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’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