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
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 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
I made myself get out of bed and shower this morning. Blame the sun, all warm and golden, blasting through the multiple blankets that I use as curtains during the winter (over the real curtains) to block out the delightful breeze that cools my head which comes through these old windows in my bedroom. (also the reason I can hear every dog-damned word that is spoken/yelled/chattered in the street outside which is why I am sitting here typing instead of sleeping because I took two pills to try and sleep and no sooner than I was sliding into blissful opiate dreamland, inconsiderate people arrived home at 11:30 and had to make sure they slammed ever fucking car and house door they could find while merrily chattering all the way, and ruined that attempt.) So here we are.
In truth, I was going to write this entry early. Then I didn’t because I was consumed by a wave of darkness and to avoid contemplating the sucking blackness, I took a nap. However, after showering, I decided I needed to waste half of a tank of gas and get out in that sunshine and try and dispel the gloom that is wrapping itself around me like a blanket with static cling. I tossed on some sweats, a hoodie, and flipflops, because it is spring you know, and was at least 35 degrees, and out I went. I plugged the phone in for music, and then headed out to the valley. Driving around mindlessly while singing loudly always seems to sort things out, one way or another, so drive it was. I decided I wanted a peanut butter milkshake and a hot dog from Sonic, so I headed in that direction. Of course, my music of choice was loud and fast, as it usually is, unless I am trying to enhance a black mood, when we turn to something in the way of Elliott Smith. But today I needed to sing loudly about pain and depression and sorrow, past regrets and hopelessness, which would also be Elliott Smith, but without the painful plaintiff beauty of his chords. When I hit the quarter mile on the Brandonville Road, I laid my foot down on the gas as took it as it was meant to be driven, easing up as I hit the decline. It felt so good to be out, with the sunroof open, and have that minute or so with nothing more on my mind but that feeling of speed and screaming the lyrics to “Keep Falling Down” loudly, frightening the birds and friendly woodland creatures in earshot.
One good thing about winter is that it covers a lot of sins. Like garbage. Now that the snow is melting and everything is still dead dead dead, all the trash so carelessly tossed out the windows of cars is heaped along the roadside in the little streams of melting snow that run along the road, and around dead deer carcasses. Carcasses, carcassi? Whatever. The Ringtown/Brandonville valley roads are beautiful in spring, summer and fall. In winter, they leave something to be desired. Driving them brings up a lot of memories – from trips to the dairy to get milk with my dad and siblings, driving past the first home I ever knew but can’t remember at the #5 damn, picnics at Stauffer’s park when my parents would spend the day arguing and the kids getting splinters from the rickety old wooden merry-go-round, summer vacations “back home” when I was living in California when we would drive all day, cooler in the back, listening to a mix of Springsteen and Led Zeppelin, and top 40 and that new “punk” music I brought with me from California, and late night drives with quarts of beer between our thighs, laughing and carefree. And hours of driving and thinking. It’s my go to to try and sort shit out, just like driving the coast in California was – well not exactly, because well, oceans make everything better, right, whole. But drive I did. To Sonic. Got my milkshake and some popcorn chicken with barbecue sauce because I hadn’t eaten yet to day. And which I later regretted, because it wasn’t really chicken per se, just some chicken like substance with coating. Should have just stuck with the milkshake.
Anyway, as I drove I noticed that many more homes in the area are littered with shit. No other way to describe it, because it’s just like extra stuff that people own that they won’t throw away but have nowhere to store it so it’s just outside their houses in different states of decay. And I started thinking about whether the outside reflects the inside, or if these people don’t care how their house looks, and when did we start being so concerned with collecting so much stuff that we don’t even have enough places to store it. I always used to envy the houses in the valley because they were so neat and tidy, so pretty, and always wished I could live there, to be away from our too small, too old, too mismatched house. To play in a yard with grass. To not be surrounded with ugly black coal banks everywhere (for you young ‘uns, there was a time when our little town was in the midst of gaping scar of strip mining, surrounded by slate banks – much of that is covered with trees and shrubs now). The valley was where all the happy people must live. Now, I’m not so sure.
Anyway, in my critical analysis of what these signs of decay and garbage mean to society as a whole, I realized it was spring. And spring means robins. I must now find a robin. (Fact: Robins, while not seen much in the winter, do not migrate, they just stay huddled together for warmth. When spring comes, they emerge to seek food – robins are individualistic birds. They only get together to mate and survive winters).
This is now a quest. There are crows. Hawks. Geese. Red-winged blackbirds. Sparrows. Chickadees. No robins. (or bluebirds, for that matter) Where are the robins? I am not going home until I find one. As I continue to meander, I drive past places with memories, still trying to deal with all that is going on in my head. I figure that cemeteries, with their vast open spaces, will be a prime source of robin findage. I head in that direction. Then out of the corner of my eye, I spot a red breast, but I am driving way too fast to clearly confirm robin sightage. I am fairly certain that it was one, but until I can definitively confirm that it was robin, we shall continue to drive.
People who know me, know that cemeteries are like one of my favorite places in the world. I love the peace and sanctuary of cemeteries. Unfortunately, and in my opinion, oddly, the cemeteries are still mostly snow covered despite the last two days of sun, and their clear open spaces with direct sunlight. Much of the snow elsewhere is melted, but not really in the cemeteries. And no robins. I do notice a tombstone of a friend’s husband – her name is on it too, waiting for her. I think how odd, that your space is already reserved. Not that I don’t have plans for my own death rituals (which some of you will now be please to know, no longer include Andy having to chop up my body for the vultures to eat for a traditional sky burial, but do now include my ashes being made into bottle rockets and other firecrackers that can be launched into the sky). I am also looking for a trash can now as well as robins, to get rid of the evidence that I have been to Sonic. I check three different cemeteries, and nope, no robins. Just crows.
I’ve been driving for a little more than two hours now. I have managed to negotiate the roads well, missing all of the deepest and widest potholes. I feel bad for feeling sorry for myself just because I have cancer, since my drive has reminded me that many of my friends have recently suffered tragic losses in their lives and illnesses in their own families, and that there are people who live in countries that have no electricity or water. Some watch their families slaughter or live in countries at war where their homes could be torn apart by missiles or a tank at any moment. And here I am whining about having cancer. I need to be slapped. Don’t get me wrong, I am still depressed. I still feel hopeless, and scared and angry. But I am starting to see that it’s not as bad as it is for some people in this world. I decided I am going to take one more road to see if I can find robins, and then head home. My world is dark right now, but I’ll get through it. I’ve been through darker and more painful times, I’ve faced fear before. I just wallow a few days and get over it. But first, I need that robin.
I drive past the spring where we’d get water in the summer and wash cars and drink beer alongside the road outside of Brandonville. I remember being very stoned and listening to the Cars debut album over and over. And being very wet. We washed a lot of cars there when we were teenagers. And drank a lot of beer. I cruise through Mahanoy City, remembering a time when it was a pretty town, much like Shenandoah used to be, but now is just old and tired, full of rotting/abandoned/decrepit/burned out buildings, and covered in the grime of the coal region. I drive out towards Frackville, past the prison, and co-gen plants, sad that this is what’s left for this area. And then I see it. A fucking robin. No mistaking it this time. A fucking robin. Mission Accomplished. It’s all hopping around, looking for food on a partially snow covered lawn. Boom.
And I headed home.
Now I’m here. I am not sure how I feel, but I know I’m going to work tomorrow because I already promised to cover intake for someone since it’s Monday and they need to be in court. And I’ll be there Wednesday, because it’s a morale event, and I said I would bring cream cheese. Thursday we are headed to Pittsburgh to see Off With Their Heads play and stay at my brother’s condo. Friday, we are going to the Warhol Museum, and I don’t know what else. Saturday, we are going to see Pennywise in Philadelphia. Now this may seem like an expensive week, but the tickets for OWTH were only $12, and the condo is free. Pennywise tickets were only $25, and Andy is paying for those as well as for the Warhol Museum. We need to do something fun, to get us out of this rut we are both in. Fortunately, we like many of the same bands, so it’s something we can do together. So at least I have something to look forward to this week – and next week is…drum roll….CHEMO and another stretch of being confined to my bed for a week while I try to like the way water tastes. Life could be worse, and that is what I am hanging on to. Because when I lie in bed, tossing, it seems like there’s not but a black hole that’s sucking me in.
My friends, it appears that most of the neighbors have finally gone to bed, and the next sound to wake me up with be newspaper delivery in about 4 hours. Fortunately I had a nap this afternoon. Tomorrow is work, and more blood tests (it’s CA125 test day) and I get two stickers this time, because last time someone was in the sticker room when I was done my blood draw, and I couldn’t get one. I will have to share a pic of my prizes in the “no sticker, no blood” collection. I’ve got all kinds now, and will have to start another sheet soon. Hopefully, blood sucking will be followed by dinner with my shark sister Ashley at this Himalayan restaurant we both want to try. So there are things to look forward too. Life doesn’t suck that hard, I guess.
The itching of my eyes indicates I should rest, particularly since I still don’t know where my glasses are. Hopefully, writing tonight will keep me from too much tossing and turning. Sleep well my loves, and pleasant dreams to you all, and happy Monday. Be a busy worker bee.
23 March 15 | Categories: c-monster, Philosophizings, Profound Insights, Random Rambling | Tags: amusement, annoyances, anxiety, bald, blackness, cancer, carnivorous kangaroo, chemo, chemotherapy, death, doctors, dreams, driving, fear, flying monkeys, hope, life, road trip, robin, sadness, sick, sleep, snow., sorrow, spring, sun | 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
There’ something dead in my throat. I am guessing it probably crawled in while I was snoring and became trapped and slowly met its demise. Whatever it is, it’s really nasty and it adds to the nasty metal taste in my mouth that I cannot get rid of. Apparently, I forgot that you don’t get used to chemo as you move further into treatment, you just get sicker. And I am – I am still not up to getting out of bed and driving to Hershey to do my blood work, but that will change tomorrow, because I can’t put it off anymore.
This whole chemo thing is getting boring. TV is boring, being sick is boring, drinking tea is boring and this weather? It sucks. If I ever get cancer again, it better be in the fucking spring, because somehow I think if I could go sit in the sun for a few minutes a day, I’d feel better but alas, I am trapped here in the tower of gloom and clutter with nothing to do but toss side to side and hope to slip into drug enhanced sleep.
The chemo is killing my sense of humor too. I suppose part of that is because I am trapped here in solitary. Of course, I crack myself up, but I am a captive audience. A captive audience with no energy to escape. I did manage a shower today – and I made some toast, so I guess that’s progress. I just feel like my brain is turning into jello – I haven’t had any serious academic conversations in days, nay, months. I feel like a jumbo hamster on a squeaky wheel, just going around and around, with occasional escapes into the real world, until I am captured by the chemo beast and shoved back in the cage. Even pinterest doesn’t hold my attention for things I will never make or buy the way it used to. Red pandas only amuse me for a short while, and alpacas, well they just make me long for a house on the beach. I have this list of things I could probably make while sitting here if only my eyes would agree to stay open for extended periods of time. I mean things have gotten so bad, that I don’t even turn off Hoda and Kathie Lee at 10 am anymore, I just suffer their stupidity. I even find myself watching the 700 Club more than once a week and that doesn’t bring any laughs either. Okay, well it did today, when the only man who I believe is Pat Robertson told some viewer that it was okay that their daughter did yoga, but only if she didn’t chant afterward, because that’s the worship of Hindu gods. The funniest part was the seriousness in which Pat Robertson tried to mimic the chant. I guess you had to be there.
Anyway, I am gonna keep this short, because being in the tower and watching reruns of Kitchen Nightmares and the Middle don’t really make me the wicked conversationalist. I did however watch some show on the History channel last night that has had me thinking all day. Apparently, mummies have enough DNA in the remains that once the technology is available, we can clone, or reanimate them. Now – stay with me on this – the scientists state we aren’t that far off from being able to do this. I mean we have already injected human brain matter into the brains of mice successfully. Reanimation could quite possibly involve retaining all your memories and experiences of your previous life, and then you would start adding new ones. Would that be a good thing? I wonder. I mean some things you want to forget. And if you remember the past, does it also mean that all your ailments and illnesses are also with you? What if you died a particularly painful death? Would you remember that? And would you be reconstituted in the same state you were when you mummified? Would you want that? Would you want to relive all the experiences you had all over again or would you want a fresh start? I tend to believe we are energy just moving from one form to another, so I don’t know that I would like a restart for this life, if I was already dead. Wouldn’t you always wonder if you were still the same as you were, or if something was missing, or damaged? No one who knew you would still be around, so how would you know? And isn’t the choice of whether you come back or not, taken from your hands by whoever manages to bring you back to life? It seems like an easy question at first, but it’s incredibly complicated when you really think about it. I know there are people who have passed in my life that I would never want to have back in my life again, and then there are people I would love to have back, but I’ve moved on, and would they fit into the life I have now? And what about these mice with human brain bits? What do they do with them and whose brain bits are they inserting in there? And what if they escape and start reproducing? Are these random combinations ever a good thing? Maybe we should worry less about GMO corn and more about these human-mouse hybrids. Think about that.
Well that’s all for now my friends. I’ve exercised my brain more than expected today, and I have some ice cold killers in Alaska to watch now. Have a wonderful afternoon, and wish me luck on getting to Hershey for blood work tomorrow, because I need another sticker for my collection. Plus I am sure the vampires miss me. Until next we meet.
24 February 15 | Categories: c-monster, Philosophizings, Profound Insights, Soapbox | Tags: afterlife, amusement, anxiety, bald, bear, blackness, brains, cancer, carnivorous kangaroo, chemo, chemotherapy, death, doctors, flying monkeys, hospital, rambling, random, science, sick, side effects, sleep, tea, treatment | Leave a 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
Hi there kittens!
It’s Tuesday. I’ve made five days of work so far. Woo hoo. I even manage to get through an intake, complete with the funnest amount of paperwork EVER! I can’t wait til next week!
I know, I know, my joy is infectious. Which is surprising because my hair started to fall out yesterday when I was busy showering for work and believed that I had been attached either by leeches or wet black snakes all over my body. Turns out it was just chunks of hair. You really can’t notice yet, and I am hoping it stays that way until at least Friday night, because if it lasts that long, I am having Andy shave the sides and I am gonna rock a mohawk this weekend. There’s definitely not enough left for liberty spikes, but hopefully I can get a really wicked mohawk going this weekend. Maybe I’ll even color it with some kool-aid for old time’s sake. This will probably be the last time I will ever dare a mohawk, so mark your calendars.
Much discussion was had yesterday about the impending loss of eyebrows as well – if you have followed this blog from the beginning, or if you know anything about hair loss from chemo – you will know that you lose ALL your hair. Legs, arms, pubes, eyelashes and eyebrows along with the hair on your head. I don’t mind the legs at all. Having no eyelashes is odd, but no eyebrows weirds me out too. I didn’t do anything last time about them, but I am going to this time. I don’t want to draw them on, because that just doesn’t work for me, but I might glue some on, or maybe crochet some, or use fuzzy fake caterpillars. Think of the fun when I drop one on the floor at work…EEK caterpillar! Nope, just an eyebrow. Think of all the things I can put above my eyes in lieu of eyebrows. Plastic farm animals. Spaghetti, cooked of course. Orange slices. Gummy worms. Duct tape. They can also come is different shapes – like a big V between my eyes to scare people. Or just one raised eyebrow. Or I can attach them to my glasses. For a change of pace, I can attach them to the back of my head, just to keep it interesting. It will be nice not to wake up with a mouth full of hair in the morning, or have to drag the nest of hair out of the drain. It takes at least 5 minutes off the time it takes for me to get ready in the morning.
In less exciting news, I found out that in my quest to make sure I had mid-length disability insurance I elect for the coverage that would last until I was seventy. Unfortunately, that means I need 90 unpaid days before it will kick in, instead of 15. FML. I am less worried about money than I am keeping my health insurance – if I were to lose that, I’d really be fucked. I am blessed with excellent health care coverage. But you know me, ever the pluck entrepreneur, I’ve got some stuff to make and sell if I find myself really desperate for cash. And no, I don’t mean my painkillers. Or Meth. Speaking of making things, last time I lost my hair, I made fancy little hair animal sculptures for those who so desired them – I hate to waste perfectly good hair. So if you would like a rabbit, or a puppy, or perhaps a lemur (they are all gonna look the same, I will just give them exotic animal names for your enjoyment) leave me a comment on this here blog, and one can be yours, gratis. I will even mail these special trinkets for those of you who may live on the favored coast, if you find you can’t live with out one. The one thing I am a touch negative about is, that when my hair comes back, it comes back curly, and I hate looking like one of the hair bear bunch (see below)
I took a brief interlude to do some eyebrow research and as you can see there are a lot of creative options. I did not know, but wasn’t surprised to find out, you can also buy stick on eyebrows made with hair, for that realistic look. I am pretty sure I will find a better alternative. Like fur. But for your viewing pleasure, I provide the following collage. I’m quite fond of the black eyes of death. It will give me that Uncle Fester look I so covet.
Also during my little break, I finally checked my blood tests from yesterday to see what’s what. My CA-125 marker is lower than earlier this month, which is good, but still not in the normal range, but I will take what I can get. Other levels are lower than last time, and lower in a not so good way, which means I will either get a bag full of liquid vitamins and stuff at chemo, or, the dreaded neulasta shot. Let’s just hope I can get them up a little with better food choices by next Monday. It’s amazing what the internet can teach you, and while also filling you with dread. Like when I looked up CA 125. It’s the marker in your blood for ovarian/endometrial cancer. It was only slightly elevated in this test – two weeks ago is was about 10 points higher. Which means the chemo seems to be doing its job. Well, of course it is, my hair is falling out and I am tired as shit. Until this month, I didn’t know what a CA 125 marker was. I didn’t what a lot of things on my blood test meant. Now, I know – and believe me, I could have gotten through life without having to know, ever. But I do, and I imagine, am wiser for it.
I am trying to get back to healthy eating once again – I had made the most beautiful taco salad this morning with the other half of the marvelous avocado I had yesterday. I was swinging my bag on the way in to work and out flew the salad. A sad, sorrowful mass of spring mix, perfect avocado, sweet yellow cherry tomatoes, taco meat and beans all lightly dressed with some sour cream, like a healthy oil slick on the office floor. And since the healthiest of lunches was destroyed, I had to eat cookies for lunch, and a bag of chips for dinner. We’ll try again tomorrow. I’m still a little broken up over it.
Well that’s about it, happy people. Tomorrow is hug it out hump day. I am limiting my hugging lately because, I am not sure if you know this, but people are germy. Like until you have to be careful about being around the infectious, you don’t really think much about germs. Now there are certain people I will conscientiously avoid, because they don’t wash their hands. I constantly use hand sanitizer to the point that I have icky dry patches on my hands. Last thing I need right now is the flu or a cold. I have also manage to get past some of the anxiety issues keeping me up at night. I slept a solid six hours last night. Go me! I’m going for the big six again tonight…so I must bid you all most pleasant dreams and restful slumbers. I’m hoping for a snow delay in the morning – it’s unlikely, but a girl can dream. And let me know about those hair sculptures. Peace, lovelies.
21 January 15 | Categories: c-monster, Philosophizings, Picture Perfect, Profound Insights | Tags: anxiety, bald, cancer, carnivorous kangaroo, chemo, chemotherapy, cyst, flying monkeys, food, funny, happiness, hats, hope, humor, insight, sick, side effects, sleep, squirrels, surgery, tumor | 1 Comment