get into my gown and hop on the bed. Jabbing and stabbing starts. IV in one hand, poor arm trapped in those vicious blood pressure machine, but at least they give you warm blankets. Finally all the necessary numbers are recorded and I am freed from the multiple hands everywhere making sure I am human. It’s time to wait. Oh good! There’s a clock directly in front of me! I can watch every anxious minute pass by. I take some pictures and post them on facebook, and try to think of a way that I can get the nurses to let me have the cool stuffed bird at their station. And watch the clock. Watch the flippin’ clock. Then a new nurse comes to take me to the cell where they will jam that needle and probe into my side and go on adventure…but I won’t care, I’ll be enjoying sweet, sweet, sweet moderate sedation.
Moderate sedation does not mean what I thought it meant.
I ride on my bed through the halls into a room with a ct scanner in it. It better have stickers. I get parked against the wall. The resident who will be assisting tries to pronounce my name and butchers it. I joke about it. My nurse jokes about it. Resident seems nervous, and when he says “I’m going to listen to your heart and lungs”, I reply “I’m pretty sure I still have them”, he doesn’t get it. Then he asks if I understand what this procedure is. Sure do, you’re going to put me to sleep, and then, like testing the doneness of a cake, you will spear me with a needle, find the pufferfish, stab and grab it, and tell me whether or not the C-Monster has been reborn. That’s when I see his terror – no, says Dr. M.. there’s actually 4 scenarios: 1. We can’t get to it because it’s in there too deep. 2. We get to it and find out it’s an infected mass and we have to put in a drainage tube. 3. We get in, get samples and get out. 4. We get in, we get samples, we drain fluid, and get out. All could go horribly wrong and you could bleed or get sick or worse. K? Oh, and you are only getting moderate sedation – you’ll get a local anesthetic, some stuff that makes you feel like you had two or three drinks, but you will be awake the whole time. Holy shit, two or three drinks? Doesn’t he know I have an affection for hotvodkacocoas? With pain meds. I’m gonna feel every little poke. Good dog, how am I going to survive this? I try not to show fear.
Kind nurse #1 helps me get on the CT table. I guess I have to have a scan first. Makes sense. I note the lack of stickers. KN#1 tells me not to fear, the stickers are inside. I tell them that’s good because I would have to make a formal request like I did in radiological oncology. I don’t do CT scanners without stickers. Wait? What is this? I have to lie on my side. Interesting. Then they start to prep me for the event. What? I stay on the scanner the whole time? Hmm. I get oxygen, more IVs, needles, and finally large velcro straps to keep me on the table. Apparently I will be sliding in and out of the machine throughout the procedure, like some sort of amusement park ride. And I will be AWAKE. Did I mention I will be awake? Yes AWAKE.
My plethora of tubes, wires, and monitor leads keep getting yanked about as I pop up and down in the machine like a whack-a-mole machine on its side. We finally get it right and I hear the Dr. getting started. And then I FEEL IT. Because, as I mentioned, I AM NOT ASLEEP. Not that I don’t try to fall asleep – I keep closing my eyes and trying to nap, so that I am not focused on the bizarre feeling of this snaking needle meandering through my lower abdomen on its way to Location: FPF. I FEEL it find Pufferfish. I FEEL IT attack it, grab some meaty goodness and head for the exit. THREE TIMES. Okay, it hurts less than a tattoo, or childbirth or playing chicken with a lit cigarette, but it still hurts is a weird achy way. And not a good way either. Back to popping up and down in the machine. I hear the words “we’re almost done”.
Key word: ALMOST. I was about to breathe a sign of relief. Except, that was when the sharp pointy stabbing thing went back in with a tube to drain some fluid. More achy weirdness. More sliding in and out, up and down, and the promise that I am about free. I ask the KN#2, well, what’s the deal? Good, bad, don’t know? Her cautious reply is that the Dr will be in to talk to me in recovery, and usually it’s a week to ten days until there’s anything back from the pathology lab. Being quite lucid after the procedure since the medication to relax me didn’t exactly relax me, I realize that before I was strapped in, they told me that there was a pathology lab right there that would look at the samples when they were extracted to make sure they had good samples. Oh well, I will wait for the doctor.
I crawl off the machine and onto the rolling bed and back to my curtain. I try to sleep for a bit before they page Andy to come back. He really like that part. Here’s your pager son, we will page you when your mom is in recovery. So off he went to get a coffee and have some breakfast. I can’t sleep. I’m restless. It’s 11:30. They page Andy. He comes back and I get lunch. No jello. Just applesauce and a turkey sandwich and some Oreo cookie snacks. A healthy lunch. And water, I haven’t had anything to drink since 1am. Phones are mostly dead. He won’t let me watch TV. Won’t let me since the Chitty Chitty Bang Bang song. Or the Barney Song. Or You Are My Sunshine. Or the Wake Up Song (I wrote that one) Or the Carpenter’s song about birds appearing. So apparently I am not allowed to sing. So what do I do for fun? I die. Not really, just that my leads came off the monitor and it just looked like I was dead to the nurses. Who looked up and saw I was not really dead before they got those shocking paddles ready. That’s when they took away my monitoring devices so I couldn’t hold my breath while wildly wiggling my finger to make it look like I stopped breathing while my pulse was erratic on the monitor anymore. So now all I could do was swing the unattached monitor lead on my index finger around and around until the doctor got there.
Apparently, the Dr. is not coming. He usually doesn’t see the patients after the procedure unless there were complications, and I had none. I’ll find out from Dr. K. next week. Now, I’m not dumb. You always get good news right away. When I have to wait, I pretty much know it’s not a happy thing. They did drain fluid from the Pufferfish. I can feel the difference. I know I should think positive thoughts – I am – maybe not the kind you are expecting – but I am thinking I am glad I have such excellent medical care and an exceptional medical team, who I trust, and if it is malignant, at least it’s been being monitored and it’s far less serious than the last go round, and I made it through this whole nightmare once, I can do it again. Since I am not going to see a Dr., they have decided that I can be dismissed, sadly, because they have enjoyed the entertainment I have provided. Andy has been told that he can take me without supervision to the car in a wheelchair. I must not walk. They do not tell him that he must not crash the wheelchair but they do tell him no strenuous activity and I am not to shovel snow every again. In my life. Ever. Never. Don’t even think about it. (This is not medically mandated, but I like their thinking.)
I get dressed and then get in the wheelchair. Andy was a pretty decent driver. When I yelled FASTER! He complied. While waiting for the elevator he spun me around until I was dizzy. He effectively wove in and out of the slow moving people in the hospital’s main corridor, and didn’t park me outside in the cold while he got the car. I would recommend his services in this area highly. Finally I was in the car, gobbling up a loaf of Irish Soda Bread, and wistfully looking forward to the day in bed and my snow day on Monday. The snow day I am now being robbed of.
And I had a witty title already for when I wrote this entry. But it’s two days later and I’m two days closer to knowing what comes next. I hate having my life on hold. I hate it even more than being denied a snow day and still having to wear boots. I still need to go to the store even though I don’t need milk and bread now. I would like a coffee too. So it’s off to rip off the band-aid from my wound, and head into the real world. Frightening though it may be.
That’s all for now. I’ll be back sometime this week to reveal the outcome. But before I go, I almost forgot – the stickers inside the CT machine? They were from Finding Nemo. And the one directly in my line of sight? A Pufferfish. Coincidence? I think not.
Funny foot ghosts
Stuffie just out of my grasp
peckalicious 