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.
17 December 15 | Categories: c-monster, Philosophizings, Picture Perfect, Profound Insights, Uncategorized | Tags: adventures, blood, cancer, christmas, cyst, endometrial cancer, flying monkeys, food, Off With Their Heads, pufferfish, road trip, tumor | Leave a comment
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.
4 November 15 | Categories: c-monster, Philosophizings, Profound Insights, Random Rambling, Soapbox | Tags: annoyances, benefit, cancer, cyst, depression, doctors, endometrial cancer, flying monkeys, food, fun, happy, malignancy, mass, music, Off With Their Heads, pufferfish, side effects, surgery | Leave a comment
Well happy people, it’s my birthday month. It’s also time for seasonal affective disorderr to rear its ugly head. The time of year when everything dies and I feel the urge to sing along with Morrissey and Elliott Smith. But surprisingly, increasing my antidepressant seems to have stayed the invasion of winter blackness for now. I tried taking my new dose for a few days, and it made my head feel all scrambly, so I decided I will alternate every other day, one old pill and one new pill. What, you say? How dare I disregard my physician’s instructions? I do it all the time – I know my body and brain better than any doctor, especially my brain, and it says I’m doing what I need to. Although it also was nice that my new palliative care doctor agreed with my method of medication administration.
Oh yeah, you want to know how that went, right? Surprisingly well. I really like the Dr. – she reminded me very much of my good friend Jess, with her manor and her tone, and I felt very comfortable. She was also very cool about my morbid sense of humor, and asked all the right questions without being intrusive. She is going to get me hooked up with a counselor who I can vent to on a semi-regular basis who will listen without trying to make me feel better and who will not give me “sad face” or pat my fucking arm. This is very comforting. We talked about end of life planning, what I should look for in terms of my disease taking a downturn, living wills, and what would be “my line in the sand” in terms of when I would say enough with treatment, and again, it’s quality over quantity. Her office will be the one I call for pain meds and if any new symptoms come up, or I want to discuss options for care. I got all the paperwork to make Andy my power of attorney and provide a living will – I hesitated to fill it out at first because I wanted to make sure he was okay with making those decisions. I don’t know who else I could trust with them – I don’t know how many people would honor what I want without question. Andy said he’s fine with it. All I know is that I don’t want to be come mean and miserable and trapped in a hospital bed to die. If I have no control like I did when they forced Dana inside and drilled a hole in my kidney, that’s one thing, but if there are options, I want to be in control of when and how I leave this particular life cycle. My biggest fear is to find myself unable to say “turn those fucking machines off’” and being a human vegetable. Okay, my biggest fear is being buried alive with clowns, but that’s my second fear.
I’m feeling better lately. I had a few days of a being a bit out of it after my flu shot. My joints are achy today, but I don’t know if it’s because of the flu shot or because I was cleaning in my lame, not a lot of energy way. I managed to clean a 4′ x 3′ area today, and do a load of laundry. I am getting better at throwing things away. You can’t even begin to understand what it’s like to have to think about holidays in the context of will I even be around to use this next year? Or things that I was saving for one reason or another, I now look at and say there’s really no reason to hang on to this anymore. It’s liberating and sad at the same time. Don’t get me wrong, I’m not miserable over it – it’s just thoughts and emotions and they are all just temporary. Just like not that long ago I didn’t even want to be awake, and I just kept reminding myself I only needed to get through today, until the blackness receded and I got my ass out of bed and started moving again. All I am hoping now is that: 1. They pull this tube on Tuesday and 2. That when they pull it I don’t end up in bed for 2 or 3 days like the last torture session. The benefit is on Saturday and I still have some straightening up to do, and jello shots to make. The California girls get here Friday, and then the fun starts. We’re going to Shady Maple on Saturday for breakfast before the benefit because those silly Mennonites don’t work on Sundays and they’re closed. Good times. Maybe this time I can get a stuffed black mamba or maybe a vampire deer for my collection. Hmmm, Paige is getting my scary baby collection after I’m dead, I wonder who have’ll dibs on the stuffed animal predator collection. I know Andy doesn’t really want a stuffed komodo dragon or wild african dog.
I try really hard when I am around people who give me sad face not to talk death. The problem is that it’s constantly on my mind. With that said, it’s not like it’s all doom and gloom and I’ve accepted that outcome as final and non-negotiable. I think anything is possible – I think about my stupid pufferfish every day and visualize it growing smaller and smaller and picture it vanishing. I think about how the human body is an amazing self-healing machine and if it’s meant to be, I’ll be around as long as it’s necessary to learn whatever I was supposed to learn in this life. There are no real certainties with this disease. I mean nothing was worse after cyst drainage – things actually improved with the departure of Dana and the impending tube removal. Yet you don’t ever stop thinking about what is happening in your body and trying to figure out was this something that you brought on yourself, or is it just one of life’s lessons. You start trying to figure out why this is happening to you. It’s such a rollercoaster and right now it’s like I am standing in line for my next go round.
Then there are the multitude of questions – am I doing enough? Should I get a third opinion? Maybe I should stop eating bacon and candy (gasp). More fruits. Veggies. Get back on my tea regimen. While I was checking in at the Cancer Institute the other day, there was a sweet old lady behind me who asked me about my OWTH hoodie – as we started talking we both discovered we were patients of Dr. K and both adored him. We started talking about second opinions and how it felt like we’d be cheating on Dr. K if we got one, but that people around us encouraged us too. She has had ovarian cancer for over 5 years – and it was nice to talk to someone who has a very similar stupid disease. We went our separate ways, she off to do blood work, and me, off to my appointment. I have to say I am not as fond of the new offices as I was of the old. Maybe because there are people with all sorts of cancers in the waiting room of the new offices, and some of them are very clearly very sick, and it reminds me of what is to come. I don’t want to be that person. It makes me uncomfortable. It also makes me glad that Dr. J left Hershey before I found out about the recurrence. I am glad he never needed to know that the cancer was back, and he got to leave thinking I was cancer free. Although I wonder if Dr. K ever mentioned it to him, since they were friends.
I know I am just rambling now. I want so badly to go to sleep but I had a bit of a row with Andy earlier and of course it was right before I was to fall asleep. Naturally, I got fired up and sleep wasn’t going to be coming anytime soon. Of course, he’s upstairs snoring, and I am down here trying to get my brain from firing on all cylinders so I too can snooze. I am both excited and stressed about the benefit on Saturday, and then the next week is my birthday. Of course, I want it to be a fun filled day, because I don’t know if there’ll be another one – in my gut I believe there will be, but I don’t want to wait to celebrate until I find out. I know this all sounds sort of sad, but trust me, I really am in mostly a good headspace right now – these are all just thoughts that I am stuck with every day, and they no longer are good or bad, just are. On the good news front though, Ranae’s mom had a pet scan and has no new cancer and can stop chemo – which is fabulous news. When I told Andy, he said, well let’s hope you’re next. Let’s hope. Today is one of those days where I feel I can face anything that is ahead. I appreciate these days because I know the other days when I feel like the floor has dropped out beneath me rip out my soul. If there’s one thing this fucking miserable disease does, it teaches you that there is a very broad spectrum of emotions and states of mind out there, and it will make you feel each and every one of them.
Okay, finally I feel like I can lie back down and curl up to sleep. So far the evil Tamoxifen is not giving me too much trouble with hot flashes. While I still get them, I believe the increased Effexor is keeping them in check. I still play the blanket game every night, and I still wake up damp with sweat every morning, but it’s not so bad during the day. The one thing I really hate about Tamoxifen is that it make my boobs bigger than they are. I really miss my perfect B cup boobs from the time before Andy. I hate slinging these things around, tucking them in to bras and then releasing them like Kraken when I get home and can take the boob harness off. But again, I should watch what I say before they become a source of pain and anxiety.
And now I must depart for my bed. I’ve finally watched all of Season 3 of Hemlock Grove, which just left me anxious for the next season and now I will have to wait for what seems like forever. So now I just watch reruns of last season’s Vikings and hope the new season starts soon. I’m still making pumpkin hats and making some cards tomorrow, and going to finish coffinizing the babies tomorrow. I’ve only got 8 more to go. I forgot how many I really had. Lots of babies. I did notice that one of my babies is missing her rat and another his bloody cleaver. And when I went to take them out of the storage bin, some of them had taken their shoes off. I wonder what was going on in there. I hope no one tries to steal one of them at the benefit – I’ll have to cut off their hands. I also thought about offering my gargoyle collection for table decorations – I forget how many creepy things I collect. So scurry off now, and enjoy your night or day, or afternoon, as will I – and keep sending the good vibes. And for those of you who send me cards, please continue – I love getting them in the mail, and they always seem to come at a time when I need them most – especially the ones from Jeanne. I’m sure I’ll be back later this week before this benefit to tell you all about how I was brutalized and made to cry by the kidney people when they go in after my tube. This time I’ll be taking the oxycodone with me. Delightful dreams my friend and happy adventures. Peace.
2 November 15 | Categories: c-monster, Philosophizings, Profound Insights, Random Rambling | Tags: afterlife, anxiety, benefit, c-monster, cancer, cards, carnivorous kangaroo, chemo, cyst, death, depression, endometrial cancer, flying monkeys, fun, kidney, medication, pain, pufferfish, sleep, uterine cancer | Leave a comment
I once asked to be tested to see if I was bipolar. Alas, I am not. I know it’s not a really cool thing to be, but I was just hoping for a rational explanation for my occasional bursts of mania. Like today. However, I believe that it must be the result of getting sufficient sleep and upping my effexor. I’ve been super weepy the last few weeks, probably because I wasn’t sleeping, and under a lot of physical duress, but the last three nights have been heavenly.
With that little intro, let’s dive right in to the Dr. appt on Monday. The new course of treatment is to alternate Tamoxifen with Megase. We all know how I feel about Tamoxifen, (and why I am procrastinating in taking it today) and Megase promises to be a joy too. So I am two weeks on Tamoxifen, then two weeks on Megase and then switch back. Both are going to fuck with my endocrine system, and Megase has the added bonus of weight gain, which is just what I need. I suppose it’s a decent trade off for a healthy holiday season. I got the vibe from Dr. K that he recommended that I do this treatment first before we consider infusion because it may be the last healthy Christmas I have, so why fuck it up. I’m okay with that. It was a good appointment, and I made it clear that I would prefer in the future to have my cyst drained first before we start shoving tubes into my bladder and kidney. He said his job is to keep my kidney healthy – I said I get that, but please, lets avoid the catheter forever. This visit’s minion med student was cute, she kept apologizing for the fact that cancer and the catheter/nephrostemy killed my plans for Riot Fest and The Fest, and made me miss the Bouncing Souls and Leftover Crack. I told her she was not responsible, but she kept apologizing anyway. Even when I almost ripped her head off when she said “so I understand you refused chemo before, are you willing to consider it now?” and I had to again explain I never refused anything, I simply asked for a delay if it wasn’t going to exacerbate things. Poor child. I was still sleep deprived at the time so I think she thought I was about to tear into her throat and rip out her artery. Anyway, I made her laugh and then she stopped being scared. I go back in January at which time we look at the next step. As for the pufferfish, I know it’s busy attempting to get back to its monster size, I can feel twinges and jabs, but I still have complete use of my bladder, so I’m down with sucking up the pain. And I want this tube out of my back in six days, so I will do what it takes. There were no scans this time, because they will do a scan when they yank the tube – unfortunately they aren’t like the cyst draining radiologists who show me the pictures live and all the goop they drained out. Dr. K found my excitement with seeing all that shit hysterical.
For those of you who have never dealt with chronic pain, you don’t really get what constant pain does to you physically and mentally. It keeps you in a heightened state of stress. Your body never really relaxes. My jaw is constantly clenched. Medicating it only does so much. You find a good position and you don’t want to move so you stay as still as possible. You do a lot of sucking in your breath and hissing. My situation is accented by the hole in my back that is constantly trying to close itself even though the tube is preventing it. And let’s not forget the promise of painful terror that’s on my mind when I think about them trying to remove it. Because they are going to lie to me and say they will give me a local to block the pain. And I will half heartedly believe it until they make me scream and leap of the table. It’s a game we play, the radiologists and I. Let’s hope it’s the last time.
I’m in a pretty good mood. I am super excited that my California friends will be arriving in a little more than a week. I have missed them every day I have been gone. It’s going to be quite the reunion. I’m keeping my drinking to a minimum though, because I want to keep these kidneys healthy and happy so it’s gonna be all about the water for the next two months. I see palliative care today at 1:30. I will probably not be the happiest I could be when I get back, but it’s a gorgeous rainy day, and I am going to enjoy the drive because I love how the rain makes the tree bark black against the last of the fall leaves. And fog, there will be fog. It also means idiot drivers, but I don’t think they take my blood pressure today so there should be no freak outs in the Dr’s office. When I went in on Monday, my initial blood pressure was 177/100. I told them to take it later and it was 138/80, which it was clear that it was high because of idiots on the road. After that, I am going to hit the nice wal-mart in Palmyra today because I need a few things. And I also want to stop and score some whoopie pies for Ranae because apparently someone’s band found the ones she had in the freezer. I have to get some for the California girls too, so they can take them back with them. By the way, according to the scale at the Dr. office, I lost 17 lbs since last month – it was probably a lot more but my two week binge of drinking a half-gallon of chocolate milk a day put some back on. Still that’s a lot of weight – just another 20lb and I’ll weigh what I did when Andy was born. Then only another hundred until I am back at pre-pregnancy weight. I’ve decided it’s time to lose the skinny clothes, because at this point, the likelihood of ever squishing back into my plaid pants is slim. I even went as far as getting garbage bags to put them in. But then that burst of housecleaning energy went out and I decided to blog.
Sorry this is so mundane today, but I’ll take it. I’d like some normal days. I’d like some time when I don’t feel any pressure. And once this tube is out of my fucking back I think I might even schedule a weekend away so I can go swim again in an indoor pool. You have no idea how the knowledge that I may never swim again, or take a bath or enjoy a hot tub was weighing on my mind. It’s one thing when cancer kills your goals and dreams by stealing your time, but it’s a whole other ballgame when it steals the little things too – like walking and swimming. This disease is such a huge mind fuck…the psychological destruction is really overwhelming. When you start to lose options in your life, the things you have left become all that much more important.
One thing I did want to rant about today is more about Andy than me. People tell Andy to be strong. That he has to be strong. He doesn’t. He has to be Andy. I will be strong for me. Andy can be strong for himself if he wants to be, or not. It hurts me that people have made him feel like this is his battle too – he is strong, but he’s also human, and he feels fear and uncertainty like the rest of us. Those are valid emotions and he needs to know it’s okay to have them, and to sometimes be okay with being terrified. Telling either one of us to be strong is bullshit. Both of us need to be able to be who we need to be to get through this shit. Everyone has that right. You get out of bed in the morning and you do what it takes to get through the day. Some days are good and some are bad. A week ago, I didn’t want to even get out of bed. But I said “just get through today.” until I could get out of bed without having to be my own cheerleader. It’s not about strength, it’s about will, and being able to stay in the present moment. I do what I have to. When I decided I no longer need to do it, I won’t. As I have said before, it breaks my heart that my kid isn’t able to enjoy being a 20 something because I am sick. I know the weight of having a parent with cancer, as I lost my mom at 27. I wish I could save him from all of this.
That said it seems to be time for me to hit the shower and head out to Hershey. Maybe I will post again later after the visit or maybe I will be too upset to do it, who knows? But I suppose I need to take that stupid Tamoxifen too. Have a good day monkeys, and give someone you love a hug. Or someone you like. It is #hugitouthumpday after all. Peace.
28 October 15 | Categories: c-monster, Philosophizings, Profound Insights, Random Rambling | Tags: alcohol, cancer, chemo, chemotherapy, endometrial cancer, flying monkeys, friends, happy, hospital, pain, treatment, uterine cancer, whining | Leave a comment
Well here it is, Tuesday. I feel like I have slept most of this month away. I am up and awake now, before 10 am, out of bed, which is crazy, because the only reason I was getting out of bed before 10 am for the last three weeks was for dr. appointments and to puke. It feels strange and wonderful, and shaky. I’m craving a mint hot chocolate, but today is shower day, which I can’t take until Andy is awake to do a new bandage on my back.
So what’s new in my world? Lots and nothing. I’ve been down with the sickness pretty much every day. I feel better one day, and think I can actually be social and do things, and then someone is unknowingly carrying a rare virus that is usually defeated quickly by your immune system until it gets to me, and then hello, it’s a human with very little resistance, let’s dance. I am sure I’ve endured the black death the last few days, and probably some extinct pox. I’ve puked more in the last 30 days that I have in my whole entire life. And that’s with using appropriate nausea control techniques. And the things I have puked in and on are countless! Plus let’s not forget that tube in my back that gives me an added thrill every time my automatic nervous system spasms. It’s good times.
The tube in my kidney. What a pleasure source that bad boy is! I did get a mini-reprieve with it, though. When I went in for my tube change, I laid down my case for why it should come out, and almost won. But using logic, my plan was confounded. We agreed to leave a tube in, capping it off, sans the pee bag, for two weeks – if my kidney goes back to doing it’s job without complaint, then they will pull it. In the meantime, I’ve discovered the sweet spot on my hip where I need to place my hand when I need to cough, sneeze or breathe deeply, so I am not thwarted by pain.
But let’s talk about pain. Last Wednesday, I went in to interventional radiology to have the tube change done. I took a couple oxy and some medicinal herbiage before the ride so I’d be more comfortable when I got there. I was. Then they promised me some more medicine, when they did the procedure. Unlike the draining of the cyst, I don’t believe they give you any medication to help you be drowsy. No, they are very kind to you, promising pain relief until they wheel your ass in the procedure room. Then they tell you to get on your stomach, put your arms above your head and trust they will not hurt you. They lie. First they start poking you in the back with needles they claim are local anesthetics. Just a pinch they say. Just a pinch. Just a pinch of the claw of giant crustacean tearing into your flesh like it intends to eat you. I stay surprisingly still for the first two shots. Then the third hits a nerve or something and I elevate three feet from the table and mutter “ouch”. I think the team realizes that they might have hurt me. Now, I am shaking from the pain, and it’s freezing in there, so I shake for the rest of the procedure. They took out the old tubing and put a smaller less cumbersome tube apparatus in there. They did a really good job with the bandage. I get to roll back on my back and go to recovery. I’ve done really well they tell me. I just want to go home. They must have given me fentynal at some point because I’m mostly not in pain now. I get dressed and they even let me walk up to meet Andy.
I was hungry. I wanted one of those turkey and cranberry sandwiches from Panera. I went in with Andy at first, but realized I needed to be back in the car, so I gave him my order and went outside. He brought out the goods and I ate a cookie and some lemonade. I thought I was going to be fine. Just not really hungry. The sandwich could wait. Then the meds started to wear off. I didn’t bring any with me. In the next ten minutes, my pain went from 2 to 2.4 trillion. Every inch from my waist to my neck on the right side of my body was a fucking minefield of pain. I do not exaggerate when I say that speaking hurt me. Breathing hurt. Coughing was some primitive torture activity. I couldn’t cry, I couldn’t talk, I could only whimper like I was hit by a car and left alongside the road to die. I wanted to die. I wanted fucking morphine.
Finally we go home, I thought I was going to be okay. Then I tried to get out of the car and walk into the house. Every fucking step was a new adventure in torment. I got in the house, and faced the steps where my safe bed and vial of oxy were waiting for me just a few hundred steps away. And every step found me crying and moaning and doubting that I would ever get to the bed. But I did. I shoved some oxy in my mouth, and advil, and tried to smoke but couldn’t really inhale. Then I tried to lie down. That was not easy. I literally had to throw myself down on my right side and not move from that position. I told Andy if I didn’t get some relief in an hour, that we would need to call an ambulance. I was having really bad pain in my chest and back and I was scared it was serious. But I also tore cartilage in my chest before and it often would be painful if I was in a position that pulled at it again, so it could have also been that. I was hoping it was that. I nodded off for an hour and when I woke, I wasn’t in as much pain, so that was good. I was still paralyzed and unable to move, but I was no longer in fear of imminent death. Another four hours of sleep and I was almost able to move. By morning, I could actually sit up. A few more hours, and I could walk. Things were improving.
I couldn’t make my appointment with palliative care. Reschedule. I didn’t have the strength or the energy. I had to blow off the Bouncing Souls show that I was so looking forward to. I shouldn’t complain, my kidney was working and I could move and most of the time, breathe. I was still having trouble coughing and sneezing. Then the black wave of depression crept into the space where pain had been hanging out in my brain, and down, down, down, way fucking down, we went. If you don’t have depression, you can’t understand. I try to make it as visual for the untainted as I can, and this was like the La Brea tar pits of depression and I was a fucking woolly mammoth. It was all over except for suffocation. That sucking quicksand of sorrow ate me up, and the crying started. Without belaboring the incessant crying and snot-blowing, let’s just say thoughts during the breakdown run from “I’ve failed as a mother, and Andy will hate me for the rest of his life” to “what the fuck have I done with my life?” to “I’ll never get that PhD, great work dumbass.” Until you really spend a lot of time reflecting on your life and the possibility of a very short future, you can never understand that level of sorrow or failure. People can tell you otherwise for hours, but you can tear any positive self image down to smoldering ash in a matter of minutes when you start to consider things that will most likely never happen because there’s just not enough time. I’m just now starting to realize the psychological impact this disease has on me. I keep it together most days, but when this shit crumbles, it goes down hard and and fast.
I hate to keep harping on this but I feel I have to remind people that I write this to sort through what is in my head more than anything else. If the details of this fucking monster inside me helps someone else, I am thrilled, but writing is always for me. I love that people read it, I love that people comment on it, but I love the way I feel drained and empty when I stop writing, like all the shit that swirls in my head has finally been released or at least organized. Writing also scares me – when I see what I have only been thinking appear on the page it’s like tearing off a scab and wondering if it is ever going to stop bleeding. How raw this gets depends on how much pain I am in when I write – and sometimes I hold back because I can’t face another entry that is just all about my grief, and I know I shouldn’t. I can’t – because there’s no where else I can go with this. I know there are therapists, and I know I have friends, but let’s be honest here, very few people pour out what is really inside to anyone else, because we all want to keep our pain, our shame, our fears hidden. If you don’t, I admire you – I know I have secrets no one will ever know.
So now it’s evening – I went out for a bit today in the car. Visited work until I started to feel nauseous and then took a ride and spent some time in a cemetery until I felt better. Then I drove and cried and screamed and came home exhausted. Smoked my nausea away, and hoped for sleep, but no, my feet are twitchy and my legs are restless and so is my brain. Part of it is knowing that next Monday we’ll be talking treatment and progression (or hopefully, lack of progression) of this stupid C-monster and the damn pufferfish. And as many of you know, my friends are hosting a benefit for me on November 7th here. Some of my oldest and dearest friends from California are flying in and I am thrilled – it’s going to be amazing to see them all again. And I am sure many of my dear friends that live here will also be there and I am so blessed and grateful that they are doing this for me, but there’s a huge part of me that realized just now that it’s like saying goodbye to my loved ones and I don’t know that I am ready for that. I know that sounds negative, because anything can happen, and I do believe that, but I am also very much a realist who prepares for the worst, and the very thought of maybe never seeing them again after that weekend tears my fucking heart out. Just like every day that I wonder if I have told Andy every thing I want him to know – and hope that he knows that he changed my life and I love him more than I have loved anyone in my life. That, my friends, is my nightly terror – leaving my son alone in this world. I don’t care about anything else. I just want to make sure that my baby is going to be okay and that he knows how sorry I am that all this has landed in his lap during the time of his life when he should be discovering what he loves and who he is and he’s stuck taking care of me. And the tears flow again.
I was trying so hard to keep this light and fucking positive and I can see that that has been a huge fail. So much is undone. And you’ll think to yourself, well get out there and do it! And the reality is that there are somethings you don’t just “go out and do.” When faced with what you are going to do, you have to let go of the dreams you had that can’t possibly fulfill because it’s just not possible. And you grieve for all of them. So much grieving. And even as I type this I’m trying to self-talk myself calm – I want to bolt and stop writing because it hurts so much. But this kind of pain is progress. Unlike the physical pain – which is nothing more than annoying. And at this point, more of an annoyance than a hindrance. There’s that at least.
Well, I am spent for tonight. I’ve tried to enhance this post with some cemetery pictures from today. It didn’t work. Maybe I didn’t save them in the right format. Who knows. The featured image was supposed to be this crazy tree that is way at the back of a pretty hidden entrance to a cemetery I frequent. It always has artificial flowers attached to it. And it’s updated regularly for the season. I like to sneak into the cemetery that way so I can check out the tree. People don’t appreciate the subtle beauty hiding in the places most people ignore. I’m always going to find my happy in an interesting cemetery. It’s like water is to my soul. Maybe Saturday when we go to Philly, I can convince Andy that we need a stop at Laurel Hill…it’s such a beautiful place in the fall. Just so I can take a drive through and enjoy the trees and death and decay. I am going to head to sleep, so I wish you sweet dreams, cupcakes. Thank you and come again.
21 October 15 | Categories: c-monster, Philosophizings, Profound Insights, Random Rambling | Tags: afterlife, anxiety, benefit, cancer, cemetery, chemotherapy, cyst, death, depression, driving, endometrial cancer, fear, flying monkeys, friends, gratitude, pufferfish, sick, sleep, sorrow, tumor | Leave a comment
Ha! Tomorrow I go to interventional radiology to get my tube removed. So, ok, maybe they are referring to it as a tube change, but I am going to present a very well formulated argument about why it needs to come out. There are totally legit reasons, aside from the nagging pain and tugging hose. For example, my immune system is constantly on high alert preventing infection and trying to heal the holes in my back that don’t exist there normally. All that energy spent on fighting fungi and plagues and rare disease spores doesn’t give me much energy for anything else – I’m good for about a day a week. My immune system would benefit from a break and since my bladder provides me with nothing but happiness and joy these days, it’s clear emptying the guts from the pufferfish, was beneficial in relieving the hell of my pelvic region. So, using logic and reason, I have also deduced that my ureter is probably not being crushed any longer at this point in time, in which case, we can remove the hose from my back.
I apologize for my lack of writing – most of the last two weeks I have been horizontal, except for an afternoon in Hershey, and D4 last Friday. I just opened the computer for the first time since Friday. I’ve been subsisting on chocolate milk, crunchy Cheetos and mac and cheese – and a very delicious and fiery taco that Andy brought home from the taco truck he found. I have developed an unnatural addiction to chocolate milk in the last two weeks which must mean my body was lacking something. I had a few days where I plunged into darkness and cried endlessly and sporadically and could only sooth myself by taking long drives in the car and screaming in peaceful forests and valleys. I expect that will occur again after my Dr. visit on Thursday with palliative care. So I’m downloading some more music to my phone. And let’s not forget it’s FALL, which means things are dying everywhere and winter is coming and as we all know, this has never been a cheerful time for me emotionally, because not only is everything dying around me, the people who have meant the most to me who have gone to another place or body, left me in October or November. And then there’s all that turkey death. Dead, albeit delicious, turkeys everywhere. I hope I am up to cooking Thanksgiving dinner this year for the boy and I. Maybe we can have a thanksgiving picnic/food fight like we did when he was two. Good times.
Okay, I’m adequately drowsy now so I can get some sleep before it’s time to get on the road. I can’t have anything to eat or drink after 6 am, so I have to get up before then for my chocolate milk and toast. Or I’ll end up trying to bite a nurse when I get hungry and that never goes well. I’ll try and be more consistent about this blog. I mean I need to write more just for the sake of clearing out my head – I just have to be able to sit up to do it, and that’s been sketchy lately. Chemo never made me as weak and sick as I have been these last two weeks. I am just glad I kept the circle I infected very small because no one deserves to suffer like that. So my friends, and visitors, and passers thru, please send positive thoughts and vibes and animal/insect/fish/vegan sacrifices my way, so that the frankentube is history as of tomorrow. I promise more stories in the days to come. For real.
14 October 15 | Categories: c-monster, Philosophizings, Profound Insights | Tags: afterlife, cancer, death, depression, dying, endometrial cancer, fall, kidney, medication, nephrostemy, pufferfish, radiology, sadness, sick, sleep, tube | Leave a comment
I was trying to coax myself back into a blissful oblivion, which is evading me tonight. The last few days have been pretty much nothing but tears when I don’t specifically do something to keep myself busy. Of course, as I was sitting here, reflecting in the warm glow of a decorated bic as I try not to burn my finger, I noticed the flashing red and blue lights just down the street on the corner. Of course, that window has an air conditioner in it, and made it impossible to be a gawker. Since I wasn’t gonna be able to sleep with the lights flashing anyway and I wouldn’t know what was going on unless I went down the stairs to the porch, I figured I would write and cry and vent because at this point I don’t know where to go with this shit. I don’t even know what it is…all I know is that it’s a fucking huge ache I can’t stop.
I wish I had an easy answer, but none of this is easy. One thing goes better, another falters. A million questions suddenly need answers, there’s a million wise things I want to tell Andy and a million things I want to leave behind for him and any future progeny. I hate seeing him so sad. It kills me that this is killing him. I am afraid of who will be there for him when I am gone. Or who won’t be. And that’s the pain nothing touches. I can’t smoke or swallow that away. And it’s more physical that anything else I am feeling.
I would trade anything to just have normal back – the daily bullshit, the humdrum, the worrying about just bills and heat and easy shit like that. If I could just undo what’s been done. I just want to wake up and have it be okay. To be okay.
Being sick last week made me realize that it’s going to get really bad in the coming months, and I don’t know that I have that kind of strength. And before you tell me how fucking strong I am and all that other supportive shit that I appreciate but right now don’t care about, I know me better than anyone, and I know right now, I am not sure of anything any longer. Other than I now want this fucking tube out of my back too. It’s going to make it impossible to drown in the Pacific Ocean if I can’t get the tube underwater.
That was a joke. Kinda.
Look, here are the facts. You may want to stop reading this blog and forget you ever found it. Because it’s going to get more raw and more painful because this is where I go when my head is so full of crazy thoughts that only moving my fingers across the keyboard can help line them up and get it together. Again, it’s not about needing people to console me or make me feel better. It’s about me making me feel better in the way I know best. I am not going to lie and tell you that I am going to be a spirited fighter until the end. I am not going to be the smiling turban headed warrior all those fund raising ads show. I don’t know what I am going to be. I might be a sniveling fucking crybaby who feels sorry for herself. I just know that all I keep telling myself is one more day. Just one more day. You can get to tomorrow. Some people would be thrilled to have one more day. Suck it up whiny bitch.
And I always feel so ungrateful. People do nice things for me and I am thankful and I appreciate it, but sometimes it’s like I don’t feel like I show it enough. And then the guilt comes in. I wish cancer was just about physical pain. That I can manage. The psychological part not so much. Even with my vocabulary I don’t have words that describe it – it’s like a million sharp daggers that tug on the strings of some weird emotional harp that’s crazy out of tune. I don’t know what I want. I don’t know who I am. I am broken and trapped and very much afraid. And I can’t even tell you what I am afraid of. If you knew the truth of this, you would know why that is so scary.
I’ve cried as much as I can right now. I’ll wake up in a few hours with slimey sticky eyelids and a clogged nose. I’ll lie there listening to the birds and see it getting lighter and everything will seem normal and then I feel the stitches tug in my back and it all comes back.
One more day. Lots of people are suffering more than you are, you whiny bitch. You should just stfu. And I’ll tell myself one more day.
Johns Hopkins called today. No trial for me. The cancer’s rare and pretty and all, but not what we’re looking for. At least it was a shot.
Next Wednesday my back tentacle is scheduled to be replaced; I am going to advocate removal. Maybe I will feel better once my body is no longer is a constant state of stress. Next Thursday I see palliative care. The assuring you the best quality of life people. I see a huge breakdown coming when I go there.
I didn’t want this; I don’t want this. I am going to try to close my eyes for a few hours before the sun is up. One more day.
It’s Monday. I’ve lost a full week. I’m sitting up and made my own bagel for breakfast after enjoying several trips to the bathroom to pee, which since Dana is gone, is a celebration each and every time. I’m working on scheduling doctor appointments and getting up the energy to leap (that’s a fucking exaggeration – I am not leaping anywhere anytime soon,) I am happy just to move forward without falling or gagging or wretching. I puked more in the last week that I did throughout both times I did chemo. Which is a special time when you have a catheter and a nephrostemy, because you may not know, all that shits connected in bizarre ways, and that nephrostemy tube in my back moves in and out as my kidney moves, so when your stomach is twisted up and hurling all that ice water back you just drank back into the sink, it’s also trying to simultaneously push out the catheter and the nephrostemy tube, which being sewn into your kidney and back is being torn out unless you put your hand on it to hold it still. This feat, called contortionism, requires that you twist your right arm completely around in your socket to put your palm on the bandage. This leaves your left arm available for all of the following: keeping you from slamming your face into the sink or holding your stomach, or covering your mouth if you are on your way to puke again all while making sure you don’t step on Dana or get it caught on something. Fucking phenomenal. Then you can try to brush your teeth and hope it doesn’t spawn a new round of hurling. This is followed by return to bed, where you freeze, sweat, freeze and then not be able to figure out of if you’re freezing or on fire. Only ginger beer brings a smidgen of relief. I didn’t even want to sit up long enough to medicate with my fine herbal medication.
So here it is Monday. I’ll eventually write more. For now, I’m sorry if I missed your birthday, or ignored your text, or message or didn’t respond with appropriate enthusiasm to something you said or did, I’m sorry. I went to see my brother and his wife and spend the whole time puking in their bathroom and spreading disease. Today is the first time I even opened the laptop in five days. I’ve spent more of the last week crying and wishing I could just die than I have the last 10 years. And now I’m about to make an appointment with palliative care, the call I never even thought I’d be making.
That said, OWTH was fucking amazing, as they always are, as was spending time with the Erica, and Denise and every one else. Ryan, I hope I can get a bunny shirt on Friday at the D4 show. I’m going to stop now, because I realized I am purposefully avoiding making this phone call. And at some point, I’m gonna need to shower and get in the car and get some sun on my face. Be well. Love each other, and get all the hugs you can. Even if it spreads plague.
5 October 15 | Categories: c-monster, Philosophizings, Profound Insights | Tags: cancer, carnivorous kangaroo, cyst, doctors, endometrial cancer, flying monkeys, palliative, pufferfish, side effects, survival | Leave a comment
It’s hard to believe that it’s barely over a week since I saw the oncologist. Last Monday, I was pretty happy, normal person, albeit with a massive pufferfish exploding to new sizes in my pelvic cavity. And now my world is fucking upside down and I am angry, hurting, scared and lost. So I caution you now, this mostly fueled by the anger I have for this fucking disease and is going to be graphic, and will likely include overuse of the word “fuck,” but at this point, I don’t even fucking care. You might. I don’t. You’re not the one with the giant pee penis rammed into their vagina like a rolling pin, walking around with pee bags attached front and back because your body fucking betrayed you more than you thought it could. I am.
So yeah, there’s humor in here, but only because being fucking bitter makes me funnier. Let’s tell the story. We all know that the whore of a pufferfish is still growing in my pouch of Douglas. We all know I wanted just two more months of no treatment so I could have some fun before I got really sick again. I was dealing with the fact that the stupid c-monster wiggled around in there, sometimes blocking my bladder, sometimes causing me real pain, but things were working for the most part. I was dealing with the almost hourly trips the bathroom at night, the lack of sleep, the constant urge to pee at night. I could live with it, as annoying as it was. Until the ability to pass the pee stopped on Wednesday night. And I am going to get even more graphic here because what the fuck, I have to live it, so maybe this will help someone else who deals with something like it. On Wednesday night, the 12:30 trip to pee ended in a couple drops and about 40 minutes of cramping, cursing, writhing, crying, more cursing, wriggling, standing up and sitting down, and frustration. Sleep five minutes. Back to the bathroom, repeat. All fucking night. For those of you who have given birth to spawn vaginally, imagine that moment when you want to push and they tell you to wait, and there’s all that fucking pressure and you’re just like when can I push this monster out of my uterus??? Well that was what this feels like. I’d been dealing with a milder version of it for months, but at least then it ended in finally being able to pee. Not this time. The sun came up and I got ready for work. Usually I had no problems during the day, because the movement of being up and around would move the cyst away from whatever it was blocking, and I could be normal during the day. Not this time. All morning, nothing. And it is as uncomfortable as anything you could imagine. I google my symptoms and web md tells me I should probably go to the ER. We agree. And off I go.
Since I won’t see a Dr. anywhere but in Hershey, I make the hourish drive there. I’m doing great until I hit Hersheypark. Then my bladder, deciding it had had enough fun with me for the day, bursts like a fucking tsunami in the car without warning. And what do you do when you are pissing yourself at 60mph, and there’s nowhere to stop, and what would you do anyway, if you could, stand on the side of the road and drip? AND it’s raining. AND the get gas light just came on. I did what any normal person would do, I drove to the ER and parked the car and panicked. No blankets, no towels, not extra clothes, soaked in piss. In the rain. 200 feet from the ER. I can’t go get dry clothes at home because I would need to get gas and I can’t get gas because I’d have to get out of the car. I can’t just run over to K-Mart and get some dry things because I am soaked in pee. Finally, I try calling some friends to see if they can run to my house, get me some dry clothes and bring them to me. My friend Lori agrees to help me out and while I am waiting, I decide that I cannot sit in the car in this state for over an hour. I call the ER, and ask them if they could send someone out to get me with a wheelchair or something. They do. And I cover the driver seat with shop towels to try and soak up the mess.
The ER was awesome. They got me right to a room right away, and got me out of my pee-pee pants. I have to say that the ER staff was downright amazing. Now, my body has agreed to let me pee a bit from time to time. At first we’re just going to make sure there’s no infections or what not. I point out that I know it’s the bloody pufferfish’s fault. They do an ultrasound on my bladder and kidneys. My bladder is full. Even though I just successfully completed the attempt to urinate not two minutes before. This is not good. My kidneys look nice, but the right one is showing signs of distress, because the beast in my belly is putting a kink in the right ureter and urine cannot pass from the kidney to my bladder as efficiently. While all the poking and probing is happening, Lori, my saviour, arrived with dry clothes, and my bff Kelly came to visit and brought me a phone charger. You see there’s wireless in the ER, but no cell service. So I need to put my shit on blast on Facebook (which I’d probably do anyway) to try to get messages to the people I would usually text. And for that, I need my phone to be charged. It was like having two guardian angels in the room. All the while they were there, we’re kind of just waiting. I am getting scolded by the wonderful nurses for escaping the monitors they have on me and leaving my room. We set the bed alarm off trying to figure out how to make the back go up. We ring the nurse just to ask her if our pizza is here yet. We make their jobs fun.
Finally, the resident surgeon from urology comes in. We talk about how I was going to have a consult on Tuesday about a stent in the right ureter. I am still not sure how that is going to help the bladder issue, but I am not the medical professional here. He’s hot, not super hot, but definitely a cutie, and probably barely older than my son. Oh good, and now he has to examine me. Now, I know a lot of people say that they don’t care about how they look when they’re sick and the doctor is examining them, but I am not one of them. I am completely self conscious about being obese, with radiation scarring, the myriad of scars from laparoscopies, and my sad sad vagina. I don’t really want to look at my vagina myself, so I feel bad when others have to. And that’s sad, because the vagina and I had a lot of good times together, but that was over 20 years ago, and now, it’s just another body part to betray me. Cute Dr. Brian gives me some options – get a catheter and come back Tuesday for the stent, consider just getting a nephrostemy on the right kidney today, or next week, do nothing, or just get a catheter. I say we should just try the stent, and then see what happens. He goes off to consult the attending, I mentally try to remember his full name for my friend, Ashley, who needs a rich doctor husband.
In the meantime, Kelly and Lori have to leave…it’s becoming late and it doesn’t look like I am going anywhere. Nurse Kristen tells me they are just waiting on urology. Dr. Brian comes back and says, “Hey, I forgot one option, we could admit you and do the stent in the morning!” I like that option. I’m getting a catheter anyway because they will need it for surgery, and Dr. Brian initials my right belly with his purple sharpie so they don’t screw up and put the stent on the wrong side and he’s gone until the morning. Nurse Kristen brings in some helpers to do my catheter, a nice young lady, and another cute male nurse. Oh fuck yeah, bring on the vagina/body image shame round two. Kristen tried to put in the catheter, but it won’t go in, the male nurse is just hanging back and Kristen and the other female nurse go back and forth, trying to jam this thing inside and it’s not going. Finally, they ask the male nurse to do it. He manages to get it in the urethra on the first try, and I breathe a huge sigh of relief that that inhumane torture is over. Or is it? Then they start an IV. The first bag is fine, until the vein blows up and now we are on to the other arm. All this time my blood pressure is through the roof because I am in pain, terrified, and don’t want a hole in my kidney. I break down once with nurse Kristen, and once again when Dr. Brian comes back to check in about tomorrow’s surgery. Kristen puts the IV bag on a hook in the ceiling so I can no longer get out of the room. I am trapped until I am admitted. Five minutes later they come to take me to a room; then immediately cancel it, because they now can’t take me to that room. I remain in the ER.
I have to say that Kristen was awesome when I was crying and sobbing about how this is so unfair, that I have plans for the next two months and how this was not supposed to happen and then cracked up when I said that I didn’t even get any of the good side effects of cancer like losing weight. Not me, my appetite is just fine. Then she said that patients like me are the reason she is a nurse, and that she was grateful to me because sometimes she forgets why she does what she does, to be there to comfort people when they are scared. She said she wished all her patients were like me, and she just held my hand. I don’t often say things like this, because I’m not gonna lie, I have some unresolved shit with my dead mother, but in that moment, it felt like my mom was there trying to make me believe it was going to be OK, because my mom was a nurse too. I was so grateful to Kristen that night, and even more so when she tried to find me jello and could only come up with two vanilla ice cream cups which became that night’s dinner. (I also had a turkey sandwich, later).
Pause here for a breaking funny story:
Andy comes in after his shower, and I tell him that Urology won’t even see me until September 14th, which means I can’t go to Riot Fest or the Whoopie Pie Festival, because there’s no way I can be up and about with the giant pee hose stuck in me for a drive to Chicago, as I am only comfortable standing or lying down, he does what Andy does best – he offers this solution:
“We could get a u haul and attach it to the car and throw you in it on your back, and punch some holes in the side so you could breathe back there or maybe get you an oxygen tank.”
How can a mother not be incredibly proud of such resourcefulness?
Back to the ER now. So the evening wears on – I am being admitted but who knows when? I am now forbidden to eat or drink after midnight as I will be having general anesthesia for the stent procedure. I suck down all the water I can before I become gremlin-like. They pull my IV off the ceiling and put it on an electric pump. I get a new IV in the opposite are because the other one is swollen like a bad molar. Around 2am, I am being moved to a new room. It’s all the way at the end of the hall of a new section of the ER that I have never been in before. It’s dark, and it looks like the holding cell for psych patients at our local ER. Not the psych hold thing again I hope. But in comes Nurse Dan. Again, a handsome young man who will probably take a look at my hideous nether regions. More anxiety. The way they have my IV inserted in my arm, every time I move I set off the alarm on the pump and Dan has to come running. He kindly asks me if there’s any possibility of being pregnant. I snort, and say nope, no uterus. He asks me my favorite question “when was your last period?” I proudly state 2011. When I answer my fifteenth interrogation of the night, I try to sleep. Only to be woken by some maniacal woman down the hall screaming at 5:45 am that it’s her health choices and she’ll make them and then screaming for Dan to get in there. Poor Dan.
Finally cute Dr. Brian and his attending and some other medical minions come to see me before surgery; I tell them that I thought it over, and if they cannot place the stent then do what they have to make my kidney well, and if that means nephrostemy, then that’s what it is. They are glad to hear this. And I am whisked off to surgery. When I wake up in recovery I demand jello, and discover they could not place the stent. Nephrostemy it is. That will come later. That one is an awesome “twilight” procedure, which means my ass will be awake. Oh fucking yay. Fortunately, that does mean I can eat jello. And drink water. No food, but at least there’s jello.
In between procedure one and two, I am taken to the second stage recovery from same day surgery. While I am there, the kindly nurse gives me some IV dilaudid/fentynal to help my pain. It brings me joy. Then two minions from gynecological oncology come by to see me, and tell me Dr. K is out of town, but they will see his associate this afternoon, and she will probably come over this afternoon. When they tell me who that associate is, from my drug fueled fog, I become lucid enough to tell them “don’t bring that bitch here, I have enough stress going on without her lack of bedside manner to make it worse.” The two minions stared at the sudden transformation from my happy cloudy self, to the alert demon before them now. I tell them she tried the put a psych hold on me the last time I saw her and I don’t want her near me in my present state. I will wait til Dr. K returns. I thank them for their time and they leave, and that is the last I hear from gynecological oncology during my stay.
Around 3pm, I head to radiology for the nephrostemy. They give me some meds to relax me, and some local anesthesia in my back. Neither eliminates the stress of what’s about to happen, the pain or the anxiety. I am lying face down on the table while they drill in my back to get to my kidney. After a few false starts, they hit the bonanza, simultaneously finding the only spot in my back that is not anesthetized Screaming commences as they try to get the pain under control; the pain subsides, but I am shaking so hard from the pain I can’t keep still. Somehow they manage to get the tube in and I am eventually returned to recovery. More pain meds follow.
Andy and Tom and my friend Ashley who left me to work for the Governor’s Office all come to visit me. I finally have a phone and a phone number and Erica and Paige call me to talk to me and it between my visitors and callers I feel pretty good and have not had any time to focus on the fact that in less than 24 hours, I have gone from happy-go-lucky cancer girl, to girl-with-a-tube-in-her-kidney-with-a-fucking-giant-cyst-that-is-causing-complications-forever. After everyone leaves, I nibble the snacks Andy and Tom brought and enjoy the flowers that Ashley graciously shared with me. I watch TV. I find that new pee bag became unplugged from its hose and soaked me and the bed. We wash, change and I get back into bed. More pain meds. Dr. R from urology comes by to say he’d like to remove the catheter as he doesn’t want me to have to go home with it. He says they will take it out at 1 am, and if all goes well, I’ll go home in the morning. I get some dinner, a delicious meatloaf and mashed potatoes and fresh green beans. No jello, but a delightful lemon sherbet. When 1 am rolls around, they finally remove the catheter from me. Liberation. I can finally get out of bed, and discover that my bag leaked again. I am not thrilled. Then I discover when the nurse’s aide pinned the bag to my gown the last time she changed it, she put the pin directly through the bag, and not where the pin can safely go. Now we need a new bag. We get things in order, I get to use the bathroom and actually tinkle on my own in one of those awesome “hats” and I try to get comfortable enough to sleep. I now have the IV in the back of my hand (location 3) it’s hard to find a position in which I am not kinking something up or cutting something off or being speared in the kidney by a hose. It’s a fucking circus.
Nancy, the nurse’s assistant or patient care aide I think is what she’s called, is a talker. I had her care for me back in December when I had the laparoscopy. One son is a genius, and is an aerospace engineer with no common sense, who now wants to be a lawyer, and her other son, well he’s just normal. Her husband had his arm torn off and reattached and when he’s grumpy, he makes her grumpy. She has a migraine but what can you do, you have to come for work. She cannot get over the beauty of the sunflowers from Ashley’s yard. She’s never seen anything like them. She’s loud and funny and talks non-stop, which isn’t helping with the sleep. I tell her I would like her to take the flowers when she leaves, and enjoy them, and she is overjoyed and begins to tell me how she is going to dry them and get the seeds so she can plant them in her garden next year. I finally fall asleep for an hour or so, and then the early rounds start – the urology minions first, then the radiology team. I am free to go, once I can get Andy to answer his phone. Andy also has to be here to learn how to clean my tube daily and to change the dressing – they offered to show me how to do it, but um, yeah, it’s on my BACK, and I am not an octopus with multiple arms nor am I an owl who can turn my head to see my back. I eat my breakfast and wait. I put the clothes on that Andy sent down with Lori. His picks were from the “these clothes are being thrown away” pile, so I put on the shorts with no elastic and decide to wear the shirt I came in with instead of the too small one Andy packed. Finally, sleepy head gets there and we learn wound care and off we go.
I get home, feel pretty good for having an hole in my back. I sleep most of the day away, until 11pm, when the no peeing thing starts all over again. Long story short, it was a horrible horrible night. I tell Andy I need to go to the ER, and I pack extra clothes and a seat cover in case of accidents and off we go. About ½ way there, my bladder lets go with no warning. Good call on the seat cover. I tell Andy to take the back way to Hershey because there’s a portapotty at one of the trail entrances on the state game lands. We get there and to my surprise, it’s been upgraded to a real national park bathroom. As gross as a portapotty but larger. I change and we resume our journey. Unfortunately I also have another bladder eruption as we are turning into the driveway for the ER. How can there be so much pee! Andy has to go get a wheelchair and bring me in that way again.
You would think the fun was almost over here wouldn’t you??? I would. I have to give an urine sample. I try to do it in the bathroom, and squeeze out a little. I go back to the exam room, and guess what? Bladder eruption, but this time I am on one of those pads, so it’s all good. While waiting for urology and the er docs to come by I discover that I can pee, but only if I am sitting on a fucking diaper on a flat chair, because it pushes the cyst back up into my body and lets the urethra do its thing. When I try to use the toilet, it rolls down like fucking boulder and shuts everything off. I share my discovery with the Dr. who says it sounds reasonable but not a long term solution so guess who’s getting another catheter. It is at this time I learn that the reason I had such discomfort with the last one was because they used a latex catheter and uh, yeah, I am fucking allergic to latex. Nurse Sara tries her best to gently insert this one, being herself a vagina owner, and knowing how brutally uncomfortable this is. She can’t get it in; Urology is called, and they will come do it. Two doctors arrive, and no matter how hard they are trying to be gentle, they don’t own a vagina, so they have no idea how ridiculously painful this whole process is. Finally it’s in, and my bladder starts to empty. Despite the number of times I managed to empty my bladder using the chair method, it’s still pretty full. They are going to do one more urine analysis and then I can go home. Andy has already left for work, and my beloved Paige and baby Kenny have agreed to come get me. They tell me I will have the catheter in for a week or so – then they will take it out and see if I can just intermittently catheterize myself on my own daily instead of having the giant pee snake invading my vagina. They will call me with an appointment. Nurse Sara comes in to show me how to take care of this set of tubes on my own and then shows me that I also get a snazzy “daytime bag” that I can strap to my leg when I want to go out and about. OOOh, a fancy pee bag accessory – IT’S A FUCKING PEE BAG – not a clutch. I laugh because I doubt that I’ll be all that concerned about the size and shape of bag when there’s a fucking gigantic garden house dangling between my legs. Sara leaves me to the business of figuring out how to dress to accommodate the gargantuan hose and bag. When Paige lets me know she’s close, I ask Sara if I can leave, and she gives me the okay…at this point I couldn’t bear another minute after listening to the dude in the next room grunt for two hours while someone else kept their finger on the call button almost the whole time I was there. I’m outtie.
Not so fast, says the Drop Dead Fred look-a-like at check out. You must check out. I tell DDF, no, I don’t, I was dismissed by the ER. Yes, yes, you do says DDF. He demands my checkout papers. I don’t have any DDF, I tell him. DDF asks if I have any papers from the ER, I say yes, and he demands I turn them over. So I slam my pee bag on his desk, and open my backpack and hand him the papers. DDF peruses them and says, um, yeah, you don’t have to check out. I grab my pee bag and leave in a huff.
I keep falling asleep on the way home, because I am exhausted. Paige and I hit Wendy’s because the last thing I ate I can’t remember. When I get home, pop a muscle relaxer, have some herbal meds, empty the pee bags and pass out in sweet sleep. When I wake up in four hours, the pee bags must again be emptied, as they fill quickly when you sleep.
I’ve since named the pee bags. Tweedle Dee and Tweedle Fucking Dumber. I carry the big one around in my backpack, the little one’s pinned to my side. There’s no getting comfortable, only being able to tolerate the positions. It still feels like having to pee all the time. Like there a rock stuck in my vagina on the end of stick. And while I am grateful for being able to sleep for more than 1 hour at a time, I still have to get up and drain them at least twice a night.
This is my new reality, and why I am so angry. Like I told my nurses, I knew something like this would be down the road, I am not a pollyfuckinganna. I just wanted those last two months, the two months when I could feel like a normal human, not a fucking cancerous blob, who will just sit in bed and wait to die. I wanted quality over quantity. This is not quality. This is a nightmarish hellscape that I am not waking up from. Yes, it could be worse, which is easy to say when you aren’t the one with the pee bags. I know it could be worse, and I am grateful that it’s not. But today when the Urology dept called for my follow-up and said my appointment to determine if they would remove the catheter would be September 14th, that was the last straw. No Riot Fest. No Whoopie Pie Festival. No more swimming. No more baths, no more hot tubs. Just fucking days of emptying and cleaning pee bags, self medicating and sleeping because there’s not much else I can do. I can’t even go to the beach because SAND. I am not happy. I am not.
So before you try and turn my frown upside down, please understand I need to be angry, I need to be able to feel sorry for myself. I need to say that cancer sucks, and it’s a horrible insidious disease, and that I have every right to be upset that my life is completely different today that it was last week. I don’t know what I did in a past life to deserve this, but when I look back on everything I’ve gone through in my life, I kinda feel I’ve been cheated a little. This will pass in a few days I know, but for now I don’t want to talk anymore about it, or pretend my world is a happy fairyland where unicorns play candyland with talking bears. I am grateful for all of the concern, and love, and caring, and well wishes, and prayers, I truly, profoundly am, but I am still coming to terms with what is reality.
And with that my friends, I am going to go have a nice shower with TD1 and TFD2. Good times. I’ll be back to my normal self eventually.
26 August 15 | Categories: c-monster, Philosophizings, Profound Insights, Random Rambling | Tags: annoyances, anxiety, cancer, diagnosis, disease, dying, endometrial cancer, fear, flying monkeys, friends, nephrostemy, nurses, pain, procedure, treatment, uterine cancer, uterus | 3 Comments
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…
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.
22 July 15 | Categories: c-monster, Philosophizings, Profound Insights, Random Rambling | Tags: cancer, carnivorous kangaroo, death, depression, dying, endometrial cancer, flying monkeys, pufferfish, sadness, tumor | Leave a comment
It started out like a good idea. I wanted to post a positive, inspirational quote in the FB group of quotes I started. So I googled. I’ve been struggling with the idea that this cancer came back to teach me a lesson – and what that lesson could be, so I thought, hey, why not a quote about dealing with the lessons taught by difficulties. Had I known that I would have to sift through a bazillion quotes about how I should turn to god in all this, I would have just written my own. As I’ve said before, I am all about people believing in whatever gives them comfort in their heart. Yet, I still get frustrated as hell by the idea that for me to get well, I have to have faith in a god. I don’t. That doesn’t mean I don’t want people to pray for me if that’s what they believe in, because positive energy is good energy in whatever form it takes, but please don’t tell me to put my trust in something I don’t believe in.
That said, the other day when I was thinking about dying, which I do a lot these days, since it’s not something that I can just put aside, I thought for a minute that I would get to see my beloved friend Joey again when I am dead. Then I though, oh shit, I will also have to see my mom. That’s not gonna go well. Ick, and a bunch of ex-boyfriends. Then I remember that we are all energy and no one is really gone anyway, their just a different type of energy, so the “dead” are always with us, just not as we remember them. Then the snowball started – all death related questions, so I thought I’d share a few for you to waste a few hours pondering:
Catholics are taught you are going to purgatory when you die, then you have to atone for all of your sins until you get to go to heaven or hell on judgment day. Also, the unbaptized and sinless get to go to limbo to hang out until judgment day too. So, if that is true, why do we pretend that when someone dies, we have an angel watching over us? Isn’t that like a lie? And where in the bible does it say that you get turned into an angel anyway? I thought the bible was pretty clear that angels are angels and humans are humans and never shall the two interbreed, or HELL. Not that I am worried about this for my own self, but I just wonder about it.
Another catholic concern: If on judgment day you get restored to your perfect human body, if you are going to heaven, which human body is it? Because I would like the one I had at 19. I was really happy with that one. I don’t want this year’s version. And, if you get the body you want at a certain age, and you are trying to reconnect with someone in the afterlife who never knew you at that age, how will they know you, and what if they choose an age when you didn’t know them, then how will you ever find each other and what if one of you is 19 and the other person’s perfect body was at 72, would you still be friends? Think about that. And if you get to pick the age of the body in the afterlife, why even bury dead bodies, because pretty likely you don’t want the one you died in. Unless you were 19. And if you are going to hell, wouldn’t you just get to keep the crappiest form of your body there was?
And why don’t we put wooden crosses at hospitals everywhere the same way we put wooden crosses at crash sites? I mean people die there every day. And at home. I just don’t get it.
Now that I’ve got you thinking, I’ll move on.
I’m doing okay. It’s almost 3 weeks of the tamoxifen. It’s not bad, except for the pimples, nausea, and hot flashes. And now, weight gain, or at least bloating. As if I didn’t have enough weight already. I am trying to figure out if I am dealing with the diagnosis okay or if I am depressed. I’m having pain again, which I manage the best I can depending if I am at home or at work. I am trying to stay off the opiates as long as I can. I feel like I am in limbo now until August, and wish I had a personal CT scanner so I could follow the progress of the ol’ pufferfish myself. I know it’s gotten bigger, because I can feel the changes in my body, and how it impacts my stomach and intestines. I just want the other stuff to disappear, and I wonder if it keeps growing, will they be able to drain fluid from it like before, or am I just going to have to suffer from it? I don’t like suffering. I don’t do well, even though I have a particularly high tolerance for pain. So I just need to know what’s next.
I am not sad. I’m just lacking motivation. There’s a lot of things that go through your head when you have a very uncertain future. A few weeks ago, I was reading an article about being less materialistic. It said before you buy something that you want, ask yourself will anyone want that when you are dead. Amazingly, it really limits the amount of useless shit you buy. Like before I buy another ball of yarn, I say what is Andy going to have to do with the unused crates of yarn you already have, for all the projects you were going to make and haven’t? Then I don’t buy it. It’s morbid and useful all at the same time. So if there’s something of mine you want, better call dibs now, because who knows what will become of it later.
It’s not that I don’t think there’s hope. Because I do. I just have lived my life with preparing for the worst and being pleasantly surprised when the worst doesn’t happen. And if it does, then I was prepared for it I just don’t want to be a fucking Pollyanna thinking that nothing bad will happen, because ignorance is not bliss. I still envision this annoying beast inside of me shrinking and disappearing, I drink the tumor tea, and chant healing sounds. I just don’t want to think that I can go on living like I have all the time in the world. I don’t and none of us do.
I went back and forth on the idea of a bucket list. I don’t like that cliché, but I made a list anyway – it’s pretty short, because I realized I did a lot of the things I wanted to, and the rest, well, either they don’t really matter in the grand scheme of things, or I put them on the list. Mostly, I just want to spend time with people laughing, (which is why I spent the entire weekend alone in the house, medicating) and just hanging out. There are really only three significant things, in addition to my 1000 books read plan, flying in a fighter jet, and do a couple barrel rolls, and maybe a loop, go to Ireland (with a side trip to Stonehenge) and get a van and drive cross country, hitting up all my friends in different states as I make my way back to the west coast. Oh and get a passport. I still haven’t actually gotten around to that. I do have other plans as well, but they aren’t “bucket list” per se, just stuff I am not going to put off doing any longer.
Anyway, this was kind of random. Maybe because I had a lot of pain this morning and I treated it. I also thought it was Father’s Day today, and called my dad to wish him greetings, only to have him inform me it was next week. Andy and I are going to see Against Me! next Saturday in Lancaster, and hopefully my shark sister and her husband will join us, and we can finally get Himalayan food before the show. As for now, I suppose I need to go through my washed clothes in the dryer so I have work clothes for this next full week of work ahead of me. For the record, last week I worked on two case dictations – 41 pages of typing and over 50,000 words total. And only 7ish cases left to go. So be well my friends, enjoy your Sunday, and hope that the next time I blog, I make sense. Be well.
Oh, and you should read this article on impermanence. Here ya go…
14 June 15 | Categories: c-monster, Philosophizings, Profound Insights, Random Rambling | Tags: afterlife, anxiety, bear, cancer, carnivorous kangaroo, chemo, chemotherapy, ct scan, cyst, death, depression, diagnosis, disease, doctors, endometrial cancer, fear, flying monkeys, malignancy, pain, peace, positive, sadness, sick | Leave a comment
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.
31 May 15 | Categories: c-monster, Philosophizings, Profound Insights, Random Rambling | Tags: amusement, bears, cancer, challenge, chemo, chemotherapy, ct scan, death, disease, doctors, dying, endometrial cancer, flying monkeys, life, malignancy, pufferfish, sick, side effects, tamoxifen, treatment, tumor, uterine cancer | Leave a comment
I’ve got my crankypants on today. I am on the verge of a breakdown, which I am eagerly anticipating since once I have it, I can get back to the business of being me. I almost typed normal, which I have never been, or will be. Even commercials are annoying on TV – especially the flonase one, in which I am told repeatedly that six is greater than one. Thank you very fucking much flonase. I know that the American education system is flawed in a lot of ways, but I am pretty sure anyone who ever attended school learned that six is greater than one. In fact, my guess is that unless a person was raised by wolves, EVERYONE knows that six is greater than one. I don’t need big pharma trying to sell their product to me with a condescending commercial. So fuck off Flonase.
And Snapple commercials – also fucking stupid. And any feminine hygiene commercials, except for those great commercials from a few years ago, where the woman mocked dancing and riding horses when a woman has her period. If you want to sell me you shit, appeal to my intellect, or make it direct, but don’t try to trick me. Again, I suppose it’s because I don’t consider myself a sheeple, that I think most of what I see or read is skewed and manipulated and trying to make me a mindless consumer. With this is mind, I have taken a new approach to shopping, from an article I recently read about living a more simple life, and death – when I am going to buy something, I am now going to ask myself, will anyone want this when I am dead? Because if not, I don’t need it, because people will only throw it out when I die.
These are the things keeping me awake besides the decadron tonight. And since I cannot escape the omnipresent thoughts about this fucking vicious monster inside me, you, my friends, will also be subjected to it until it either a: it goes into remission, or better yet, vanishes or b: I have a breakdown and stop stressing over it or c: I die. Yes, I said it – die. Because we all do, and since I see more and more people my age doing it, and because of a conversation I had with my old friend Anne, in which we realized that most of the people we hung around with / dated in high school are, well, dead, it’s been on my mind. And the tragic mess that is my house is also a reminder that should I die tomorrow, from this disease, some other medical issue, or from walking under a falling piano that Wylie Coyote was planning to drop on the Roadrunner, it could happen. There are journals to be shredded and/or burned, wills to be amended, and just other odd bits to be destroyed/discarded. I am not worried about what I put on Facebook or in this blog, because whatever I put on a computer will live forever. I used to think about that when I wrote in my journals, but there are some very dark times in years past, that are better left unread. Nothing that would enrich or improve anyone’s life. Of course, there’s a burn ban in effect in Schuylkill County for the next month, so it’s not like I can burn them right now anyway…but if you read this, and if I should die before the end of May, there’s one journal in my bedroom, and I think two are in the giant steamer chest in the living room with all of my photo albums and a copy of Madonna’s Sex book which I put in there because it would be too much trouble for Andy to move all the stuff on top of it to get in there and find it. Somebody get in there and destroy that shit ASAP once I am cold.
And while we are being candid here, I am gonna put this shit out there too, again because I am cranky and I am gonna be up for a few hours because the sucky decadron make me superhuman and amps up my anxiety x100 the night before what we are hoping is the last chemo for the next 20 or 30 years. When you have the stupid c-monster, or any other chronic disease, people will ask you how you are feeling? I really want to tell people how I feel, but most times you just say, fine, or tired, or great, and slap that stupid smile on your face, to make other people feel more comfortable. After the next two or three weeks, that might be true, but this deep into chemo, the answer I bite back is this: I feel like shit. I could sleep 24 hours a day, every day, except when it’s warm and sunny, and I want to go out somewhere but don’t feel up to driving myself. So I sit on the porch. I feel nauseous most of time (this is new, I have to eat every few hours or address the need to hurl with other treatments) and nothing that I eat or want to eat really tasted good. I have this weird smell in my nose that won’t go away. While my eyebrows have not completely fallen out, most of my eyelashes have and I wake up with my eyes crusted shut every morning and my greatest fear is that I will lose my excellent health care insurance because I will get too sick to go back to work and I will be reduced to substandard health care, or worse yet, medical assistance, and will not be able to afford getting well. I have weird pain, I forget shit all the time because of my chemo brain. And I am afraid every time I go to the doctor that I will get bad news and have to continue with my treatments indefinitely. That’s how I am feeling – how are you? But you don’t get to say that. (sorry I know I’ve said this all before, I apologize for the redundancy. No, not really, this is my fucking blog and since the only people here in the house to talk to at this time at night have their eyes permanently sewn open and their mouths sewn shut, there’s a lack on interactive conversation.) Random thought: Does Chris Isaak even write music anymore? You never hear about him anymore. That’s what I need, I playlist with Chris Isaak, Morrissey and Elliott Smith, with a dash of Jesus and Mary Chain circa Darklands tossed in there and I would never leave my bed again.
Yes, it’s true I am feeling sorry for myself. I am scared to death of what’s to come in the next month. I am scared that I will need to have more chemo. I am scared that the scans will show something I don’t want to know. I am not a fan of this nonsense at all. I’d prefer to lie in bed sleeping all day because I am just a lazy cow instead of it not being my choice to do nothing. I would prefer to go through life not thinking at all about whether or not I am going to have to have treatment again. It’s so not fair. I long for the days when staying my jammies all day was a decision, and not because I am too weak to get dressed. I want to enjoy a shower, not dread the exhaustion that follows. I want to look forward to cooking, not just pray I can find something that tastes good and requires minimal exertion on my part. I want to enjoy drinking water, and not fear it will taste like poison when I drink it. I want to walk up a flight of steps without gasping for air like a fucking trout out of water. I want eyelashes dammit!
It’s now 2am. We are leaving at 7:30 tomorrow because my doctor’s appointment is an hour earlier. Of course it would be on the day that Andy is going to be my chemo pal. Hopefully the Dr. will be on schedule, and we’ll be in and out of there, and Andy can go sleep for a few hours at Tom’ house while I get my treatment, so he’s not up all day and then has to go to work with no sleep. What does that mean? It means if you feel like visiting me while I am pumped full of poison, I will be in the second floor infusion room, hopefully one with windows, and a decent automated bed (not like the bed that required manual adjustments the last time I was there) after 11 am, because before that, we will be getting Asian rice crackers, Starbucks and some more oxycodone, to make chemo more fun. It’s only 3 more hours until decadron dose number 2. Good times.
I was going to try to end this with something positive, but I feel that would be fake, so I am just going to start packing my backpack for tomorrow. I’ve found that since I don’t need to bring a blanket to the infusion center, I can actually get the laptop, my stuffed friends, and snack all in one backpack so I don’t look like a dying homeless person when I go to the hospital. I suppose that’s positive. And I can throw my sheets and blankets into the washer and actually dry them before I go so I can have a clean fresh bed when I get home, so that’s positive. And I already have ginger beer, honey and pineapple juice to get through the next few days. That’s plenty positive.
I think I might actually blog from the hospital tomorrow to document the day’s events. That could be fun. Now I am off to fold another load of laundry and eat a yogurt. Then try again for sleep. So curl up with your favorite toy, my puppies, and sleep tight. And think about all the people who have bed bugs, and be eternally grateful you don’t. Bon soir.
Addendum: There should be an assessment period before people are allowed to be on Facebook. Like they should have to have a myspace and it should be monitored for stupid and annoying things that are misspelled, bigoted, or obviously scams or urban myths. If a person posts that shit, they should never be allowed to move up to facebook. I am tired of being the internet police, sheesh.
Also, why when you google anything about cancer, everything is pink and has to do with titties? I mean I get that breast cancer is a huge issue for women, being that I am one of them, but what about all the other killer cancers out there, why does it seem we only care about cancer that affects the one part of women that, aside from the vagina, are something of interest to men? That pisses me off.
22 April 15 | Categories: c-monster, Philosophizings, Picture Perfect, Profound Insights, Random Rambling | Tags: annoyances, anxiety, bald, blackness, c-monster, cancer, chemo, cyst, death, depression, doctors, dying, endometrial cancer, facebook, flying monkeys, friends, laugh, sleep, uterine cancer | Leave a comment
I stayed home again today – this means there isn’t going to be a paycheck next Friday. Good thing chemo is Wednesday, since I won’t need food or have much of a life for a week or two after that. Yes, you read that right ladies and gentlemen, chemo is next Wednesday is chemo, which may very well be my last chemo, we can only hope. I’m so done with all of this – waking up to eyes crusted closed because I have no eyelashes to protect them, the dry scratchy skin on my face and legs, the weird wispy white hairs that grow in the interim while I wait for my hair to grow back, being fucking exhausted 24-7, the weird smells in my nose and the fucking metal taste that hardly ever goes away.
But let’s review where we are at before I continue. My CA 125 number is still in the normal range, which is good, but it didn’t go down for two treatments and it went up this week, so I’m a little anxious. My blood tests are good, but my counts are understandably down, especially my hemoglobin and my white blood cells, which means I am ultra-susceptible to infection, in addition to being exhausted. I’ve been watching my temperature all day, because I started running a low-grade fever last night, I have an earache, and I can’t stop sneezing. What did the doctor say during our last visit you ask? Well, he thinks that the chemo will have done its job, and I will start hormone therapy after this last treatment as long as my scans look good. Ideally, the tumors will have disappeared, or at least shrunk significantly. It will still be contained to the area where it started and left the rest of my body alone. We did talk about the surgery option, and that’s never gonna happen. He said I’m not a good candidate, and he said it wouldn’t be a positive experience for me even if I was a candidate, so what does this mean? The tumors stay, no matter what their size. His goal for me and my treatment is give me a good quality of life. He did say I am not dying at this time – I will still make it to the OWTH show in Philly in September, and he will let me know if the prognosis changes and I am dying. He definitely said he would let me know if I was dying. So no dying. As for my plan to have grand-babies if that is what Andy and his life partner decide to do, Dr. K said there were too many variables for him to guarantee that could happen, but I definitely will make it to OWTH in September. That means I will also probably make Halloween and Thanksgiving, and Christmas this year. More than likely, I will be around longer than that too. It doesn’t sound like my demise is imminent at this time. These are all good things.
So tell me then, why am I so unhappy? When does this new lease on life shit come around? It didn’t happen last time, it’s not happening this time, and it’s very disheartening. I know a lot of this has to do with my exhaustion and my inability to do a lot right now, but I also know that if these tumors are not gone, or drastically diminished, I’m a time-bomb. According to my Dr., my cancer is atypical of endometrial cancer. It should not have come back, but it did. It should not be responding to chemo, and it is. It’s not doing anything that endometrial cancer should do. It’s quite possible that the cyst was always cancerous, but it never showed any signs of malignancy until this last surgery, which is bizarre. It’s my own special type of endometrial cancer. How fucking lucky am I?
I didn’t want to write anymore about cancer. It’s just not as funny this time. It’s old and annoying. I am much more than this disease, but right now it’s the only thing that I can think about. At this point, I have so little energy, I am excited that I can make something to eat in the microwave. I made baked hot dogs for dinner the other night and needed a nap afterward. I need a nap after I take a shower. I can get in the car and go places, but it is work to get out of the car and go in the house. If I can’t drive through it or get it all in one store, it doesn’t get bought. Sitting up for extended periods is tiring. I don’t want to sleep all day, and that seems to be all I can do. Thank goodness for the DVR, because I fall asleep during nearly every show I try to watch. I am surprised I didn’t fall asleep eating or driving yet. This disease is a monster. After my last chemo, I had these weird pains all over my body like a whack-a-mole of pain – there’s a spot on my foot that still hurts, and actually feels like I broke two toes, but when I actually touch them, there’s nothing wrong. I’ll fall asleep and then suddenly, bam, a fiery pain rocket fires in my leg, and I’m awake. Then the restless foot thing happens and I’m whining for an hour trying to get back to sleep. My medication helps, but sometimes I would like to just have a clear head for a few hours. I keep telling myself over and over…just one more. There’s just one more treatment – please let there only be one more treatment.
Opiates make for weird dreams throughout all of this. Most of them are weird in a good way – like I want to go to back to sleep to resume them. There are also weird dreams when I am not taking them, probably because my brain is bouncing back from being in the poppy cloud. Last night I had a really sad dream though and it’s been hanging around all day, as if now even my sleep is conspiring against me to keep me from waking up with a smile on my face. Meditation, chanting, sunlight – I am really trying to keep the black cloud away, but it’s not working out as I planned. Don’t get me wrong – I am still really okay with the whole death and dying thing – I still feel like life is trying to cheat me – but whatever is going to happen, is going to happen. I mean, I could step outside and step on a Shenandoah splinter, and get hep c. I could be hit by an unattended, unoccupied, runaway vehicle that rolls away from near the One Stop. I could choke on a grape. I’m OK with that – what I am not okay with this uncertainty, and the fear. I’m not fearless. I might act it most of the time, but in my bed – I am scared little girl, who is afraid of what might come – not the death part, but the being sick part. I don’t want to be any sicker than I have been. Again, my future is now going to be controlled by my access to health care.
There is plenty to be grateful for though. We now have a dryer again, thanks to Crystal, so I can at least watch and dry clothes now, even if I don’t have energy to take them upstairs. Andy cleaned the kitchen, sort of – now if I can get him to take the recycling to the recycling center. The rest of the house is a shambles. It’s spring. Things are turning greener. Kellie hung out with me at my last chemo and let me beat her at scrabble. I went out to visit Paige and Preston and Kenny. I had some pudding. It was good. It’s not all gloom and doom, but I need to vent what I feel here, because in the tower, there’s no one but me to talk to. It’s not easy being positive when you don’t know what’s next – I do what I can. Mostly I am happy and laughing, because what else is there to do, but alone, I am reminded that life has not handed me an easy go of this. It’s not fair and it sucks, and it’s so easy to be on the outside looking in and think that there is an end in sight – there is, but like the rest of life, it’s all fucking gray – not black or white, or anything I can hang my hopes on. Sure, the glass is half full, but in my world, someone will come along and poison it, just to keep me on my toes.
Sounds like the dryer stopped, so I should go throw the blankets in, so I can have fresh clean blankets to wrap around my walrus body once I take my medication and drift into a medicated slumber. I want to get past this disease that has overtaken my life, and focus on politics, feminism, and social injustice. ( I know you can’t even wait for that). Plus my eyes are getting weepy and tired, and want me to rub them non-stop until they are sore and red.
So that’s it for now my friends…I’m just gonna quietly post this, because this one was all for me, just to help me process my frustration. As with everything this will pass. Be well.
17 April 15 | Categories: Uncategorized | Tags: anxiety, blackness, cancer, carnivorous kangaroo, chemo, chemotherapy, ct scan, death, depression, disease, endometrial cancer, flying monkeys, sick | 2 Comments
Okay, it was three days, but that would make a super-long title, and I was trying to be succinct. (As if that ever happens.) I bet you thought I was going to write about Chemo Day, but that’s today, and hasn’t technically happened yet, except for the pre-gaming with Decadron and water and the daily cancer killing tea. I still need to shower and pack my stuff for the day, and am faced with the usual decision of do I take my cute pink back pack and carry the lap-top separately or do I take the black one with wheels? I am leaning towards wheels today because it fits more and well, has wheels, and I’m not feeling my best but I don’t seem to have a cold or ebola, and I don’t have a fever – which is awesome because I was scared I would be sick today and then have to postpone today’s fun fun fun. My chemo-buddy today is Kellie, who I know is thrilled beyond anything to be accompanying me to today’s festivities.
BUT! This entry is about the best three days I have had in a long, long, long, long time. If you have reading my blog, you know Off With Their Heads is one of my very most favorite bands. Listening to their record In Desolation (“Drive” video here) got me through my first six weeks of radiation and all that first round of chemo and their music accompanies to nearly all of my drives to and from Hershey over the last 3.5 years. When I remember my headphones, I listen to Ryan’s Anxious and Angry podcasts at work, or in the car. The music has become part of my support system. Well, Thursday, Andy and I drove to Pittsburgh on what was supposed to be a beautiful day to see OWTH play at Howler’s Coyote Cafe (note: saw no coyotes – I would make a cougar joke here, but I find the term cougar offensive, I prefer tigermom). Their show was amazing, the energy and passion of the band was amazing. They played songs from all of their records, and Ryan was awesome. The energy was awesome. The opening bands – World’s Scariest Police Chases, Barons, and PEARS – were all incredible. I met an internet friend, Erica, her husband Brian and some of her friends at the show – we became friend because we both like OWTH and punk music in general, and surprise, we are both work with kids in the system – I snatch ’em and she assists the ones that the court declares incompetent. After the show, I got to get hugs from Ryan and talk to him for a little while, which is always fan-girlie for me, because I can’t believe someone that I look up to takes time to talk to me. I got to introduce him to Andy too, which was cool. I had to have a drink with him, but alas, Howler’s is a bar that allows smoking, and by the time the shows were over, I was dizzy and shaky and a little nauseous and just wanted to go home. Ryan said they would probably be playing in Philly in September, so I hope to have that drink with him then. It was an amazing night. I also got to meet and talk to Zack from Barons while I was standing outside the bar waiting for Andy to bring the car around. Fucking stupendous night. (and if you read this Ryan – THANK YOU for being who you are – you made my night)
Day two was supposed to be the Warhol Museum, but Andy and I decided that even though it was snowing, we were doing the Pittsburgh Zoo and PPG Aquarium, because when I have to choose between becoming more cultured or seeing animals and making animal noises, I will ALWAYS choose the latter. Bring on the Komodo dragon, red pandas, and giraffes. And very sad elephants. And PUFFERFISH. Several different kinds of pufferfish, evil, evil pufferfish. Did I mention that the Zoo is on a hill? Or should I say a mountain? Because it’s a mountain. A huge mountain. And Andy would not push me in a “safari cruiser” IE. wheelchair. So I had to walk. Wearing heavy Doc’s sandals. Carrying water. It was brutal. We probably walked at negative 1 mph. Lots of heaving breathing and a frequently sweating head that was frosted by the subzero wind chill and flurries. It was fun though, spending time with Andy, telling him about the trips to the zoos and aquariums when we lived in California, making animals sounds, trying to find the animals that were clearly not home, and making flattened pennies like when he was 5. Afterwards we went back to the condo, got some great Italian beef sandwiches from a tiny place called Tooties (yum!), then just hung out and watched non-cable tv and napped. Later we got pizza from this greek pizza place called Ephesus, and again, awesome food. We just hung out and talked and slept the rest of the evening.
Saturday, we got up, cleaned up the condo, packed and headed out to an overlook to see Pittsburgh from the top of one many hills. Pittsburgh is an awesome city. We found an overlook, not the one we were looking at because in addition to sucking at taking night pictures all of the sudden, my phone’s GPS takes us to places that don’t exist. Or rather, when asked to take us to a location, it agrees but then leaves us in spots that are clearly not even remotely near where we asked to be. We did get to see a lot of Pittsburgh though, and Andy is even considering going out to Pittsburgh to finish school (YAY, FUCK YEAH!) Fortunately, the GPS cooperated with taking us to Abby Lee Miller’s Dance Studio, where I stalked cars pulling into the parking lot to see if there was a real Dance Mom getting out for class. None were available, but there were the cutest little people being brought to class. The studio was less impressive from the outside that it appears on the TV, but it was still cool to see it. Then we headed to Philadelphia. Did I mention it was FREEZING? Like super freezing. And snowy. We got to Philly by about 4, and hung out with Blaine and Lizz and had a delicious dinner from a real Mexican restaurant called El Jarocho that made scrumptious lamb tacos. Then we headed to see TBR/The Wilhelm Scream/ Pennywise, which was a fabulous show, but in my opinion, lacked the energy of the bands on Thursday, although it was very cool to realize that Pennywise has been a band for longer than Andy is alive, and I finally got to see them with their original vocalist. I hadn’t seen them since 2008. Long time. Unfortunately, I got a horrible horrible pain in my side and had to go stand in the back to try to work it out – we ended up leaving before the last song or two, but at least the pain subsided for the most part. We caught a cab back to Blaine’s to get the car, and headed home. But not before we stopped at Wawa, and got to see two drunk girls in ridiculously high heels almost wipe out several times in the store as they tried to outlast the state police DUI checkpoint. Good times.
We finally rolled home about 2 am. The house was freezing, but honestly, it was a small price to pay for such an awesome weekend. It felt so amazing to be among my people, enjoying simple things with my son, and talking about life and lessons and futures and hopes and dreams, and meeting awesome new people, singing at the top of my lungs to songs I love, and finding some peace in all of this. I basically slept through the next day – I was exhausted. I made it to work on Monday, and realized that if I died that day, I’d have no regrets – not like I don’t have plans for the future – but I was pretty damn happy, and would be okay if there wasn’t anything else ahead – I’d made peace with what could lie ahead. And made arrangements with Andy to be turned into fireworks whether things end in the next few years, or 50. I’m okay with it all. That’s not to say that I am not concerned, and wouldn’t prefer to live another 50 years, but whatever is ahead, I’m gonna be okay with it.
I’m actually finishing this early Thursday morning – post chemo. I’m going to stop here, and write about my Dr. visit and chemo later today, because I decided to wind down tonight with a cocoa-vodka/oxycodone mix, so I can sleep pretty soundly tonight. I also drank a lot of water today, so I am trying to avoid waking up ever hour to run to the bathroom. And I’m still feeling okay with my life, and what’s unfolding in it. The three day trip really refreshed me, reminded me that despite the horror of the last year and a half, from the time the pain started to today, dealing with this stupid fucking disease, I’m learning about me and what matters to me again, and finding the strength to make plans again, even if I still can’t act on them. Life is still hard, I’m still not always making the best choices, but this weekend reminded me of the person inside, and what brings me joy. I just need to bring more of it into my life.
So with that said, here’s some of my favorite pictures from the weekend – I didn’t take any pictures at Blaine and Lizz’s house – I don’t know why because their puppy Pancake is a sweet dog and fun to play with. It was great to see them again, and just hang out. But I am derailing again – here’s the pictures, including the evil pufferfish, enjoy them and come back later today to learn what the Dr. said my future looks like…sweet dreams my dahlings, I will have a peaceful early morning rest, hopefully, before the sickness starts.
2 April 15 | Categories: c-monster, Philosophizings, Picture Perfect, Profound Insights, Random Rambling | Tags: afterlife, alcohol, amusement, Andy, anxious and angry, cancer, challenge, disease, endometrial cancer, family, fireworks, happiness, happy, no regrets, Off With Their Heads, OWTH, Pittsburgh, resolution, road trip, show, son, uterine cancer, vacation, vodka-cocoa, weekend | Leave a comment
It’s never a good sign when I go to start writing and can’t find my glasses. I mean, I can do this without them, that’s what the little magnifying glass is for, to make this shit bigger so I can see it. But I’ve been having a lot of anxiety lately and now, being unable to remember where I put my glasses is going to be added to that mess of thoughts that are rattling around in my skull.
Anyway, I’ve not been writing – not because I haven’t wanted to, because I have, but there was a 10 day stretch where I couldn’t sit up for extended periods which makes the whole typing thing a bit difficult. Like I said, I have had some serious anxiety, something I have never really had before in my life, not at this level. I know it’s related to the c-monster and the uncertainty that is part of this go round with this nonsense. I also know that writing would also help to purge some of it, and I haven’t been able to. I also realized today that I am also really angry this time, angry that I have to deal with this again, angry that I have to put my life on fucking hold because I live in a country that doesn’t believe in national health care. You see, when you have cancer, it’s not like having diabetes or high blood pressure, stuff that is serious, but manageable and affordable for the most part. If I lose my health insurance, I am fucked. I mean, I know that I can still get treatment, but not the best, and certainly not without the added stress of worrying about how to pay for it. So, even though I have FMLA, because there is no finite end of this in sight, I am constantly in fear that I will lose my job, and with it my health insurance which has thus far assured me that I will have quality care. And in my reading over the last few weeks, I’ve learned that while I cannot be denied insurance for a pre-existing medical condition, I can be denied coverage for treatment related to that condition. For example, I can still get health insurance, but they don’t have to pay for ongoing cancer treatments, as long as they cover everything else. This information adds to the anxiety. I am not going to belabor this, I just need to say that it makes me angry that human life is only valuable when it furthers a fucking political agenda. Adequate health and quality health care shouldn’t be something anyone has to worry about. But I live in America, where what you get is what you can afford. I shouldn’t have to worry about things like this, I should be able to focus on getting well but the reality is that I can’t just worry about my health, I have to worry about being able to keep health insurance so I can get treatment I need.
It all comes down to the fact that this time, the c-beast is still inside me. They can’t just cut it out and give me chemo to track down and kill any escapees. All the visualization in the world will not erase from my mind the fact that my whole life is on hold while I wait to see if heavy metal poisoning will stop these arrogant killer cells from multiplying, and hopefully they die off and leave me alone. And unless it vanishes, that shit will remain inside me, waiting, taunting me. I don’t believe I will live in fear, but it’s always going to be there, in the back of my mind. Every pain, every discharge, every weird wiggle or twitch in my body will have me wondering what is going on inside. I am angry about that. I am angry that I have to endure this again, that I have to spend 10 days in bed because I can’t sit up without wanting to hurl, and there’s nothing to hurl, because I’ve eaten so little that it’s all bile. And all of this leaves me scared; I can put on the happy face, I can make jokes, I can smile and laugh and pretend it’s all ok, but I am fucking scared to death that it won’t be, and then I feel guilty because I then thing my thoughts will create my reality and …WHAT THE FUCK IS WRONG WITH ME??? Maybe I remember that the last time I went through this I was much stronger and positive, but then maybe that was just the way memory works, maybe I felt the very same way.
So yeah, I don’t know if it’s the same for everyone who has cancer, but I lie in bed at night and wonder what I did to deserve this. Was it something I ate? Having the laptop on my lap? Being a fat cow? Negative thoughts? Thinking badly about others? Revenge? Consequences of bad decision making? Drug use? It’s just not fair. I want my life back, I want to just be the happy and carefree grasshopper that I used to be. And then I go downstairs and I see Andy lying on the couch asleep on a Saturday night and I feel like it’s all my fault he’s there because his paycheck goes to making sure we have food and electricity instead of alcohol and clubs like it should be for a 23 year old. The last place I was on a Saturday night when I was 23 was asleep on the couch, unless it was because I didn’t get home until early afternoon. And even then I was probably going to spend some money on some substance that would keep me up for another 24 hours. I accept that my teeth are shit for those poor choices, but that should be enough punishment. The poor kid works overtime almost every day. He shouldn’t be here taking care of his mother, it is my job to take care of him. It’s wrong.
I swore I wasn’t going to whine about cancer incessantly when I started writing this but it’s hard not to when your whole day revolves around whether or not you are sick or going to blood tests or appointments or wondering how bills get paid and how to keep your health insurance. I sometimes wonder if I sleep so much because I am sick, or because I don’t want to have to think. (I know it’s because I am sick, but I can’t help wondering). I’m scared and I’m angry and I am worried. I wish I could break down and cry but my stomach ties up in knots and my chest gets tight and I toss and turn and wish I could just forget for a while what day it is in my treatment cycle and forget when I have to go back. I’m 2/3 done with this series of treatments, and my numbers look good, but at my last doctor’s appointment, Dr. K pointed out that while my numbers look good, they aren’t where he wants them to be at this point, so he subtly hinted that six cycles may not be the end of my treatment. And so, the end I was keeping in sight, is no longer so clearly defined. And sure, I know many of you are thinking but he didn’t say you have to have more treatment, and be positive, and stay focused and blah blah blah. Easy to say when the tumor is not inside of you, and trust me, I remind myself of all of those things a million times a day, while I count the hours until the next CA125 test to see where that fucking number is, knowing that even if it’s improved, it’s not a guarantee. Everything is so much more complicated this time, and as a result, my mind is constantly picking apart every twinge and tickle.
And since I can’t literally kick the shit out of the monster inside me, I let other things frustrate me, and then I hate myself for that, because I am not that person. I want to be Polly-fucking-sunshine and I can’t be, even though I constantly try. And lets not even talk about disaster house, my prison during my sick days. I spent two hours today trying to do some organizing and hardly made a dent. I ask Andy to do stuff, but let’s be realistic, the kid works 12 hr days for 5 days a week, and I am not gonna wake him up to ask him to clean the bathroom or do dishes. My friends offer to come help, but I am too ashamed to let anyone in to see the disaster this house has become, and I can’t do anything myself. I feel pleased making my bed and hanging my clothes on hangers. I vacuumed 9 steps the other day, and was too tired to finish, which then made me angry that I can’t fucking do anything. I would wish the house would burn down, and let me start fresh, but that would affect my neighbors and that just wouldn’t be fair.
So yeah, I’m pretty frustrated. It will pass eventually, I’ll get to a better place but in the meantime, I’m in this dark place trying to stay all sunny and hopeful. What I really planned to do when I started to write was to write about the amazing kids my son went to school with at Milton Hershey School (go ahead, click and visit them, this will be here when you get back) and how they started to raise money for me to get my own car so I don’t have to rely on Andy all the time because right now we have one car, and Andy has to drive me places and pick me up, after he works all night. I can drive myself, but when he’s not here and has the car, I’m stuck because I can’t really walk anywhere for anything. It’s on gofundme – it’s amazing to see what some of these young adults donated – crazy – for me, and their messages – it touched me beyond belief. I only found out by accident, and Andy had no idea either. More than the money is that these amazing kids wanted to do this for me, and help Andy and I. But maybe even more touching was the lady at the pharmacy the other day when we were coming back from Hershey. I went in to pick up my “auto refill” pills, which were only partially refilled, so I had to wait. This older woman came in, she was 75, and her refill was also “auto refilled” which meant she had to wait too. We started talking, as my bald head kinda clued her in to my cancer, and she told me how she had a quadruple bypass and then had clots in her lungs and died three times on the operating table. (For the record, she also told me there was no light, and none of that nonsense all those people who died claimed to see) She was a very religious lady, and kept telling me she was testifying. When they called her for her prescription, we ended up hugging each other. As she was leaving, she shoved five dollars into my hand and insisted I take it, and we wished each other well. I was moved by how much a stranger cared about me, and how you can make a connection in the most unlikely of places, on a day when I felt like walking death, and all I wanted was to get home and get back into bed. Of course, I realized that had they not screwed up both of our prescriptions, our paths would never have crossed. Still, it doesn’t mean I am not changing pharmacies, because I am tired of their mess ups. Anyway, it was serendipitous moment that made my day.
Well I think I pretty much got a lot of my ire out in this post. Wasn’t the funniest or most reflective one I ever wrote, and totally not what I was planning in my head, but it’s good enough for me. I’m gonna try and get some sleep, since I want to try to get a few things done tomorrow. At least get a load of laundry or two washed, so that’s it for now lovelies. Be well and enjoy the start of spring. I’m gonna go spend a few hours chanting and hope it lulls me to sleep. Sleep tight.
22 March 15 | Categories: c-monster, Philosophizings, Profound Insights, Random Rambling | Tags: amusement, anxiety, bald, bears, blackness, cancer, carnivorous kangaroo, chemo, death, depression, diagnosis, disease, doctors, endometrial cancer, flying monkeys, narcotics, pain, peace, radiation, rambling, restless, sadness, sick, sleep, spring | Leave a comment
So here we are – 2:20AM, on the day I am supposed to do cycle three of chemo. I should be sleeping, and indeed I was, once again with the lappie in my lap. It was long day today – there was a weather delay and I did not want to go to work at all, but I went in, and got through the day. Yay me! I took my first 5 of my pre-chemo decadron, after some initial panic that I was all out. As I pulled out my plethora of pill bottles, and tried to read the labels without putting glasses on, I was once again pondering the fact that no two pills that I take are the same color. Decadron is green, morphine is robin’s egg blue, synthroid are purple and pink, and effexor is yellow. I have more, but I imagine you get the idea that I have like the skittles collection of medications. I don’t even think my dad takes as many pills as I do.
The rainbow of flavors, or rather colors, of my meds is not what brought me here tonight – no, my friend, it’s something much more serious. I can’t find my backpack. Or my iPod (yes, again). I believe both are in the house, I just can’t remember where. This is another of the great gifts bestowed upon my by chemo. Fluffy chemo brain. Sometimes I think my brains fell out with my hair. And as you know, the only thing of value that I own, or at least am still paying for, is my brain. I’m not real pleased when it won’t function like it should. I was hoping to use my backpack tomorrow when I pack for chemo. Yes, I said pack. I need to take my blankie, and monka monkey, and zombie sock monkey and snacks and my purse and my oxycodones (they do not give me pain meds during chemo, but I am free to medicate myself) and my sandals because stupid ass snow is preventing me from getting through this winter without having to put shoes one. Next time my body decides to betray me, I hope it chooses early spring, because having to do all of this during winter really sucks. But back to my issue – if anyone can help me find my missing stuff, let me know. I swear they are right here in the bedroom, but I can’t even keep an eye on the remote control or my phone for more than an hour, so like remembering where I put the backpack two or three months ago isn’t likely to happen.
Anyway, I realize some of you who read this are not on facebook or perhaps done check it daily, or hourly, or every five minutes, like some of us. I had a Dr. visit yesterday, to which I wore the beautiful fox hat (yes, I made it) pictured below:
I thought we were just gonna talk about my blood work, which I would like to announce, looks great. The tumor markers that show in my blood, known as CA125 are back in the normal range with means it appears the chemo is working. I am counting on this round of chemo being the last before remission. So after meeting with Anne and telling her all the things I am doing different this time and how it’s making the sickness easier to bear, she goes to get Dr. K – but she comes back and tells me he wants to do an exam, thus ruining my whole day, because a girl has to prepare for internal exams. I had no time to build the dread that is normally part of being probed. And as if lying on the table, while wearing my fox hat, wasn’t torture in itself, while the jabbing is going on, Dr. K’s pager goes off. Now his pager sounds exactly like the on-call pager at work. The screeching of the angry beast throws me right into a flashback, and I am fearful that they will have to treat me for PTSD. Dr. K tells me he can still feel the damn pufferfish, because it’s still a pufferfish, but is pleased that I am not shrieking in pain while he is doing the exam, which I interpret as meaning this is a good sign. I get another prescription for my pain meds, and more blood work papers and head on down to the vampires in the lab so they can drain more blood (and get my sticker) and then I am set free to roam around for the rest of the day. As per usual I decide what I am hungry for (Five Guys) and drive to go fetch it. I purchase my yummy burger and start driving home, looking forward to shoving it in my hungry belly. Until I don’t want a burger anymore. Now I want a blizzard from DQ. Except they’re close. At 6 pm. What kind of place does this…so now I need to get back on the interstate and drive ten more miles to McDonald’s for a McFlurry. Dinner was served, with a side of french fries, and the burger went in the fridge as the mad craving for red meat had waned.
And now here I sit. I want to sleep, and indeed, I do nod off from time to time, but the decadron makes me hot, and restless. And if I wasn’t having difficulty sleeping already, there are showing a Vikings marathon on the History Channel, in preparation for the new season which premieres on Thursday. I find myself obsessed with it, particularly the soundtrack. It’s like SOA but with horses and battle axes instead of bikes and guns. It even has a Jax Teller look-a-like in Earl Ragnar. I suppose I am also anxious about chemo, and being sick again, but not as much as usual. In less that 24 hours, I will be halfway through this round of chemo. Time to celebrate.
That’s all I’ve got for today. I don’t know when I’ll feel like sitting up again before next week, so if I don’t write tomorrow night, I’ll be back in a week or so. Thanks for sticking around my friends. I swear I’ll try to have my full sarcastic temperament back soon. You have no idea how much energy you exert trying to be funny. I might even try live blogging tomorrow. Maybe even video. But for now, I must rest. As should you. Good night, my friends. Be well.
UPDATE: At 4 am, after a second load of laundry because I can’t sleep, the back pack was located, in only a most obvious place. Next challenge – finding the ipod. Which is probably in a very obvious place as well.
18 February 15 | Categories: c-monster, Craftasms, Feminista, Philosophizings, Picture Perfect, Profound Insights, Random Rambling | Tags: anxiety, cancer, chemo, chemotherapy, cyst, endometrial cancer, exam, flying monkeys, hats, medication, pain, side effects, sleep | 1 Comment
For the first time ever, I completely scrapped the post I was writing and decided to start over.
I’ve started and stopped writing entries several times these past two weeks, (there’s extra bonus writing at the end – a longer post I started and didn’t want to keep writing so I’ll just slap it on the end of this one as a bonus). I don’t know what’s keeping me from writing – anxiety, exhaustion, procrastination – I mean I know it’s not because I don’t have anything to write about. Sometimes I think that I avoid it because I don’t want to have to keep whining about this cancer nonsense. I just can’t help that the stupid monster inside of me just kind of pervades my thoughts every day.
I do think of other things – like getting a pet goat, what book I should be reading, how I wish I had a maid, how I am hungry for brownies, that the season premiere of Vikings is next week, how I would rule the world when I am Empress of the Universe, calculations for the diameter of watermelons at the store – you know, important things. It’s not that I don’t want to write – I do – but half of the time, I find myself slipping into medication-assisted sleep, and the other half, I nod off, unmedicated. Some days I am all fired up about some social issue, I get ready to write and then I get distracted and next thing you know, drool is slobbered all over my cheek and my own snoring wakes me up.
Which is exactly what happened after I wrote that last sentence – I fell asleep, laptop in lap, and woke up this morning at 7ish. I had my wonderful morning cancer killing tea, and just finished some yummy oat meal. I realize I have little to complain about this morning – I feel okay, I can make tea in my bedroom with my loverly keurig, and oatmeal too. I am warm, and comfortable, and I can just spend the day doing nothing, which is what Saturday is often about here lately. I’m still undeniably anxious and restless about next week’s events but I’m grateful that I have such amazing health care that I don’t have to worry about the financial side of this. This whole cancer thing does put things in perspective, but I’m still not in that “live every minute as though it was your last” mindset. I am still too scared about what is to come to get there.
But let’s move away from this cancer nonsense and talk about what is going on in the world. I am sure we all know it’s cold. Well those of us in the snowy areas of the northeast do. My county has finally established a foot hold for a shelter for the homeless, but it’s causing quite an uproar because the shelter is part of a store front in the business district of the biggest town in our county, or I guess what has been formerly known as the county seat. The frightened townspeople are afraid that the existence of shelter will lead to more homeless people. Really? Like a funeral home would lead to more dead people? I often wonder when stupidity and hatred became the norm. Why is there so much opposition – I mean there’s already a drug and alcohol rehab on the main thoroughfare, and we still have the same amount of salt heads as ever. The homeless are still gonna be here, people…they will just squat in vacant buildings or spend the day in the library or the night in a laundromat or Wal-Mart , doing what they need to do to keep warm and alive. How stupid people are that thinking helping people who are in danger of hypothermia or frost bite will lead to more people wanting to live on the street. I just have such a hard time reconciling the emphasis in this area on being good Catholic and Christians and then in the next breath not turning your cheek, but rather turning your back on the people who need your christian charity the most. I feel like hell when I am driving my fat ass to work and I see someone walking in this cold, and people here are too worried about their “things” than they are about another person. These are the same people who will wax poetic on the value of a fetus, until that fetus is born and homeless and grows up in poverty. Then they will call my office and ask someone to go out and “take those kids away” forgetting that this was one of those fetuses that they insisted be born into to poverty. End of soapbox tirade. I have others, I’ve just decided if I am going to post anything, it’s gonna have to happen quick.
Round 4 of attempting to finish this – this is just an example of how tired this stupid chemo makes me. This is my fourth attempt to finish this post. I fell asleep three different times. Even after I drank coffee This is why nothing gets done around here. I get all excited with plans, I get all the stuff out for whatever project I have planned, and then before I know it, I’m under a blanket, dreaming about being attacked by a vicious and violent kitten I am supposed to be pet-sitting. Needless to say, that did not improve my opinion of cats. But on a night like tonight, being warm in bed with many blankets is not such a bad thing. Of course, since Andy is out on the road somewhere with friends tonight after a hockey game, I am now awake because I am worried about his safety on this hellishly frigid night. I couldn’t fall asleep easily anyway, with this howling wind. My multiple layers of blankets on the windows isn’t even keeping the icy breeze off my adorable bald head. I don’t want to text him because I don’t want him checking his phone wherever he is driving considering there is little visibility with the blowing snow. I just hope he had the sense to stay put wherever he is. Motherhood. It’s like an itch you can’t get rid of.
Well, since I have failed at humor and don’t have much else to write about until after my Dr. visit on Monday, I’m just gonna put this lame excuse for a blog post out of its misery. But not until after I share this facebook post from a young man who was one of my students when I was teaching at Lebanon Valley College…it’s nice to read these things when I often wonder if I have made a difference in this world…and according to this, I apparently have:
Everyone please keep Diane Pietkiewicz in your thoughts, prayers, etc. I’m not one for religion, but I’m making an exception and praying to the big guy. Diane is the most memorable part of my Academic collegiate experience. Best professor ever. She consistently made me look at the big picture, taught me never to settle, and that the history of our nation is far from that which we’re taught in highschool lol. She is fighting a bullshit disease, and deserves all the support in the world!
And since Joe talks about praying, I just want to say this…all of you lovelies should know by now that I tend to follow Buddhist philosophy, rather than religion. I am not one for praying although I do chant daily but I do appreciate prayers, in whatever faith and form they come in, because I believe in the power of focused attention. For me, putting positive vibes and thoughts out in the world can’t do anything but good, so I am grateful for whatever words or thoughts you put into action. I spend time every day visualizing this damn puffercyst inside me shriveling up and dying. So pray on, or chant, or just think good things. As a matter of fact, I am really grateful for everything people have done/are doing for me while I endure this latest go with chemo – everything from offers to run things up from the netherworld of the office so I don’t have to, to sending me surprise packaged, to simply asking me how I am. And I apologize for not being as shiny and happy everyday as I have been in the past – I try, but as I’ve whined about, I am so tired all the time. In fact, today as I was rolling over in bed, I realized I would have made a damn fine bear. But not a polar bear, because apparently they don’t get to hibernate. But a grizzly. I would be a fine grizzly. I could be a panda too, but they aren’t really bears, and they also don’t hibernate – but they are pretty lazy, which if me right now.
And with that, I shall try get comfortable and warm in bed, while I wait to find out if my kid is safe. I tacked on the post I tried writing the other right at the end of this one – I promise to try and rein in my adult ADHD next time and stay awake from start to finish when next I write. So stay warm and dry my darlings. Bonne nuit.
(I started this on the 29th of January, or so)
On the first day after chemo, chemo gave to me…so far, nothing that I can’t really complain all that much. I ate some chili (not always nausea friendly, but I am not known for always making the wises decisions), had some tea and ginger beer, and some nuts. No fever, took a couple oxycodone and a zofran (super effective anti nausea drug) and I am drinking water like a camel ready to hit the desert. Of course, that means I am spending a lot of time running to the bathroom, but if it means I don’t get sick, I’ll do laps. Andy cut off his dreads today and then I buzzed the rest of his head, because he wanted to show his solidarity in the current situation. He was pissed that I buzzed the last of the zombie grinch or some other weird Dr. Seuss character hair without him, but I explained I couldn’t go out in public to chemo looking like that…I love making and wearing funny hats, but hats get hot pretty quickly inside, and frankly, I love my bald head. It’s a weird time of year to be bald because it’s freezing outside, so when I am in the cold, I need to wear a hat, but at home it comes right off, and now that I don’t look like I wondered out of a nuclear bomb blast, I won’t be wearing hats indoors at all except to make my doctors, nurses and small children laugh.
The day was long yesterday, my doctor was running late and then I found out my co-pay went up, and I got to chemo late. It was quiet on the infusion unit yesterday, but the day was fun since my friend and co-worker Heidi took a vacation day to drive me to chemo and hang out with me. We played the Chupacabra: Survive the Night Game which could be very fun in you add alcohol and make it a drinking game. Otherwise, playing to best three out of five is enough. But between the game, and conversation and people watching, the day went quickly. My nurse had a bit of hard time getting my IV started…she didn’t want to go with the vein I thought would be a good choice at first, so she tried my hand – no go. She then decided to try around where I thought would work, and hit one, but today it has a huge bruise, which doesn’t typically happen for me, so on my point scale of 1-10 where ten is I feel nothing and 1 is “oh my god are you doing this for the first time????”, she only gets a 4.8 downgraded from the 5.2 or 5.3 she got yesterday. I knew I’d have a bruise on my hand, but I didn’t think I would have on my inner arm. (as of February 14th, I still have remnants of this bruise) It doesn’t hurt, it just looks ugly. But the doctor did say that my blood work looked good and I looked good and let’s just see what happens by the 3 cycle to see if this thing shrinks, and that it’s important for me to just stop what I am doing when I get tired, and walk away from it. I know I don’t now, because when I am at work I don’t think like “I’m sick” and just do the work, and exhaust myself so I suppose I am just going to have to remind myself my body is in a fight, and I need to put it first. Alas, I also need to work to have health insurance and to pay the premium. I am very excited about my first paycheck since December tomorrow. I am going to do something crazy with all that cash…like pay rent.
And speaking of crazy, a couple weeks ago, there was a contest on the facebook group, Saving Money, Living Smart, that I belong to…at Christmas, there was wish list to put on the items that you wish you could get for Christmas, and I put down a Keurig. Well a couple weeks ago, the group owner asked a few of us if we got our Keurigs, and then had a second chance contest to nominate someone who we felt deserved it. Well I felt I did…I mean, especially today, the day after chemo, and then next week, when Andy is sleeping after work, and I am too sick to get out of bed myself and I want a cup of hot tea and can’t go get one and have to wake him up. I don’t know if anyone else entered me too, but I told my story about how I found out about the cancer two days before Christmas and blah blah blah, and today, the FedEx guy shows up and what? Whoa. I now have Keurig from Saving Money, Living Smart and the Keurig Company. How awesome is that? As soon as Andy gets up from his nap, I’ll have him take a picture of me and my Keurig…what a great surprise and what perfect timing. (Even though I bitched all the way down the steps about who was knocking on my door because don’t they know I am resting.) This is fabulous…I can’t wait to take it out of the box and check it out once I get a picture. I just need to get one of those reusable cups for my ginger honey tea. I am excited. (and that’s where I fell asleep that time)
15 February 15 | Categories: c-monster, Philosophizings, Profound Insights, Random Rambling, Soapbox | Tags: amusement, chemo, chemotherapy, cold, cyst, endometrial cancer, flying monkeys, gratitude, postivity, sick, side effects, sleep, snow., tea, tumor | Leave a comment
So hey there happy peoples, what are you all doing for fun tonight?
Movies? Bars? Sleeping?
Me? Oh just combing out hair nests, and itching from straggler hairs that end up all over my back and then in weird places – I’m barely going to have enough for the mohawk tomorrow – it’s going to look super weak, but oh well, the hair has to come off. Little known cancer fact – losing your hair doesn’t hurt, but your scalp is super sensitive and hurts for a while until it toughens up. I have to make a few hats to get through the hairless phase intially, because I didn’t lose my hair last time until April I believe, and by then, it was warm enough to go hairless most days. I still have all my hats from last time, both the ones I made and the ones given to me, but an encore of cancer calls for new hats. I’m gearing up for the next few freezing cold days ahead too.
T-4 days until my next 3d live chemo encounter in HD with HY. We are gonna play the chupacabra game! I have to see what other games I have to take too…good times ahead. For the record, chemo day itself isn’t the worst day, because you get pumped so full of fluids, drugs and other goodies, that you actually feel pretty decent that day…and sometimes even the next day, but by the second day after, it’s a nightmare hellscape. Needless to say, the days before are riddled with anxiety. But can I focus on my fears? No, of course not, because in the background the TV is droning so I don’t get lonely, and there’s a commercial for some sort of vagina freshening product that alleges a woman will gain swagger if her vagina is freshened daily with some spray or powder. Swagger? Really? How do I get a marketing job, because seriously, that’s about the most stupid commercial I have ever had to see. And what followed it? A commercial for adult diapers, encouraging me to wear a diaper in solidarity with those who suffer from incontinence. So wait, I am supposed to freshen my vagina to go buy diapers so people with urinary problems know I support them. My life doesn’t need to be this complicated, I have my own struggles!
I don’t really know what the point of my writing this evening is – I’ve been trying to keep myself busy so as not to dwell on the week ahead. I started making a poncho. I pinned stuff I’ll never do to pinterest. I planned to make other shit. I cooked and ate a pork chop. I cooked up some chicken and potatoes to make curry tomorrow and zoned out to Lifetime movies. So clearly, I must be suffering from anxiety. Part of it is the low grade fever I have had for two days – I want it to be gone so I can go to work Monday and Tuesday, and most importantly, not have it delay my treatment on Wednesday. I’ve been slugging back water to make sure my veins are super juicy for visiting the vampires on Monday, and when the nice nurse goes poking for a good vein on Wednesday. Another curious chemo fact – the vein used for the iv for is not the normal wrist or inner arm or back of your hand – it’s usually somewhere on the side of the lower arm, and if you get a really good nurse, she’ll get it the first time, because she (or he) will poke around with their finger until they are sure they have a good one. I have only had one miss in all my treatments so far – and she realized it right away. But according to the nurses, to insure juicy veins, you need to drink drink drink water the DAY before, not just the morning of. So if someone is going to stick a sharp needle of poison in me, I am certainly going to make it as easy as possible for that person to get it right the first time.
I think I am just kind of having the realness of what’s happening to me sink in. Up until now it’s been a bit surreal. But when my hair started coming out after only one treatment, it was like, hey ho, it really is cancer again. I made it through four days of work this week, and the last two were tough because by noon, I was wiped out. I keep thinking my body isn’t busy fighting a battle against cruel invaders, so I am just fine, but I get home and my legs are swollen and achy and all I want is sleep. Ok, eat and sleep. I’ve been stuffing feelings all week. Today, not as bad as the rest of the week, but man, when I found that Irish soda bread, it was game over. I can’t just eat a piece of it – nooooo, I have to keep picking at it until only crumbs remain. And it was delicious. There’s few things as delicious as Irish soda bread. And it’s a fine balm from what ever demon is clutching at your throat.
Tomorrow, Andy has said he will be joining me in the clean head club – I told him he doesn’t have to shave his beloved dreads – he’s worked so hard on them and they are actually starting to look okay. Not that I like them, but I know it’s a big sacrifice for him. Then I will try to vacuum up all the loose strands of hair that are EVERYWHERE. The best thing about losing all my hair is that I won’t have to wake up coughing up a hairball everyday. You think I jest? Not even. Practically everything I have eaten in the last week features at least one hair. Even tea. Tomorrow, I eat hair free, once again.
So that’s it, or all my psyche will allow me to address tonight. Time for me to try and sleep…the wind is howling out there, so it won’t be easy. Please keep sending me good vibes…the support is felt and appreciated. And to all of you who have sent me cards, thank you. I love cards. Even if you make it yourself. Cards are fun. They remind me of my pop-pop…but that’s a story for another day. I keep them all in a box and look at them, and not just cuz I’m a hoarder.
Pleasant slumbers my pals, may your dreams not be filled with hungry flying crocodiles and mirror that duplicate you into an evil clone. Don’t ask. XXOO
PS. I used the lovely sheep picture because there’s a serious lack of cartoons on line that are about chemo and funny.
25 January 15 | Categories: c-monster, Philosophizings, Profound Insights, Random Rambling | Tags: anxiety, cancer, chemo, chemotherapy, endometrial cancer, fear, funny, HAIR, hair loss, hats, hospitals, random, side effects, sleep, treatment | Leave a comment
Update on my new year’s resolution(s): I was unable to refrain from reading comments on articles posted on the interwebs. #resolutionfail. And this entry includes the name of the town in which I live. Let’s hope facebook doesn’t read my blog and find out.
I’m doing better. Not as insane as I was just six days ago, but not nearly normal either. I made it to work this week – three days in a row. I was in the office on Wednesday and had training Thursday and Friday. Next week I am planning to do a full week in the office, then Monday and Tuesday of the following week, and then it’s time to roll up the sleeves, pump up a vein and get down with the mad chemo party. Chemo buddy for the next adventure will be the lovely Heidi Y, and I am way to excited to be able to bring and play the Chupacabra dice game with we are there!!! Yay!!!
I’m struggling a lot with anxiety at night lately – this is new to me – I’ve never had this kind of panic/terror/unsettled feeling before. My legs are mad restless, and then as I close my eyes, all kinds of madness creeps into my mind and BAM, I am wide awake and trying to find a way into sleep. Last night I tried to meditate, listen to some talks about lovingkindness and the only thing that shut my mind down at approximately 3 am was a coconut vodka eggnog and two percocet. Yes, I know it’s not the wisest combination or something I should use on a regular basis, but hey a girl has got to sleep. I try to unwind in a myriad of ways – not a single one worked.
It’s a day later, I’m still writing this entry and it’s again 3:30am. I’m having a lovely hotcocoavodka, listening to some classical music and trying to write myself to sleep. I was going to read myself to sleep, but then I couldn’t find my glasses – until I got out of bed and settled down in the writing chair to write. I’m still having anxiety. I’ve realized that my body is also out of control with hunger lately, that too is partially anxiety. The other part is my body stocking up for the next great famine. As for the anxiety, I can feel it in my shoulders, my stomach and neck. It’s hard to be “ok” when your body is being a rebel.
There really isn’t much more for me to write about tonight – I mean there is, but I’m not feeling it. It’s like it just wants to stay bottled up inside – maybe it’s waiting for me to be funny again? To write better? To not drink vodka? Who knows, but I know that this is the best way out of my head for me. I can’t even describe how different this whole experience is this time – it’s so much harder emotionally and psychologically. I hate being a reader. I hate being curious – it turns up way more information than I am ready to handle. I know that much of what I learn is really not applicable to my situation, but it’s still now in my head. That is why I am trying to turn my intellectual pursuits in a more spiritual direction. No, I’m not begging God to heal me – not that I mind prayers, because they are positive energy that I need right now to help scour my body of this nasty annoying disease – rather I am seeking a way to center all this fear and anxiety. To find my spiritual core again – I shouldn’t freak out in the middle of a lovingkindness meditation because cause I can’t forgive myself and love myself completely while I am still blaming myself for choice I made in my 20’s that may or may not have contributed to cancer in my, well, my later life. And bam, writing that hit the crux of everything. I’m blaming myself – for my cancer coming back – was it negative thinking? Was it poor food choices? Is the laptop on my belly causing radiation to make cells grow? Is it negative thoughts? Too many sexual partners? Poor health care? Eating ice cream? Birth control choices? Hamburgers? I can’t accept that this is random and keep blaming myself, irrational as that is, that my negative thinking and bad decision making caused this and the only way out is to get back to a better spiritual core and man, I suck as a a human being.
And there it is, and now you see visually what writing this blog does for me, other than give me a place to randomly make commentary – it lets me keep picking the scab of what I am trying to bury until I make it bleed. And when it bleeds, as painful as that may be, I get to let go of a layer of self-blame and self-doubt. The other night as I was meditating, I couldn’t get to the place where I loved myself unconditionally – I know that this is an issue for a lot of people, but I couldn’t let go of the big grey concrete block keeping me from forgiving myself and being able to love the wondrous, loving and generous person I am – the creative and funny and intelligent being – the person who has a spirit of adventure and sense of magic – because all I could see was the person who made some less than stellar choices in my 20’s, choices I don’t regret, because they are the reason I am who I am and if I had made other choices, my life path would be completely different, but I still can’t get those monolithic barriers out of the way so I can love who I am completely.
~ Newsbreak ~ 4:11. One of the drunk ass neighbors on Lloyd St is making his relationship issues public in the middle of the street. I am always torn between being a lookie-lou and running to the window to hear more and just hoping the police arrive and make an arrest. I usually go with the latter, and I am tonight. I don’t understand the people of this town, at least once a night, somewhere in the two block radius of my house, someone is always in the street between midnight and five am, having some sort of argument, involving screaming, daily. The only time I don’t hear it is when I have the AC on. And it’s winter, so no luck there. ~End Newsbreak ~
So yeah, back to my inadequate self, and my loathing of it. I believe tomorrow it may be time for a list here of my good qualities. And some clean up in this cave I call a bedroom. Some day, I will have my own studio, with a real desk, and storage for my mountains of craft supplies, and I won’t be all jam-packed in one room with it all like I am now. I wish I could apply some of my incredible life-coaching skills to myself. I am so good at helping others get their lives together, mine, not so much. Then I put off doing things until I shit in order, which I then don’t, and then I have just a mountain of unfinished projects and snakes of yarn everywhere. I just need a giant dumpster that seals itself shut after I toss stuff in it right outside my bedroom window. When did I become a fucking hoarder? When did I get so attached to my material shit?
I think it’s time to go now. Otherwise, I will start to analyze my actions and I want to sleep at some point. Sorry again for boring you with self-psychoanalysis. I’ll get funny again, I promise. But for now, I must finish my cocoa and crawl back into bed. Since I found my glasses, I will be starting to re-read “Awakening the Sacred Within” – I’m going to shoot for a book a week. For now my friends, this is it – and although boring, this entry is at least, somewhat shorter than most. We are almost one month through this winter thing! So, bon nuit mes amis. I was going to say don’t let the bed bugs bite, but for those of you in the child welfare system with me, that will simply evoke itching because we’ve all had to encounter the little critters at least once in our illustrious careers. Sleep well my friends. And remember to send those cancer killing thoughts my way. xo.
18 January 15 | Categories: c-monster, Philosophizings, Profound Insights, Random Rambling | Tags: amusement, annoyances, anxiety, cancer, challenge, chemo, chemotherapy, children and youth, choices, endometrial cancer, fear, flying monkeys, friends, life, lovingkindness, meditation, psychoanalysis, rant, restless, sick, sleep, sleeplessness, tired, uterine cancer, vodka | Leave a comment
If you woke up to birds singing and cuddles and happiness, click that X in the top right corner and get the fuck out of here now. I’ll give you a few seconds to escape.
Still here? Well I am not responsible for how you feel all day if you read this. I’m giving you fair warning.
Okay, fine, the choice is yours, but you will be sorry. I am, and I am writing the shit.
I started having panic attacks yesterday. Serious sobbing, full on snot slinging, not enough tissues in this fucking box, I can’t catch my breath panic attacks. I am still having them, on a less severe scale than last night, but isn’t that how horror works? The most terrifying things live in the dark and no amount of light, sunlight, electric, candle, is gonna take the terror out of it.
I am still sick. I want to get the fuck out of this house today, and just go somewhere. Anywhere. No, not anywhere. An ocean – okay, Pacific ocean where my tears can get sucked into the gigantic vastness that oceans are. It seems like it’s been months since I got this news. It’s only five weeks, but it seems like forever. And all at once it seem like it all happened so fast. And here I sit again, with a fucking cancer garden dying deep inside of me. (That’s right you nasty poisonous bastard, you’re dying inside me, because you have no right to be there) It’s so very different this time – last time I was all like, okay stupid cancer, you will be gone in six months. The second time, you’re not so cocky. I mean, I was supposed to have made it past the recurrence window. This little monster sprouted and started taking over in a two month window. I know what my stage is, I know what my odds are, I know that it is definitely possible to win again, but it’s a 1000x more scary the second time. And a second time where they can’t just do in and cut it out like last time. I have to live with it inside, knowing that the only way it’s going anywhere is if the combination of chemo, positive energy and visualization of it vanishing make it go away. Stupid cancer. It takes so much more than your health.
Yeah, I am strong, and brave and have the guts to take this on again. But I am also a tearful mess who is so scared I am not gonna be around to see the way life is supposed to play out. What if I am not to see Andy get married? To see my grandbabies? To see my niece graduate or my nephews get married? I am not afraid of dying. I am afraid of what I’ll miss. What I thought was in my future and what might be so unfairly snatched away from me now. Oh sure, I know you’re thinking, well miss fucking sunshine, that’s not a very positive attitude! You’re right, it’s not, but it’s a very real one. It’s whats’ gnawing at the back of my mind 24 hours a day. Most people are afraid of dying – I’m not. I’m afraid of leaving. I know I will always be connected to the people in my life now, we’re all energy, we all are connected, but I am not done with this life yet. I have plans. I need to retire in Bali, I need to join the Peace Corps, I need to make a half-assed attempt at surfing, I have several more tattoos planned, I need to drive cross country and couch surf a few months on the west coast. I still want to get a PhD, and teach. I am not pleased that my plans are compromised by something completely out of my control. And in my mind, I rehash every doctor visit, every test result, every procedure and I wonder why the fuck I can’t win the lotto, but cancer II? I win that. How could it just show up like that? What did I do wrong? And believe me, I look back over my life, at every less that stellar choice or thought I had over the last several decades, and wonder what I am being punished for? It seems like every questionable thing I have ever done is being returned to me in the form of a nasty little parasite that is eating me up from the inside.
I didn’t even think it was possible for a human body to hold so much snot. Where does it come from? I am so scared this time. I have never been this scared. I feel like a caged animal. The chemo sick is so much harder this time – five days later and I am still tasting metal and not sure whether or not food is going to stay down. I am out of effexor – this is probably part of my non-stop panic attacks, I know I have a prescription bottle in this house somewhere that’s half full, but I can’t bend over to look for it, because I feel like hurling. Every joint in my body hurts, and motrin, tylenol and percocet are like a roulette wheel to see if one will actually help. I can’t get the weird chemo smell out of my nose, no matter how many bazillion times I blow it. I think my blood is part ginger now. It’s the only thing that keeps me from spending my day huddled over the bathroom sink. I lie down one minute and feel fine, and then in five minutes, my stomach is cramped up so much, that I want to unhinge my jaw and tear my stomach out. And, for comic relief, how about a post-chemo fart? Toxic clouds are less vile. Dick Cheney is less vile. As if you aren’t sick enough already, your body attempts to suffocate you in a noxious cloud at random points throughout the day.
At least the crying has slowed down. Blood tests tomorrow. Woo hoo. And I have two more weeks before I have to go through this nastiness again. I really feel for that 17 year old girl who wants to refuse her chemo – how is it more compassionate to put her through this when it’s not what she wants. I’ve already had the conversation about quality of life vs. quantity with Andy and my brothers – if it ever gets to that point, I’m cashing in my retirement, buying a surfboard, renting a car and driving to California, buying as many edibles as I can eat without freaking out in paranoia, paddling out and waiting for a great white to eat me after it mistakes me for an elephant seal. I am not dying in a hospital, all weak and sickly, it’s gonna be on my terms. Morbid, yes, but when have I truly not been? Really, I continue to watch Meet The Press, and I know how that’s gonna end every week, and yet I go back.
So next time you want to tell me how brave I am, or how strong, just remember that I am also a very scared and tearful little girl, wishing someone would save me from this monster. Facing this a second time is not about a fight, it’s about getting up everyday and doing what I have to keep from being paralyzed with fear. When I smile, it’s because I can’t rub my nose anymore or the skin is going to come off. When I make jokes, it’s because I’m scared and I need to find a way to cope. I’m gonna keep coping – I have to – it’s not time to give up. I’m not a survivor – that’s a fucking stupid word. I’m a person who has a fucking obstacle ahead – I may not overcome it, but I’m still gonna try. I’m also smart enough to know if at some point I have X years or months left, I’m not gonna waste that precious time trying to give me 10 extra sickly days, when I can have 5 days of fun. Look out Disneyland if that happens. Or Ireland. Or Bali. Or all three, and Peru.
You were warned to not read this. If you’re crying or horrified, that’s on you, not me. This is my blog. I have to face this shit down daily, and this is my process. This is how I sort through the rapid firing shit in my head that just won’t stop. You only have to read this once, and never again. I’ll be the one having a breakdown during Fairly Oddparents or Iron Man 3. I can’t promise that I won’t be maudlin or dramatic in the future either, but I can promise that I’ll do what I need to do to get through today, and tomorrow. Like my friend Debbie reminded me, these are the real feelings, these are what people with monsters inside them really do feel, and it’s ok. OMG, where is this fucking snot coming from???? It has to stop sometime!!
So that’s that. I’m gonna try to slog down another ginger tea. And check to see if my prescriptions are ready. And maybe take a drive. It’s a beautiful gloomy day out there, and if I can unswell my eyes, maybe I’ll go hang out among the dead for a few hours with my camera. Or do laundry. The mundane shit goes on, even when you’re having a meltdown.
Enjoy your Sunday, mes jolis canards aperçus! (use your google translate if you must know)
PS. To all of you wonderful friends, who call/text/message me to see if I need anything, thank you. Mostly I don’t need anything – I don’t really eat much lately but these are things that I always can use: Fresh turmeric root, Ginger-Honey Crystals, Reed’s Ginger Brew – Regular, Premium, or especially, Extra Ginger, Ginger Ice Cream, Anti-Viral Tissues, and bottled water – but not Arcadia or whatever the store brand at Boyer’s is – I don’t care what people say, water has different tastes depending on where it comes from. And sesame crackers. My food tastes are really different this time, and what I am hungry for can change hour to hour. If you are worried about Andy starving, don’t be, but if you insist on feeding him, there’s nothing the boy won’t eat except mushrooms. Well, he’ll even eat certain types of those, but he also gets random drug tests at work, so no thank you.
11 January 15 | Categories: c-monster, Philosophizings, Profound Insights, Random Rambling | Tags: anxiety, blackness, blood, cancer, chemo, chemotherapy, cyst, death, depression, diagnosis, disease, doctors, dying, endometrial cancer, family, fear, flying monkeys, food, ginger, hope, insight, malignancy, ocean, pain, panic, plans, procedure, sick, surgery, survival, toast, treatment, turmeric, uterine cancer | 3 Comments
Who ever said ignorance is bliss should have a monument erected to them. I believe I would be so much happier if I was stupid. There’s a price to be paid for knowledge, and for having information at our fingertips on the internet.
I won’t belabor the issue – my most recent CT scan (yesterday) report appeared online last night. In addition to having a ridiculously low and almost non-existent level of thyroid hormone (I knew it was low, but this was way below the low end of the measurement scale) I had the joy of reading that the former pufferfish has, in less that four months, become superpufferfish xl. That’s right, the pelvic mass that we all thought was defeated in a previous episode has not only recovered but has evolved like a Pokemon, say like a Igglybuff transforms into a Jigglypuff (see images below). It is now the size of a pink grapefruit or softball instead of a common baseball. And being that it is a holiday, and my dear Dr. K is out of the office until Monday, and probably did not feel compelled to check my medical records at midnight as I did, will not see the transformation until Monday, and they are not going to call me until Tuesday. I know my treatment coordinator saw it, because she called me about the thyroid thing, and left a message about that, but nothing about the SPFXL (Superpufferfishxl). Back to the waiting for the news.
Of course, as is typical, I use the sacred interwebs to research this evolution. Things that grow so fast are often malignant. The only positive I can derive from my online inquiries is that there is no change in the nearby lymph nodes or other organs, which is a good sign. Whatever it is, I will deal with it, but I hate being in the no woman’s land of not knowing. I can feel it fighting with the other organs nearby for space, particularly my bladder and stomach, and it is annoying. Not to mention the pain it is inflicting by its inflation as it rests on the nerves in my lower spine and coccyx. (I should state that I love the work coccyx). Either way, it is going to be jabbed and poked and prodded with sharp needles and cutting tools, and it’s gonna mean that there’s gonna be no Riotfest in my future because I’m gonna have to take time off for hospital visits.
And I’m scared. That actually goes without saying. To deal with the fear, I’ve been binge eating because nothing conquers fear than a package of limeade oreos, Chinese food and coolattas. Which makes me more uncomfortable. But I am letting myself have the 4th of July to wallow in self-pity. Tomorrow I’ll take an extra effexor, and get out in the world and see some babies I don’t have to take away from selfish, self-absorbed and self-indulgent adults, and remember just how strong I am. And see fireworks. The world is a better place with fireworks. Or explosions. Explosions are good too.
Celebrate the day, my little firecrackers.
4 July 14 | Categories: Picture Perfect, Profound Insights, Random Rambling | Tags: anxiety, cancer, challenge, ct scan, cyst, death, diagnosis, doctors, endometrial cancer, fear, flying monkeys, funny, hope, humor, jigglypuff, life, mass, pain, pokemon, positive attitude, restless, treatment, uterine cancer | 4 Comments