Well happy people, it’s my birthday month. It’s also time for seasonal affective disorderr to rear its ugly head. The time of year when everything dies and I feel the urge to sing along with Morrissey and Elliott Smith. But surprisingly, increasing my antidepressant seems to have stayed the invasion of winter blackness for now. I tried taking my new dose for a few days, and it made my head feel all scrambly, so I decided I will alternate every other day, one old pill and one new pill. What, you say? How dare I disregard my physician’s instructions? I do it all the time – I know my body and brain better than any doctor, especially my brain, and it says I’m doing what I need to. Although it also was nice that my new palliative care doctor agreed with my method of medication administration.
Oh yeah, you want to know how that went, right? Surprisingly well. I really like the Dr. – she reminded me very much of my good friend Jess, with her manor and her tone, and I felt very comfortable. She was also very cool about my morbid sense of humor, and asked all the right questions without being intrusive. She is going to get me hooked up with a counselor who I can vent to on a semi-regular basis who will listen without trying to make me feel better and who will not give me “sad face” or pat my fucking arm. This is very comforting. We talked about end of life planning, what I should look for in terms of my disease taking a downturn, living wills, and what would be “my line in the sand” in terms of when I would say enough with treatment, and again, it’s quality over quantity. Her office will be the one I call for pain meds and if any new symptoms come up, or I want to discuss options for care. I got all the paperwork to make Andy my power of attorney and provide a living will – I hesitated to fill it out at first because I wanted to make sure he was okay with making those decisions. I don’t know who else I could trust with them – I don’t know how many people would honor what I want without question. Andy said he’s fine with it. All I know is that I don’t want to be come mean and miserable and trapped in a hospital bed to die. If I have no control like I did when they forced Dana inside and drilled a hole in my kidney, that’s one thing, but if there are options, I want to be in control of when and how I leave this particular life cycle. My biggest fear is to find myself unable to say “turn those fucking machines off’” and being a human vegetable. Okay, my biggest fear is being buried alive with clowns, but that’s my second fear.
I’m feeling better lately. I had a few days of a being a bit out of it after my flu shot. My joints are achy today, but I don’t know if it’s because of the flu shot or because I was cleaning in my lame, not a lot of energy way. I managed to clean a 4′ x 3′ area today, and do a load of laundry. I am getting better at throwing things away. You can’t even begin to understand what it’s like to have to think about holidays in the context of will I even be around to use this next year? Or things that I was saving for one reason or another, I now look at and say there’s really no reason to hang on to this anymore. It’s liberating and sad at the same time. Don’t get me wrong, I’m not miserable over it – it’s just thoughts and emotions and they are all just temporary. Just like not that long ago I didn’t even want to be awake, and I just kept reminding myself I only needed to get through today, until the blackness receded and I got my ass out of bed and started moving again. All I am hoping now is that: 1. They pull this tube on Tuesday and 2. That when they pull it I don’t end up in bed for 2 or 3 days like the last torture session. The benefit is on Saturday and I still have some straightening up to do, and jello shots to make. The California girls get here Friday, and then the fun starts. We’re going to Shady Maple on Saturday for breakfast before the benefit because those silly Mennonites don’t work on Sundays and they’re closed. Good times. Maybe this time I can get a stuffed black mamba or maybe a vampire deer for my collection. Hmmm, Paige is getting my scary baby collection after I’m dead, I wonder who have’ll dibs on the stuffed animal predator collection. I know Andy doesn’t really want a stuffed komodo dragon or wild african dog.
I try really hard when I am around people who give me sad face not to talk death. The problem is that it’s constantly on my mind. With that said, it’s not like it’s all doom and gloom and I’ve accepted that outcome as final and non-negotiable. I think anything is possible – I think about my stupid pufferfish every day and visualize it growing smaller and smaller and picture it vanishing. I think about how the human body is an amazing self-healing machine and if it’s meant to be, I’ll be around as long as it’s necessary to learn whatever I was supposed to learn in this life. There are no real certainties with this disease. I mean nothing was worse after cyst drainage – things actually improved with the departure of Dana and the impending tube removal. Yet you don’t ever stop thinking about what is happening in your body and trying to figure out was this something that you brought on yourself, or is it just one of life’s lessons. You start trying to figure out why this is happening to you. It’s such a rollercoaster and right now it’s like I am standing in line for my next go round.
Then there are the multitude of questions – am I doing enough? Should I get a third opinion? Maybe I should stop eating bacon and candy (gasp). More fruits. Veggies. Get back on my tea regimen. While I was checking in at the Cancer Institute the other day, there was a sweet old lady behind me who asked me about my OWTH hoodie – as we started talking we both discovered we were patients of Dr. K and both adored him. We started talking about second opinions and how it felt like we’d be cheating on Dr. K if we got one, but that people around us encouraged us too. She has had ovarian cancer for over 5 years – and it was nice to talk to someone who has a very similar stupid disease. We went our separate ways, she off to do blood work, and me, off to my appointment. I have to say I am not as fond of the new offices as I was of the old. Maybe because there are people with all sorts of cancers in the waiting room of the new offices, and some of them are very clearly very sick, and it reminds me of what is to come. I don’t want to be that person. It makes me uncomfortable. It also makes me glad that Dr. J left Hershey before I found out about the recurrence. I am glad he never needed to know that the cancer was back, and he got to leave thinking I was cancer free. Although I wonder if Dr. K ever mentioned it to him, since they were friends.
I know I am just rambling now. I want so badly to go to sleep but I had a bit of a row with Andy earlier and of course it was right before I was to fall asleep. Naturally, I got fired up and sleep wasn’t going to be coming anytime soon. Of course, he’s upstairs snoring, and I am down here trying to get my brain from firing on all cylinders so I too can snooze. I am both excited and stressed about the benefit on Saturday, and then the next week is my birthday. Of course, I want it to be a fun filled day, because I don’t know if there’ll be another one – in my gut I believe there will be, but I don’t want to wait to celebrate until I find out. I know this all sounds sort of sad, but trust me, I really am in mostly a good headspace right now – these are all just thoughts that I am stuck with every day, and they no longer are good or bad, just are. On the good news front though, Ranae’s mom had a pet scan and has no new cancer and can stop chemo – which is fabulous news. When I told Andy, he said, well let’s hope you’re next. Let’s hope. Today is one of those days where I feel I can face anything that is ahead. I appreciate these days because I know the other days when I feel like the floor has dropped out beneath me rip out my soul. If there’s one thing this fucking miserable disease does, it teaches you that there is a very broad spectrum of emotions and states of mind out there, and it will make you feel each and every one of them.
Okay, finally I feel like I can lie back down and curl up to sleep. So far the evil Tamoxifen is not giving me too much trouble with hot flashes. While I still get them, I believe the increased Effexor is keeping them in check. I still play the blanket game every night, and I still wake up damp with sweat every morning, but it’s not so bad during the day. The one thing I really hate about Tamoxifen is that it make my boobs bigger than they are. I really miss my perfect B cup boobs from the time before Andy. I hate slinging these things around, tucking them in to bras and then releasing them like Kraken when I get home and can take the boob harness off. But again, I should watch what I say before they become a source of pain and anxiety.
And now I must depart for my bed. I’ve finally watched all of Season 3 of Hemlock Grove, which just left me anxious for the next season and now I will have to wait for what seems like forever. So now I just watch reruns of last season’s Vikings and hope the new season starts soon. I’m still making pumpkin hats and making some cards tomorrow, and going to finish coffinizing the babies tomorrow. I’ve only got 8 more to go. I forgot how many I really had. Lots of babies. I did notice that one of my babies is missing her rat and another his bloody cleaver. And when I went to take them out of the storage bin, some of them had taken their shoes off. I wonder what was going on in there. I hope no one tries to steal one of them at the benefit – I’ll have to cut off their hands. I also thought about offering my gargoyle collection for table decorations – I forget how many creepy things I collect. So scurry off now, and enjoy your night or day, or afternoon, as will I – and keep sending the good vibes. And for those of you who send me cards, please continue – I love getting them in the mail, and they always seem to come at a time when I need them most – especially the ones from Jeanne. I’m sure I’ll be back later this week before this benefit to tell you all about how I was brutalized and made to cry by the kidney people when they go in after my tube. This time I’ll be taking the oxycodone with me. Delightful dreams my friend and happy adventures. Peace.
2 November 15 | Categories: c-monster, Philosophizings, Profound Insights, Random Rambling | Tags: afterlife, anxiety, benefit, c-monster, cancer, cards, carnivorous kangaroo, chemo, cyst, death, depression, endometrial cancer, flying monkeys, fun, kidney, medication, pain, pufferfish, sleep, uterine cancer | Leave a comment
I once asked to be tested to see if I was bipolar. Alas, I am not. I know it’s not a really cool thing to be, but I was just hoping for a rational explanation for my occasional bursts of mania. Like today. However, I believe that it must be the result of getting sufficient sleep and upping my effexor. I’ve been super weepy the last few weeks, probably because I wasn’t sleeping, and under a lot of physical duress, but the last three nights have been heavenly.
With that little intro, let’s dive right in to the Dr. appt on Monday. The new course of treatment is to alternate Tamoxifen with Megase. We all know how I feel about Tamoxifen, (and why I am procrastinating in taking it today) and Megase promises to be a joy too. So I am two weeks on Tamoxifen, then two weeks on Megase and then switch back. Both are going to fuck with my endocrine system, and Megase has the added bonus of weight gain, which is just what I need. I suppose it’s a decent trade off for a healthy holiday season. I got the vibe from Dr. K that he recommended that I do this treatment first before we consider infusion because it may be the last healthy Christmas I have, so why fuck it up. I’m okay with that. It was a good appointment, and I made it clear that I would prefer in the future to have my cyst drained first before we start shoving tubes into my bladder and kidney. He said his job is to keep my kidney healthy – I said I get that, but please, lets avoid the catheter forever. This visit’s minion med student was cute, she kept apologizing for the fact that cancer and the catheter/nephrostemy killed my plans for Riot Fest and The Fest, and made me miss the Bouncing Souls and Leftover Crack. I told her she was not responsible, but she kept apologizing anyway. Even when I almost ripped her head off when she said “so I understand you refused chemo before, are you willing to consider it now?” and I had to again explain I never refused anything, I simply asked for a delay if it wasn’t going to exacerbate things. Poor child. I was still sleep deprived at the time so I think she thought I was about to tear into her throat and rip out her artery. Anyway, I made her laugh and then she stopped being scared. I go back in January at which time we look at the next step. As for the pufferfish, I know it’s busy attempting to get back to its monster size, I can feel twinges and jabs, but I still have complete use of my bladder, so I’m down with sucking up the pain. And I want this tube out of my back in six days, so I will do what it takes. There were no scans this time, because they will do a scan when they yank the tube – unfortunately they aren’t like the cyst draining radiologists who show me the pictures live and all the goop they drained out. Dr. K found my excitement with seeing all that shit hysterical.
For those of you who have never dealt with chronic pain, you don’t really get what constant pain does to you physically and mentally. It keeps you in a heightened state of stress. Your body never really relaxes. My jaw is constantly clenched. Medicating it only does so much. You find a good position and you don’t want to move so you stay as still as possible. You do a lot of sucking in your breath and hissing. My situation is accented by the hole in my back that is constantly trying to close itself even though the tube is preventing it. And let’s not forget the promise of painful terror that’s on my mind when I think about them trying to remove it. Because they are going to lie to me and say they will give me a local to block the pain. And I will half heartedly believe it until they make me scream and leap of the table. It’s a game we play, the radiologists and I. Let’s hope it’s the last time.
I’m in a pretty good mood. I am super excited that my California friends will be arriving in a little more than a week. I have missed them every day I have been gone. It’s going to be quite the reunion. I’m keeping my drinking to a minimum though, because I want to keep these kidneys healthy and happy so it’s gonna be all about the water for the next two months. I see palliative care today at 1:30. I will probably not be the happiest I could be when I get back, but it’s a gorgeous rainy day, and I am going to enjoy the drive because I love how the rain makes the tree bark black against the last of the fall leaves. And fog, there will be fog. It also means idiot drivers, but I don’t think they take my blood pressure today so there should be no freak outs in the Dr’s office. When I went in on Monday, my initial blood pressure was 177/100. I told them to take it later and it was 138/80, which it was clear that it was high because of idiots on the road. After that, I am going to hit the nice wal-mart in Palmyra today because I need a few things. And I also want to stop and score some whoopie pies for Ranae because apparently someone’s band found the ones she had in the freezer. I have to get some for the California girls too, so they can take them back with them. By the way, according to the scale at the Dr. office, I lost 17 lbs since last month – it was probably a lot more but my two week binge of drinking a half-gallon of chocolate milk a day put some back on. Still that’s a lot of weight – just another 20lb and I’ll weigh what I did when Andy was born. Then only another hundred until I am back at pre-pregnancy weight. I’ve decided it’s time to lose the skinny clothes, because at this point, the likelihood of ever squishing back into my plaid pants is slim. I even went as far as getting garbage bags to put them in. But then that burst of housecleaning energy went out and I decided to blog.
Sorry this is so mundane today, but I’ll take it. I’d like some normal days. I’d like some time when I don’t feel any pressure. And once this tube is out of my fucking back I think I might even schedule a weekend away so I can go swim again in an indoor pool. You have no idea how the knowledge that I may never swim again, or take a bath or enjoy a hot tub was weighing on my mind. It’s one thing when cancer kills your goals and dreams by stealing your time, but it’s a whole other ballgame when it steals the little things too – like walking and swimming. This disease is such a huge mind fuck…the psychological destruction is really overwhelming. When you start to lose options in your life, the things you have left become all that much more important.
One thing I did want to rant about today is more about Andy than me. People tell Andy to be strong. That he has to be strong. He doesn’t. He has to be Andy. I will be strong for me. Andy can be strong for himself if he wants to be, or not. It hurts me that people have made him feel like this is his battle too – he is strong, but he’s also human, and he feels fear and uncertainty like the rest of us. Those are valid emotions and he needs to know it’s okay to have them, and to sometimes be okay with being terrified. Telling either one of us to be strong is bullshit. Both of us need to be able to be who we need to be to get through this shit. Everyone has that right. You get out of bed in the morning and you do what it takes to get through the day. Some days are good and some are bad. A week ago, I didn’t want to even get out of bed. But I said “just get through today.” until I could get out of bed without having to be my own cheerleader. It’s not about strength, it’s about will, and being able to stay in the present moment. I do what I have to. When I decided I no longer need to do it, I won’t. As I have said before, it breaks my heart that my kid isn’t able to enjoy being a 20 something because I am sick. I know the weight of having a parent with cancer, as I lost my mom at 27. I wish I could save him from all of this.
That said it seems to be time for me to hit the shower and head out to Hershey. Maybe I will post again later after the visit or maybe I will be too upset to do it, who knows? But I suppose I need to take that stupid Tamoxifen too. Have a good day monkeys, and give someone you love a hug. Or someone you like. It is #hugitouthumpday after all. Peace.
28 October 15 | Categories: c-monster, Philosophizings, Profound Insights, Random Rambling | Tags: alcohol, cancer, chemo, chemotherapy, endometrial cancer, flying monkeys, friends, happy, hospital, pain, treatment, uterine cancer, whining | Leave a comment
Go get your tissues, cuz it’s gonna be sad. Sorry. I really didn’t want to write this tonight, but my brain won’t let me sleep despite all my efforts to turn it off until this is in black and white on my screen.
Today was doctor day, in the new offices in the Cancer Institute. Heidi came to pick me up and take me to the dr. Andy wanted to know if he should come, but I told him no, he didn’t need to stay up all day and just get cranky waiting and get no sleep. The news would be the same whether he was there or not. We got there kind of early, and then waited about an hour after my appointment time before I was called. By that time, my “relaxation” medication had worn off, so I was clear and lucid for the visit. Damn.
There were an alarming number of cranky people in the waiting area. It’s not like the Hope drive office, where all the patients were women. My dr.’s new clinic is in the same area as the infusion suites and the labs in the cancer institute. It really only makes sense because he’s not just the gynecological oncologist but the surgeon, and the Hope drive offices were alll the way across the hospital campus from the hospital and the Cancer Institute. But it’s change, and change is uncomfortable. And there were really sick people there. And people who just wanted to get blood drawn. In my head, I am trying to guess the type of cancer that has attacked them. I see some women in wheelchairs and on scooters, and not just for fun, but because they need them, and I think…I don’t want this to be me.
When they call me, the nurse takes Heidi and I back to an exam room. At least she didn’t ask me when my last period was. She uses the medieval torture device of an automated blood pressure machine to take my blood pressure which registers at a scary 150/110 or something. Not normal and not good. I’m feeling fine, so I blame the machine. Those machines always get it wrong. Now, the scale on the other hand, it got it right. Even better than right, because after slurping down a pint of Ben and Jerry’s and tortellini sandwiches and chips and peanut butter m&ms and Chinese food and Taco Bell the last few days, my weight was actually down, instead of up. I am friends with this scale. After the nurse, in comes a minion. Very nice minion, but very tired. I tell her my story, I tell her I’ve seen the scan, I know it’s bad, and I want to stop taking tamoxifen because I hate hot flashes. I also tell her to tell Dr. K no chemo until November if that’s the option. She asks me if I get nauseous to which I respond, no, I smoke weed, there is no nausea. She laughs at my forthrightness. I tell her Dr. K knows, he just doesn’t put it in the medical record. We review meds, blah blah blah.
And in comes Dr. K. Wellm he actually tried to kick the door in, claiming he tripped, as he was coming in. I ask him how bad it is, and then it gets all kind of surreal. I can see on his face, no bueno. He says it’s larger; I say I know. He reads the report to me, which if I read once, then I’ve read 1000 times since last Monday. I get the feeling he didn’t really look at it closely before I got here. I can understand that when you see 22 patients in 3 hours, sometimes you aren’t as prepared. He’s really bummed, he says he feels like the grim reaper. I tell him I know it’s bad, but like, what are we talking here? I asked if they could drain the cyst again because it’s bigger than ever, and while it’s not causing me more than a 5 on the pain scale, it’s uncomfortable, like an alien baby. Or hey, a pufferfish. He said they can’t do it in radiology again because inserting a needle in to the cancer ball would create the opportunity to spread cells as they pull it out. I can see he’s struggling with this, and I feel bad – I don’t want my doctor to feel so horrible about this. He says he’ll make a referral to urology and see if they can insert a stent. Then we talk a little about options, I tell him I’m down to do chemo again but not until November. I have too much to do in the next two months. He’s okay with that. He wants me back in a month and he’ll come up with a plan. Maybe a trial. Heidi asks him some questions about chemo and stuff, and he says that we can try some other flavor of chemo since the last one didn’t work. I am just happy that he said to stop taking that fucking tamoxifen.
There was no avoiding asking the big question though, and I asked him about time, and how much I have left…he didn’t want to say. He said I would make the OWTH show in September. I said good, but how long, ball park, and again he hesitated and I said I just want to know if I am going to have another summer. I’d like another summer. And bless him, Dr. K. said I think I can get you another summer. And then he hugged me hard. Like really hard. Like the kind of hard that says I wish I could have done something to keep this from happening to you. I like having a Dr. who cares.
I see the urologist next Tuesday. They are filling out FMLA paperwork for Andy and I. I see the Dr. again on September 21st. I was super proud of myself for keeping it together during this visit. I joked. I tried to scoff at the spectre of death. My voice only got wavery once. I checked out without tears, and with another prescription for oxycodone. I even kept it together having a drink with Heidi, and at dinner and the ride home. I almost kept it together when Andy came to unlock the door. Until I had to say “he thinks he can get me another summer/” That’s when I lost it. I couldn’t look him in the eyes. No one should ever have to tell their child that they aren’t going to be around much longer. And every unseen milestone keeps running through my head. I can’t even write about that because it breaks my heart and tears up my stomach. If I have one regret in this life, it will be not be around to see him live his life.
Then the texts – maybe I should call people, I guess, but I don’t want to be all sobby on the phone. Crying isn’t going to change it or cry the cancer out. Mike and Amy and Alan know. They’re the only people in my family who need to know this right now. My dad will be 87 this year, I don’t need him to die of worry about this; he already spends too much time stressing about my sister and her drunken idiocy. And while I am very public about this disease and my life and shit in general, I reserve the right to be the one who speaks for me. I don’t want my siblings to share this with people I don’t know so that people are stopping me on the street. Or asking my friends.
And now it’s blogosphere official. The stupid psychic was wrong about this one…unless something magical happens. I need to get on that passport thing with my next paycheck and start saving for that trip to Ireland. I’ve also got to start getting rid of a lot of things. Physically and mentally. Am I scared? Yep. Will I get through this? There’s no question, good or bad. Even with everything that is uncertain right now, I feel weirdly peaceful that the other shoe had dropped. Weird I suppose.
Anyway, I was a bit peevish yesterday until I got kind of fuzzy and was distracted by a puzzle and did most of an entry about what you should and shouldn’t say to someone with cancer, but it was a touch bitter. Here’s the gist of it, without all of the snark:
- Please don’t ask me how I am unless you have the time and desire to listen. Most times I will say “fine” because I know you are just being polite and I don’t want to burden you, but sometime, I may feel I need to talk about how I really feel. So, if you don’t really want to hear about how I am, just tell me I look good today, or Happy Wednesday.
- Don’t get all weird when I make death jokes or talk about dying. If you are my friend, you know I have always been a touch far on the dark side. I only have two choices for how I will deal with this fucking puffermonster: laugh about it or cry about it. Laughing feels better and doesn’t require tissues, so expect me to joke about it. Don’t tell me we need to talk about happier things – this is my reality and I need to talk about it or joke about it now and again. Otherwise this giant dead elephant is in the room. (see what I did there?)
- Don’t worry about having the right words to say or even saying anything. And don’t try to be positive about it all the time because cancer sucks, and while I try to stay positive, there are days I am very angry at my body and this c-monster. It’s okay to say it sucks to me. And if you can’t find the words, a hug, or a smile, or a fist bump will do. And you don’t need to be sorry. You didn’t cause this. I have a theory about who did cause it but they’re dead now, so it’s not like I can exact revenge. But don’t let our paths cross in the next life. I want every day from here on out to be about laughter and fun. Fun which will involve death jokes.
Finally, I know this is why you all stuck around…there’s an Indian Restaurant in Hershey that opened up on Fishburn Rd called Khana Indian Bistro, and the food was fabulous!!! Very fresh and well prepared and reasonably priced. It’s BYOB, but you can bet that the new highlight of driving to Hershey for medical appointments will be take-out Indian food. If you down there, check them out. The green chili naan and lamb Xacuti were excellent. Service was great, very nice people. And there appeared to be other Indian people there as patrons, which is a good sign since they would be authorities on Indian food. So go there, or if you are in Hershey, text me and ask me what I want you to bring me for dinner. Ha ha.
It feels like typing this drained me, or the stress of today just subsided, or that last oxycodone and “medication” are working but I can barely keep my eyes open. I guess I’ll be writing more often to share the tales of my urology appointments, I know, I know, you can barely contain yourself. Thanks for reading and hey, feel free to use the comment section on the blog, I like to know who was here. Sleep tight muffins!!
18 August 15 | Categories: c-monster, Profound Insights, Random Rambling | Tags: afterlife, anxiety, bear, cancer, chemo, chemotherapy, ct scan, cyst, death, diagnosis, disease, doctors, flying monkeys, food, malignancy, pufferfish, restaurant, surgery | 12 Comments
I saw a dead porcupine the other day, near the center divider of the road, on my way home. You almost never see dead porcupines. I was tempted to go back and get some quills, but decided that it would not only be risky but also gross, and vetoed the plan.
And before we get to the meat of the story, the main event, the moment you have all been waiting for, I feel compelled to inform you that there are certain species of butterfly that subsist on the tears of turtles and alligators. I found the idea of drinking tears rather poetic. And as I was crying on and off most of yesterday and today, I was romanticizing the idea of beautiful butterflies landing on my eyes and drinking my tears. Then I remembered that butterflies are bugs, and bugs are creepy, and that I would appreciate butterflies more as they flutter about me, rather than dipping their proboscis in my eye sockets to suck away my tears. So much for that.
Yes, yes, the scans. You want to know about the scans. Well, I am comfortably medicated now that I can write about it without histrionic weeping. Can you be histrionic if you don’t have a uterus? I don’t know, but for the sake of good writing, let’s pretend we can. You’ll just have to wait while I tell the story of scan day, because there is a story, although it may not be my funniest adventure to the hospital, it was still a bit amusing.
To fully appreciate my day, first I’ll set the stage. The subee needed breaks for over a week. The car would make this horrible woosh, woosh, woosh sound when going forward, followed by a terrifying grinding sound that pulled at the hair at the back of your neck every time you had to brake. It was horrible – it was supposed to be fixed yesterday, but as usual, plans made with my family don’t always work out the right way. So I had to drive the sad subee to Hershey myself.
I was having my CT scan done in the main hospital instead of the CT center at Hope Drive near my dr. old offices. I won’t make that mistake again. At least I still had my “I have cancer” parking pass so I can get premium parking near the building. (I can also get free valet parking but I am too embarrassed by the metallic grinding and whirring of the subee to consider letting someone unused to the sounds of destruction drive her) Unlike the other CT scanner office, to get to this department, you have to walk walk walk walk all the way to the middle of the hospital and then go downstairs and walk some more, whereas the other is just inside the door. When finally I arrived, it was hardly busy, but I forgot we were in the hospital, and that hospital patients get first dibs on the meat slicers, and they only have 2. Which makes no sense, because there’s always people waiting for scans, so a third one would come in handy. I also forgot that in the radiology dept of the the main hospital, there’s no cell service. So I can’t answer all of the text messages I got that morning, even though now would be the perfect time to do so. Once I am checked in, I want to read my book, but dumb ass left her glasses in her purse in the car. My stomach’s been wigging out all night, but I don’t want to go to the bathroom because they will most certainly call me when I do. In the midst of this there’s a great commotion to get the Hoda and Kathie Lee show on because apparently Frank Gifford, Kathie Lee’s husband, had died, and it was an absolute priority of every senior citizen to get the dish. No cell service, no glasses, and depressing TV. This does not bode well.
Finally I am called and shepherded away to the slicers’ area. The nurse put an IV in. The IV itself was painless, but I don’t understand why I must be brutalized with tape??? I know you have to keep the IV in, but for dog’s sake, lighten up with the bandage. Once I am prepped, I go back to waiting. Wait wait wait. Then I get called and off I go to hop on the table. The nice nurse begins her questions, and I tell her I’m a bit of a pro at this, and no allergies, no diabetes, no kidney disease, blah blah blah. And then it’s strike two against getting a scan here again…NO STICKERS. The machine has no stickers. Not a pink bear, or pufferfish or Mufasa or nothing! What am I to look at while the machine scannerizes my insides? Sigh. The nurse explains it’s a brand new machine and they haven’t gotten any stickers yet, because it’s new. I tell her I am not sure I can do this without Woody and Buzz, but strong soldier that I am, I brave it. Slide slide slide, whirr whirr woosh, and I’m done. The nurse removes the IV and then bandages my arm with that cool self gripping tape I love but wraps so much of the tape so tightly around my arm, that I believe my circulation is cut off. And off I go.
I was dreading these scans. I barely slept the night before, and I wasn’t able to have anything to eat before the scan so I’m a bit shaky. Now they are over, and I just have to wait for the results. That should only take a few hours. I wrestle the tape and gauze from my arm to see that I will have several delightful bruises, Yay.
I did some grocery shopping, hung out with my friend Kelly and her boys, ate a donut, stopped to see Jenn and get some more quilts for clients at work, all the while, periodically checking for my results. Why are they not posted? This is making me nervous. Delays are never good, it means they need other people to confirm the results. Finally, about 3pm, the results are in. And I take a peek. And it’s no bueno. I was hoping that there’d be no change, or when I was being wildly optimistic, that the tumors had vanished. I knew that it wasn’t likely since my pain came back, and I could feel the bloating in my belly. But I had hoped.
I’m blogging about it because I’ve told the people who needed to be told. Once again, I am keeping the news from my dad, as well as brothers Leo and Stanley, because I don’t want them to upset pop. I sent a text to Mike and Alan. As for Janie, my “sister”, I doubt she even knew I had cancer the first time. If I am not sporting Andrew Jackson or Benjamin Franklin on my belly and you can use me to buy beer, she wouldn’t recognize me. Not that this causes me any trauma. I didn’t want to tell Andy because his birthday is today, and I knew that for the rest of his life, the day before his birthday was the day his mom told him the bad news. I didn’t want that, but I also couldn’t pretend that everything was ok, or crazier yet, wait until after his birthday for the results. I needed to know too, because if the news was going to be bad, I wanted to make sure I spent his birthday with him, because who knows if it will be the last time.
Oh right, I didn’t tell you want it says. Here’s the gist: pufferfish is now 12x12cm. A bit larger than a grapefruit and bigger than it’s ever been. The tumor on the interior has also grown. The tumor on the outside has shrunk. The cyst appears to be blocking a urether for one of my kidneys, and my bladder lining is thickened which is indicative of disease. There are also two brand new spots on my lungs, which appear be metastatic. Like I said no bueno. Three months of Tamoxifen may or may not have worked because the cancer is still there and starting to spread out in the neighborhood…did the Tamoxifen slow it down? Or did it do nothing? We’ll never know.
Naturally there was a lot of crying yesterday. I don’t see the Dr. until Monday, and I know that I am going to hear things I’d rather not, but it is what it is. I am no idiot, I know this is not positive in any way. It broke my heart to tell Andy, because that’s my only real regret, that it isn’t likely now that I will be here for the important moments in his future. I don’t know if I will ever see him graduate from college or get married (or not) or have grandbabies (or not.) I am scared for him. Like every mother I guess. That’s what made me cry so much. In addition to crying, I was able to acquire a more potent herbal medicine and that in combination with a few oxy turned my frown upside down, or rather, gave me shiny eyes and made me feel all floaty, and numb for a few hours. A very welcome numbness.
There are plusses I guess, I mean it probably means I’ll get to stop taking the tamoxifen, which seems to have done nothing but make me hot, pimply and nauseous for the last three months. And made my boobs swell, which is not a plus for me, simply an annoyance. It looks increasingly likely that I will get out of having to pay back those student loans. And that if I am going to Ireland, I’d better get on it.
Now you know. I’m really very tired, and also very medicated but I wanted this done so I don’t have to answer any questions right now. As I told Andy, whatever happens is going to be okay, because it’s what has to happen. There’s a fucking lesson here somewhere, or maybe this is just getting the crap out of the way so that in my next life I can assume the role of queen of the universe without any setbacks. Or be an alpaca. There’s a strange sense of peace in all of this – the anxiety of not knowing gone for now. At least I have a ton of people in my life who love and care for me, and in the end, isn’t that what matters.
So I’ll leave you with this…hug your people in your life. Hug them a lot. Hug your friends, and laugh.
12 August 15 | Categories: c-monster, Philosophizings, Profound Insights, Random Rambling | Tags: afterlife, anxiety, bear, cancer, chemo, ct scan, cyst, death, flying monkeys, pufferfish, tumor, uterine cancer | Leave a comment
It started out like a good idea. I wanted to post a positive, inspirational quote in the FB group of quotes I started. So I googled. I’ve been struggling with the idea that this cancer came back to teach me a lesson – and what that lesson could be, so I thought, hey, why not a quote about dealing with the lessons taught by difficulties. Had I known that I would have to sift through a bazillion quotes about how I should turn to god in all this, I would have just written my own. As I’ve said before, I am all about people believing in whatever gives them comfort in their heart. Yet, I still get frustrated as hell by the idea that for me to get well, I have to have faith in a god. I don’t. That doesn’t mean I don’t want people to pray for me if that’s what they believe in, because positive energy is good energy in whatever form it takes, but please don’t tell me to put my trust in something I don’t believe in.
That said, the other day when I was thinking about dying, which I do a lot these days, since it’s not something that I can just put aside, I thought for a minute that I would get to see my beloved friend Joey again when I am dead. Then I though, oh shit, I will also have to see my mom. That’s not gonna go well. Ick, and a bunch of ex-boyfriends. Then I remember that we are all energy and no one is really gone anyway, their just a different type of energy, so the “dead” are always with us, just not as we remember them. Then the snowball started – all death related questions, so I thought I’d share a few for you to waste a few hours pondering:
Catholics are taught you are going to purgatory when you die, then you have to atone for all of your sins until you get to go to heaven or hell on judgment day. Also, the unbaptized and sinless get to go to limbo to hang out until judgment day too. So, if that is true, why do we pretend that when someone dies, we have an angel watching over us? Isn’t that like a lie? And where in the bible does it say that you get turned into an angel anyway? I thought the bible was pretty clear that angels are angels and humans are humans and never shall the two interbreed, or HELL. Not that I am worried about this for my own self, but I just wonder about it.
Another catholic concern: If on judgment day you get restored to your perfect human body, if you are going to heaven, which human body is it? Because I would like the one I had at 19. I was really happy with that one. I don’t want this year’s version. And, if you get the body you want at a certain age, and you are trying to reconnect with someone in the afterlife who never knew you at that age, how will they know you, and what if they choose an age when you didn’t know them, then how will you ever find each other and what if one of you is 19 and the other person’s perfect body was at 72, would you still be friends? Think about that. And if you get to pick the age of the body in the afterlife, why even bury dead bodies, because pretty likely you don’t want the one you died in. Unless you were 19. And if you are going to hell, wouldn’t you just get to keep the crappiest form of your body there was?
And why don’t we put wooden crosses at hospitals everywhere the same way we put wooden crosses at crash sites? I mean people die there every day. And at home. I just don’t get it.
Now that I’ve got you thinking, I’ll move on.
I’m doing okay. It’s almost 3 weeks of the tamoxifen. It’s not bad, except for the pimples, nausea, and hot flashes. And now, weight gain, or at least bloating. As if I didn’t have enough weight already. I am trying to figure out if I am dealing with the diagnosis okay or if I am depressed. I’m having pain again, which I manage the best I can depending if I am at home or at work. I am trying to stay off the opiates as long as I can. I feel like I am in limbo now until August, and wish I had a personal CT scanner so I could follow the progress of the ol’ pufferfish myself. I know it’s gotten bigger, because I can feel the changes in my body, and how it impacts my stomach and intestines. I just want the other stuff to disappear, and I wonder if it keeps growing, will they be able to drain fluid from it like before, or am I just going to have to suffer from it? I don’t like suffering. I don’t do well, even though I have a particularly high tolerance for pain. So I just need to know what’s next.
I am not sad. I’m just lacking motivation. There’s a lot of things that go through your head when you have a very uncertain future. A few weeks ago, I was reading an article about being less materialistic. It said before you buy something that you want, ask yourself will anyone want that when you are dead. Amazingly, it really limits the amount of useless shit you buy. Like before I buy another ball of yarn, I say what is Andy going to have to do with the unused crates of yarn you already have, for all the projects you were going to make and haven’t? Then I don’t buy it. It’s morbid and useful all at the same time. So if there’s something of mine you want, better call dibs now, because who knows what will become of it later.
It’s not that I don’t think there’s hope. Because I do. I just have lived my life with preparing for the worst and being pleasantly surprised when the worst doesn’t happen. And if it does, then I was prepared for it I just don’t want to be a fucking Pollyanna thinking that nothing bad will happen, because ignorance is not bliss. I still envision this annoying beast inside of me shrinking and disappearing, I drink the tumor tea, and chant healing sounds. I just don’t want to think that I can go on living like I have all the time in the world. I don’t and none of us do.
I went back and forth on the idea of a bucket list. I don’t like that cliché, but I made a list anyway – it’s pretty short, because I realized I did a lot of the things I wanted to, and the rest, well, either they don’t really matter in the grand scheme of things, or I put them on the list. Mostly, I just want to spend time with people laughing, (which is why I spent the entire weekend alone in the house, medicating) and just hanging out. There are really only three significant things, in addition to my 1000 books read plan, flying in a fighter jet, and do a couple barrel rolls, and maybe a loop, go to Ireland (with a side trip to Stonehenge) and get a van and drive cross country, hitting up all my friends in different states as I make my way back to the west coast. Oh and get a passport. I still haven’t actually gotten around to that. I do have other plans as well, but they aren’t “bucket list” per se, just stuff I am not going to put off doing any longer.
Anyway, this was kind of random. Maybe because I had a lot of pain this morning and I treated it. I also thought it was Father’s Day today, and called my dad to wish him greetings, only to have him inform me it was next week. Andy and I are going to see Against Me! next Saturday in Lancaster, and hopefully my shark sister and her husband will join us, and we can finally get Himalayan food before the show. As for now, I suppose I need to go through my washed clothes in the dryer so I have work clothes for this next full week of work ahead of me. For the record, last week I worked on two case dictations – 41 pages of typing and over 50,000 words total. And only 7ish cases left to go. So be well my friends, enjoy your Sunday, and hope that the next time I blog, I make sense. Be well.
Oh, and you should read this article on impermanence. Here ya go…
14 June 15 | Categories: c-monster, Philosophizings, Profound Insights, Random Rambling | Tags: afterlife, anxiety, bear, cancer, carnivorous kangaroo, chemo, chemotherapy, ct scan, cyst, death, depression, diagnosis, disease, doctors, endometrial cancer, fear, flying monkeys, malignancy, pain, peace, positive, sadness, sick | Leave a comment
Well, well, well.
I noticed from the upswing in hits on the blog that people have been anxiously awaiting this blog entry. It’s certainly not one I wanted to write, and it took a few days for me to get my head around the news from the Dr. and actually sit down and write. Mostly I have just been lying in bed, super-high on narcotics and whatever else is lying around, trying to pretend that none of this is happening. Do you think just once, my body and mind could cooperate? Just once, for a few blissful hours of mind and body numbing peace. No fucking way.
First, I couldn’t get numb enough. And believe me I tried. But then things kicked in and I was all sorta fuzzy warm and mellow and just kinda caught in that sweet spot between sleep and awake where you can just lie there and not care. Until the pain started. Then I had to revisit my dear narcotic friends, and a few Advil just for good measure. Next thing you knew, I was asleep. Well, for two hours anyway, because my increasingly smaller bladder had me up stumbling to the bathroom every two hours, as in the new normal in this house. And of course, I need to drink a lot of water, so that fun never stops. But here we are, Sunday morning, almost noon, and I am enjoying the bitter turmeric tea and encouraging it to kill cancer cells as I type.
I suppose I should reveal the news from the Dr. I have already had to text or tell a bunch of people, and first let me say, the words I hate to hear are “I’m sorry” – I know you are, you don’t have to say it. I also hate the sad look. So, if you can spare me any of that, it would be awesome. I am not going anywhere yet, unless the Tamoxifen gives me a heart attack or embolism. I’ll reveal the full prognosis after I set the stage, because even though the moments are etched forever in my brain, they aren’t stuck in yours yet.
So Heidi and I head off to Hershey that morning, bright and chipper. Okay, maybe the chipper part is an exaggeration, since I already viewed the CT scan report online, Friday night, after it was posted. I already knew one of the tumors had shrunken significantly, and that my bladder lining had thickened. I also knew that that fucking pufferfish was living, larger than ever, in the dark vastness of my uterine cavity. Inside of it was no longer a clear or murky liquid, but evil nodules of the deadliest kind (which they might not be, but in my mind, I’d already given the diagnosis). These were new and growing nodules. Evil bits that plague the pufferfish. However, despite the new larger size of the pufferfish, it was not causing me any real pain, that is to say, there was some achiness that I had attributed to just being lazy, but that I now knew to be pressure from the beast. It was not the relentless traumatic pain that I had before that warranted morphine just in order to function. In fact, I could get away most days without any medication at all.
Despite the two young deer that decided that crossing Interstate 81 was a good choice at 9:15 am, we arrived early at the appointment – and of course the waiting room was crowded, but not as crowded as it had been in the past. Of course, I was anxious, but I had kept deluding myself with the thoughts that Dr. K would just tell me it was nothing, put me on hormones, and send me on my way for three months. I was busy checking my facebook between talking to Heidi, or playing Red Herring and thinking “why didn’t I make that neato sign that says “I’m in remission”?” so I could take a selfie later. Then I was called. Well first they called for Diana, and ended up with the wrong person, then they realized their error and came back for me. And it was actually early for my appointment. Omen 1.
Well I went back alone, and was weighed and measured. When I looked at the scale, it looked like I gained three pounds, which was annoying, but turns out, I lost five. It’s hard to read upside down. I went in to the exam room with my nurse, and we did the blood pressure thing and reviewed my meds, and I gave a two for my pain level, and then this unfamiliar nurse left me and told me Dr. K would be in soon. And I waited. And waited. And waited. I heard and saw medical students wandering about, so I knew it was a minion day. This might take a bit.
And I waited. After 45 minutes, there was knock on the door. In came a young woman, who let me know she was a chief resident. She had a copy of my CT report, and asked me the usual minion questions. I told her I had already reviewed my report on line, and compared it to previous reports and she asked me what I thought. I told her I was pleased that one tumor had shrunk, but I was concerned about the other information. She smiled and said the tumor shrinking is good news, right? I agreed, and then she excused herself and told me they would be right back in a few minutes.
And I waited. By this time, I have concluded that this visit is going to have bad news. I never wait this long to see the Dr. It’s almost an hour. Dr. K has a southern drawl. I hear him going in and out of exam rooms, but never mine. My treatment coordinator, Anne, has not arrived to hug me. Something’s up. It’s not the usual laugh riot that my trip to the Dr. usually is. Even though I consciously want to explain away the delay, I know that the last time I had to wait this long, it was not good news at all. Nope. My gut knows this is bad. Omen 2.
Still waiting. The chief minion pokes her head in and says it will be just a few more minutes, smiles and exits. I hear Dr. K in the room next to me talking to the posse. I can’t hear what he is saying, but I am texting Heidi to tell her this is not good and I am still waiting. Then I hear him in the hall, telling someone to go find Anne and tell her he needs her. Then he says, tell her I’m in here, I am going in. And in comes Dr. K, at 11:45ish, with his somber face on. I notice this and say “hey, you have your somber face on,” and he sits down. It is never good when he sits down right away. Omen 3.
He whips out that CT report and begins. He says, well you already saw this, but I’m going over it. I say of course, I saw it, but my medical degree from google and web md are not helping me understand it. He says well the one tumor outside is significantly smaller. I nod. Then he says, but your cyst is back, and bigger, and again I nod. He says that this is not good. The chemo did nothing to the murky death cells in the cyst. They even grew. This is not good at all. We do not want murky death cell growth. He tells me that recurrent endometrial cancer is very bad, and I remind him I have used google and know this. He says that the only thing we can do now is try to stop the cyst from growing and/or keeping cancer from spreading. I nod, I’m on board for this. He sighs.
Anne arrived and she has a serious face on too. The chief minion in the chair aside me is silent. Dr. K says we can try another series of chemo, he can put me on a chemo pill, or we can do nothing. Ruling out “do nothing” as an option, I ask him what he thinks I should do, since he is the professional. and has a degree in medicine from a school and not web md, and he says that I have had a rough round of chemo and I should take the pill for three months, and enjoy my summer. Then he throws out “I am not going to bullshit you, if this things grows or spreads, this cancer is going to kill you.” Bottom line. He can’t give me a time frame or an idea of progression, but I know Dr. K long enough now that he wouldn’t be telling me this if it wasn’t a likely outcome. He then reminds me that I am not a candidate for surgery because of where and how this thing is situated and that even if I was, that again, he would have to remove my bladder, rectum, and as a new added bonus, my vagina. No, that is not anything we’d be considering anyway. Quality of life over quantity. I have done an amazing job keeping it together through all this, even making a few jokes. I ask for more oxycodone, while everyone scurries for my prescriptions and to write orders for CT scans in three months. Dr. K reminds me that I WILL be able to go see OWTH in September if they play in Philly. The grandchildren thing is still not something he can guarantee me, and frankly, it’s probably not likely.
Then he hugs me. I want to break down sobbing but I assure him I’ll be ok. Anne hugs me. I am in a state of shock, I think, and then I cry a little. I don’t want to go to check-out sobbing, because I will scare the other patients. I am choking it back. I am saying all the things that other people will say to me over the next few days in my head, there’s always miracles, get a second opinion, be positive – you know, all the shit that people say when they are trying to make you feel better. I let Heidi know I’m out and then I go to check out and stuff my bag with tissues, because the breakdown is coming.
I successfully hold it together until I get to Heidi’s car. Then I tell her my prognosis, and cry a little. Then we go to lunch. At Houlihan’s. I have two hard cherry lemonades. I am relaxed. I can deal with this, but I am devastated that I will have to tell Andy. I don’t want to ruin his future plans and make him feel like he has to put his life on hold while I wait for cancer to finish me off. I don’t want him to have to be without his mom. I don’t want to have to tell him.
For the record, I have told brother’s Michael and Alan that I am on Tamoxifen for three months, and that we will see what happens when we have CT scans in August. I didn’t tell them the endometrial cancer will likely kill me part. I am sure someone I have told or that reads this blog will spill the beans, but I couldn’t. I am also not telling my dad or my other brothers. I am sure again, that someone will tell them even though I DO NOT want them to know. I couldn’t not blog about it, because frankly I am tired of telling people and facing the sad face and hearing words that do nothing to make either of us feel better.
So for right now, I am in limbo. Knowing the history of this pufferfish and its habits, it’s more likely to keep growing than not. I am taking Tamoxifen twice a day, and hoping it helps. I am drinking turmeric tea and trying to eat better. I am chanting for healing. I am visualizing the pufferfish drying up and vanishing, but I also know better than to dismiss the likely reality. As I’ve pointed out to many of my friends, there are advantages. I’ll be able to get a prescription for medical marijuana when the law passes here in PA, and I will probably never have to pay back my student loans. One of the possible side effects of the Tamoxifen is that I may lose weight (I could also gain it, or die of an embolism, heart attack or stroke). So who knows?
Strangely enough, I am also okay with this. Knowing beats waiting for the other shoe to drop. And I can finally go get that new tattoo and get my ears pierced so I can get big gold hoops that say “sexy” and “baby” to rock with my bald ostrich head. And I only need to get through 2.5 months before my next CT scan before I know if the tamoxifen had any effect. Oh, and I get to return to work full-time on June 8th. Woo hoo. I probably could have had my Dr. write me off for the whole summer if I asked, but hell, I am tired of not getting a paycheck and having to rely on Andy for money. So we’ll see how this all works out.
That my friends, it the story. Now I’m off to make some lunch, or take a nap, or something. Enjoy your Sunday afternoon. Peace out.
PS. I have this goal of reading 1000 books before I die. I am on number 2. However, it’s heavy on feminist theory, so it could be a while. But you should be happy because it’s about feminism and you know how I love that. Just wait.
BTW, if you like this or any of my entries, hit the ol’ like button on this page. Maybe more people will read it then. And it gives me a happy star when someone likes my entry. It’s the little things, folks.
31 May 15 | Categories: c-monster, Philosophizings, Profound Insights, Random Rambling | Tags: amusement, bears, cancer, challenge, chemo, chemotherapy, ct scan, death, disease, doctors, dying, endometrial cancer, flying monkeys, life, malignancy, pufferfish, sick, side effects, tamoxifen, treatment, tumor, uterine cancer | Leave a comment
I’ve got my crankypants on today. I am on the verge of a breakdown, which I am eagerly anticipating since once I have it, I can get back to the business of being me. I almost typed normal, which I have never been, or will be. Even commercials are annoying on TV – especially the flonase one, in which I am told repeatedly that six is greater than one. Thank you very fucking much flonase. I know that the American education system is flawed in a lot of ways, but I am pretty sure anyone who ever attended school learned that six is greater than one. In fact, my guess is that unless a person was raised by wolves, EVERYONE knows that six is greater than one. I don’t need big pharma trying to sell their product to me with a condescending commercial. So fuck off Flonase.
And Snapple commercials – also fucking stupid. And any feminine hygiene commercials, except for those great commercials from a few years ago, where the woman mocked dancing and riding horses when a woman has her period. If you want to sell me you shit, appeal to my intellect, or make it direct, but don’t try to trick me. Again, I suppose it’s because I don’t consider myself a sheeple, that I think most of what I see or read is skewed and manipulated and trying to make me a mindless consumer. With this is mind, I have taken a new approach to shopping, from an article I recently read about living a more simple life, and death – when I am going to buy something, I am now going to ask myself, will anyone want this when I am dead? Because if not, I don’t need it, because people will only throw it out when I die.
These are the things keeping me awake besides the decadron tonight. And since I cannot escape the omnipresent thoughts about this fucking vicious monster inside me, you, my friends, will also be subjected to it until it either a: it goes into remission, or better yet, vanishes or b: I have a breakdown and stop stressing over it or c: I die. Yes, I said it – die. Because we all do, and since I see more and more people my age doing it, and because of a conversation I had with my old friend Anne, in which we realized that most of the people we hung around with / dated in high school are, well, dead, it’s been on my mind. And the tragic mess that is my house is also a reminder that should I die tomorrow, from this disease, some other medical issue, or from walking under a falling piano that Wylie Coyote was planning to drop on the Roadrunner, it could happen. There are journals to be shredded and/or burned, wills to be amended, and just other odd bits to be destroyed/discarded. I am not worried about what I put on Facebook or in this blog, because whatever I put on a computer will live forever. I used to think about that when I wrote in my journals, but there are some very dark times in years past, that are better left unread. Nothing that would enrich or improve anyone’s life. Of course, there’s a burn ban in effect in Schuylkill County for the next month, so it’s not like I can burn them right now anyway…but if you read this, and if I should die before the end of May, there’s one journal in my bedroom, and I think two are in the giant steamer chest in the living room with all of my photo albums and a copy of Madonna’s Sex book which I put in there because it would be too much trouble for Andy to move all the stuff on top of it to get in there and find it. Somebody get in there and destroy that shit ASAP once I am cold.
And while we are being candid here, I am gonna put this shit out there too, again because I am cranky and I am gonna be up for a few hours because the sucky decadron make me superhuman and amps up my anxiety x100 the night before what we are hoping is the last chemo for the next 20 or 30 years. When you have the stupid c-monster, or any other chronic disease, people will ask you how you are feeling? I really want to tell people how I feel, but most times you just say, fine, or tired, or great, and slap that stupid smile on your face, to make other people feel more comfortable. After the next two or three weeks, that might be true, but this deep into chemo, the answer I bite back is this: I feel like shit. I could sleep 24 hours a day, every day, except when it’s warm and sunny, and I want to go out somewhere but don’t feel up to driving myself. So I sit on the porch. I feel nauseous most of time (this is new, I have to eat every few hours or address the need to hurl with other treatments) and nothing that I eat or want to eat really tasted good. I have this weird smell in my nose that won’t go away. While my eyebrows have not completely fallen out, most of my eyelashes have and I wake up with my eyes crusted shut every morning and my greatest fear is that I will lose my excellent health care insurance because I will get too sick to go back to work and I will be reduced to substandard health care, or worse yet, medical assistance, and will not be able to afford getting well. I have weird pain, I forget shit all the time because of my chemo brain. And I am afraid every time I go to the doctor that I will get bad news and have to continue with my treatments indefinitely. That’s how I am feeling – how are you? But you don’t get to say that. (sorry I know I’ve said this all before, I apologize for the redundancy. No, not really, this is my fucking blog and since the only people here in the house to talk to at this time at night have their eyes permanently sewn open and their mouths sewn shut, there’s a lack on interactive conversation.) Random thought: Does Chris Isaak even write music anymore? You never hear about him anymore. That’s what I need, I playlist with Chris Isaak, Morrissey and Elliott Smith, with a dash of Jesus and Mary Chain circa Darklands tossed in there and I would never leave my bed again.
Yes, it’s true I am feeling sorry for myself. I am scared to death of what’s to come in the next month. I am scared that I will need to have more chemo. I am scared that the scans will show something I don’t want to know. I am not a fan of this nonsense at all. I’d prefer to lie in bed sleeping all day because I am just a lazy cow instead of it not being my choice to do nothing. I would prefer to go through life not thinking at all about whether or not I am going to have to have treatment again. It’s so not fair. I long for the days when staying my jammies all day was a decision, and not because I am too weak to get dressed. I want to enjoy a shower, not dread the exhaustion that follows. I want to look forward to cooking, not just pray I can find something that tastes good and requires minimal exertion on my part. I want to enjoy drinking water, and not fear it will taste like poison when I drink it. I want to walk up a flight of steps without gasping for air like a fucking trout out of water. I want eyelashes dammit!
It’s now 2am. We are leaving at 7:30 tomorrow because my doctor’s appointment is an hour earlier. Of course it would be on the day that Andy is going to be my chemo pal. Hopefully the Dr. will be on schedule, and we’ll be in and out of there, and Andy can go sleep for a few hours at Tom’ house while I get my treatment, so he’s not up all day and then has to go to work with no sleep. What does that mean? It means if you feel like visiting me while I am pumped full of poison, I will be in the second floor infusion room, hopefully one with windows, and a decent automated bed (not like the bed that required manual adjustments the last time I was there) after 11 am, because before that, we will be getting Asian rice crackers, Starbucks and some more oxycodone, to make chemo more fun. It’s only 3 more hours until decadron dose number 2. Good times.
I was going to try to end this with something positive, but I feel that would be fake, so I am just going to start packing my backpack for tomorrow. I’ve found that since I don’t need to bring a blanket to the infusion center, I can actually get the laptop, my stuffed friends, and snack all in one backpack so I don’t look like a dying homeless person when I go to the hospital. I suppose that’s positive. And I can throw my sheets and blankets into the washer and actually dry them before I go so I can have a clean fresh bed when I get home, so that’s positive. And I already have ginger beer, honey and pineapple juice to get through the next few days. That’s plenty positive.
I think I might actually blog from the hospital tomorrow to document the day’s events. That could be fun. Now I am off to fold another load of laundry and eat a yogurt. Then try again for sleep. So curl up with your favorite toy, my puppies, and sleep tight. And think about all the people who have bed bugs, and be eternally grateful you don’t. Bon soir.
Addendum: There should be an assessment period before people are allowed to be on Facebook. Like they should have to have a myspace and it should be monitored for stupid and annoying things that are misspelled, bigoted, or obviously scams or urban myths. If a person posts that shit, they should never be allowed to move up to facebook. I am tired of being the internet police, sheesh.
Also, why when you google anything about cancer, everything is pink and has to do with titties? I mean I get that breast cancer is a huge issue for women, being that I am one of them, but what about all the other killer cancers out there, why does it seem we only care about cancer that affects the one part of women that, aside from the vagina, are something of interest to men? That pisses me off.
22 April 15 | Categories: c-monster, Philosophizings, Picture Perfect, Profound Insights, Random Rambling | Tags: annoyances, anxiety, bald, blackness, c-monster, cancer, chemo, cyst, death, depression, doctors, dying, endometrial cancer, facebook, flying monkeys, friends, laugh, sleep, uterine cancer | Leave a comment
I stayed home again today – this means there isn’t going to be a paycheck next Friday. Good thing chemo is Wednesday, since I won’t need food or have much of a life for a week or two after that. Yes, you read that right ladies and gentlemen, chemo is next Wednesday is chemo, which may very well be my last chemo, we can only hope. I’m so done with all of this – waking up to eyes crusted closed because I have no eyelashes to protect them, the dry scratchy skin on my face and legs, the weird wispy white hairs that grow in the interim while I wait for my hair to grow back, being fucking exhausted 24-7, the weird smells in my nose and the fucking metal taste that hardly ever goes away.
But let’s review where we are at before I continue. My CA 125 number is still in the normal range, which is good, but it didn’t go down for two treatments and it went up this week, so I’m a little anxious. My blood tests are good, but my counts are understandably down, especially my hemoglobin and my white blood cells, which means I am ultra-susceptible to infection, in addition to being exhausted. I’ve been watching my temperature all day, because I started running a low-grade fever last night, I have an earache, and I can’t stop sneezing. What did the doctor say during our last visit you ask? Well, he thinks that the chemo will have done its job, and I will start hormone therapy after this last treatment as long as my scans look good. Ideally, the tumors will have disappeared, or at least shrunk significantly. It will still be contained to the area where it started and left the rest of my body alone. We did talk about the surgery option, and that’s never gonna happen. He said I’m not a good candidate, and he said it wouldn’t be a positive experience for me even if I was a candidate, so what does this mean? The tumors stay, no matter what their size. His goal for me and my treatment is give me a good quality of life. He did say I am not dying at this time – I will still make it to the OWTH show in Philly in September, and he will let me know if the prognosis changes and I am dying. He definitely said he would let me know if I was dying. So no dying. As for my plan to have grand-babies if that is what Andy and his life partner decide to do, Dr. K said there were too many variables for him to guarantee that could happen, but I definitely will make it to OWTH in September. That means I will also probably make Halloween and Thanksgiving, and Christmas this year. More than likely, I will be around longer than that too. It doesn’t sound like my demise is imminent at this time. These are all good things.
So tell me then, why am I so unhappy? When does this new lease on life shit come around? It didn’t happen last time, it’s not happening this time, and it’s very disheartening. I know a lot of this has to do with my exhaustion and my inability to do a lot right now, but I also know that if these tumors are not gone, or drastically diminished, I’m a time-bomb. According to my Dr., my cancer is atypical of endometrial cancer. It should not have come back, but it did. It should not be responding to chemo, and it is. It’s not doing anything that endometrial cancer should do. It’s quite possible that the cyst was always cancerous, but it never showed any signs of malignancy until this last surgery, which is bizarre. It’s my own special type of endometrial cancer. How fucking lucky am I?
I didn’t want to write anymore about cancer. It’s just not as funny this time. It’s old and annoying. I am much more than this disease, but right now it’s the only thing that I can think about. At this point, I have so little energy, I am excited that I can make something to eat in the microwave. I made baked hot dogs for dinner the other night and needed a nap afterward. I need a nap after I take a shower. I can get in the car and go places, but it is work to get out of the car and go in the house. If I can’t drive through it or get it all in one store, it doesn’t get bought. Sitting up for extended periods is tiring. I don’t want to sleep all day, and that seems to be all I can do. Thank goodness for the DVR, because I fall asleep during nearly every show I try to watch. I am surprised I didn’t fall asleep eating or driving yet. This disease is a monster. After my last chemo, I had these weird pains all over my body like a whack-a-mole of pain – there’s a spot on my foot that still hurts, and actually feels like I broke two toes, but when I actually touch them, there’s nothing wrong. I’ll fall asleep and then suddenly, bam, a fiery pain rocket fires in my leg, and I’m awake. Then the restless foot thing happens and I’m whining for an hour trying to get back to sleep. My medication helps, but sometimes I would like to just have a clear head for a few hours. I keep telling myself over and over…just one more. There’s just one more treatment – please let there only be one more treatment.
Opiates make for weird dreams throughout all of this. Most of them are weird in a good way – like I want to go to back to sleep to resume them. There are also weird dreams when I am not taking them, probably because my brain is bouncing back from being in the poppy cloud. Last night I had a really sad dream though and it’s been hanging around all day, as if now even my sleep is conspiring against me to keep me from waking up with a smile on my face. Meditation, chanting, sunlight – I am really trying to keep the black cloud away, but it’s not working out as I planned. Don’t get me wrong – I am still really okay with the whole death and dying thing – I still feel like life is trying to cheat me – but whatever is going to happen, is going to happen. I mean, I could step outside and step on a Shenandoah splinter, and get hep c. I could be hit by an unattended, unoccupied, runaway vehicle that rolls away from near the One Stop. I could choke on a grape. I’m OK with that – what I am not okay with this uncertainty, and the fear. I’m not fearless. I might act it most of the time, but in my bed – I am scared little girl, who is afraid of what might come – not the death part, but the being sick part. I don’t want to be any sicker than I have been. Again, my future is now going to be controlled by my access to health care.
There is plenty to be grateful for though. We now have a dryer again, thanks to Crystal, so I can at least watch and dry clothes now, even if I don’t have energy to take them upstairs. Andy cleaned the kitchen, sort of – now if I can get him to take the recycling to the recycling center. The rest of the house is a shambles. It’s spring. Things are turning greener. Kellie hung out with me at my last chemo and let me beat her at scrabble. I went out to visit Paige and Preston and Kenny. I had some pudding. It was good. It’s not all gloom and doom, but I need to vent what I feel here, because in the tower, there’s no one but me to talk to. It’s not easy being positive when you don’t know what’s next – I do what I can. Mostly I am happy and laughing, because what else is there to do, but alone, I am reminded that life has not handed me an easy go of this. It’s not fair and it sucks, and it’s so easy to be on the outside looking in and think that there is an end in sight – there is, but like the rest of life, it’s all fucking gray – not black or white, or anything I can hang my hopes on. Sure, the glass is half full, but in my world, someone will come along and poison it, just to keep me on my toes.
Sounds like the dryer stopped, so I should go throw the blankets in, so I can have fresh clean blankets to wrap around my walrus body once I take my medication and drift into a medicated slumber. I want to get past this disease that has overtaken my life, and focus on politics, feminism, and social injustice. ( I know you can’t even wait for that). Plus my eyes are getting weepy and tired, and want me to rub them non-stop until they are sore and red.
So that’s it for now my friends…I’m just gonna quietly post this, because this one was all for me, just to help me process my frustration. As with everything this will pass. Be well.
17 April 15 | Categories: Uncategorized | Tags: anxiety, blackness, cancer, carnivorous kangaroo, chemo, chemotherapy, ct scan, death, depression, disease, endometrial cancer, flying monkeys, sick | 2 Comments
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