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
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
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