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
Never fear, I haven’t abandoned you. I have tales to tell – it’s just been a bit of celebration and whirlwind of things happening since the pufferfish was deflated again and I was enjoying the last six painless weeks, with nary the need for pain medication. That said, I’m a tad down at the moment, and needed to write the following, and though I thought I’d keep it private, hell, why not share, I mean, you’re already familiar with my former uterus.
Stay with me dear ones, I will be back to keep you spellbound with happier tales than what follows. But today, I am sad.
I can’t remember the last time I wrote you one of these letters that I couldn’t send if I wanted to, but the sadness that lingers at the end of summer when the days are perfect but growing shorter reminds me of you. And it may be coincidence, but I keep seeing things that remind me you’re gone but still hanging around, if that makes any sense at all. I miss you. I miss having one person who knew the darkest side of me and one person who understood my innocent joy. I think of what it must have been like in the last moments you were here and if you knew you were about to leave or if you made that choice. Everything changed when you were gone.
It doesn’t seem like there’s a day here when I don’t think about you. And in my mind’s eye, we’re 20-somethings with not a care in the world, scheming, and whether we’d seen each other the day before or months apart, the world was ours when we were together. And in my mind’s eye, I remember every detail of the day it crashed around me.
I wish I could mail this letter to you like I did so many others – tear stained, or gleeful, excited, full of wonder, sharing every detail of my broken hearts and plans for the future – fat envelopes, stuffed and sticker-covered and keeping me connected to you despite thousands of mile and minutes. Stories of new adventures and days I wanted to close my eyes and have it all be over.
I know it’s a matter of time until we find our paths crossing again. I thought it could be in this lifetime, but probably the next. Just know I’ve never forgotten you my friend. And I am still mad you left me, but I understand that it was time for you to go. I just wish I could have one more hour to put my head on your shoulder and cry until you were covered in snot and slobber, and have you take the hurt away for little while. Fucker.
26 August 14 | Categories: Profound Insights, Random Rambling | Tags: afterlife, alcohol, amusement, annoyances, bear, bears, blackness, carnivorous kangaroo, cold. flying monkeys, death, depression, dreams, flying monkey, fresh, fun, happiness, joy, laughter, overdose, pain, pufferfish, rambling, random, regret, restless, sadness, sorrow, survival, thingsIlove | Leave a comment
Attention whore. That’s right. I don’t feel much like writing today – I think I am headed into the lull period of my bipolar writing syndrome. That’s not to say that I don’t have much much much more to say, just I don’t feel like being a sparkly wit tonight. I had to fight the cold today. My car doesn’t have heated seats. And I had to wear socks. Under boots. Which is like Chinese footbinding to me. So to delight you in a new way (and meet the challenge today of my 30 day blogging challenge) I will embed some of my pinterest collections into this post:
NOTE: I don’t know what happened to the first and best version of this entry…wordpress lost it somewhere and now I am sad. This is a rewrite. I apologize for the diminished sparkle.
First, here are some pretty things to look at. Some pictures feature the artwork of Andrew Goldsworthy. There’s an amazing documentary about his work, which are pieces he creates with items found in nature. They can be very complex and stunning and will make you want to stack rocks in the woods no matter how cold it is tomorrow. My favorite pin in this collection is the llama in the car. It makes me smile.
Madness, Mirth and Mischief
This next one features all the dark creepiness that brings me joy. The things that bring a smile instead of a nightmare – gothic my pretty ponies, clothing from McQueen and Westwood I’ll never afford or wear, dream wedding cakes for the imaginary wedding, and cemeteries. And scary dolls. And more scary dolls. And skulls.
Finally, more pretty things. Pretty pretty things. Because other things are pretty besides crows and cemeteries shrouded in fog.
And if you want to follow me on Pinterest (and a surprising number of people do, I guess because I don’t scary them away with my psychotic ramblings) go here:
That’s all lovelies. I hope that you enjoyed a visual foray into my brain, and if you ever want to see my collections of cemetery photos, JUST ASK! Be well, have a happy hug it out hump day and stay snuggly my sweetlings.
7 January 14 | Categories: Picture Perfect | Tags: creepy, flying monkeys, fun, funny, happiness, joy, positive, pretty, squirrels, thingsIlove, thisismylife, zero to hero blog, zerotohero | Leave a comment