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Posts tagged “anxiety

And Now We Have Deatheaters

WARNING: Straight up, this is going to be graphic, probably long and definitely rambly. You might want to get a drink or snack now. Unless you are one of those weak stomach people, then don’t get the snack ’til later. I’m not going to give the warning again, so it would behoove you to skip this one if you don’t like to know all the details of what’s shaking with the pufferfish and the havoc it plays on my female anatomy. Additionally, there may or may not be morbid comments made about my demise, which I found particularly funny, and thus wanted to share. There may be political ranting and more unsolicited opinions which I will impose upon my readers. YOU HAVE BEEN WARNED AND CAN CLICK THE X NOW if you want to wait for an entry about ponies or fairy princesses.

But first I must offer a more detailed explanation for prolonged absence from the blogiverse (or rationalize my lack of motivation). See, right now I am sleeping on the couch, or rather I am occupying the couch 24/7. The reason for this is that the pufferfish requires that I sleep no more than two hours at a clip. There’s no way around it – I could not drink a thing for 12 hours and I would still need to get up and hit the bathroom. So because I get no extended sleep, I’m kinda tired. Really. So I take lots of naps. Sleeping on the couch forces me to get exercise by going up and down the steps at least twelve times a day, usually more. I need as much forced exercise as I can get. My new sleep habits and constant tiredness are also not conducive to doing things that require extended focus. So no matter how much I want to write, the whole getting the laptop and opening a file and all that seems like a ridiculous amount of work. Making a fucking hot pocket is a lot of work these days. Andy also got me a iPad for Christmas, so it much more convenient to dilly dally with that in the short wakeful periods than to get the lap top. Problem is that Apache’s Open Office, which is what I use for word processing, has no app for the iPad and I can’t write on the iPad I can do multiple virtual jigsaw puzzles, however, as well as use virtual coloring books. But I can’t write, and since I am leaving these files for Andy to publish if he wants after I am departed. I have to leave him some sort of legacy, because we all know my biggest financial accomplishment is the fact that I will be sticking the US Government with the balance of my student loans when time comes for me to go on disability or drop over. While my vast possession include a cache of craft supplies in case there’s a craftpocalypse, and multiple curious items and rocks, their value is more of a personal nature than monetary. It is at this juncture I will share the delightful conversation my beloved child and I had regarding the future the other morning when he came home from work:

Andy: What’s that?

Me: A record I got from Anxious and Angry and my new flexi.

Andy: You only got one?

Me: It’s not like you don’t get all this stuff when I am dead.

Andy: Speaking of that, suppose you prolong this and you don’t die for say, a long while, which is what I hope for, but, do I have to wait that long to get your vinyl collection?

Me: You can always borrow them, as long as you take care of them, if that’s the case. I’ve always let you borrow records.

Andy: Yeah, I know, but it’s still your stuff, I was just wondering when your stuff is my stuff. Not that I’m in any hurry or anything.

Me: Laughter

I am very glad we can have these refreshing conversations. But back to my excuses for the delays – sorry, I just didn’t have what it took to make the effort. I am feeling better today for the first time in a while. I spent an hour floating in an isolation tank at Art of Floating yesterday. There’s a 1000 pounds of Epsom salts dissolved in the water in the tank, and you just float in silent darkness. It’s like you are on a warm cloud. Very, very relaxing and it’s supposed to be very good for detoxifying your body, because of reverse osmosis where the salts in the water extract the toxins through your skin. Whatever, I just know I was jelly when I was driving home but by the time we got here, I was really sickish, which pissed me off a bit because I wanted to go to work today and I was afraid I would be sick again. But when I woke up today I felt pretty good – albeit tired as usual with the spewing in full swing, but no wretching and gagging. I made it to work, and even went grocery shopping. I am going to try to do the floating once every other week, so hopefully it will make me feel healthier. And while that was a real convoluted way to get to the fact that up until today, I didn’t feel like making the effort to write, and couple that with post holiday seasonal depression, if I lived in a rain forest, there would be moss growing on me. But here I am, full of snark and what not, ready to tell you all about the deatheaters and update you on the current state of my health with full graphically gross details (there would be pictures, but I don’t take my phone in the bathroom because I am afraid it will fall in the toilet). Aren’t you fabulously lucky?

Please also be advised that the new season of Vikings starts tomorrow. I will be unavailable on Thursday nights.

Now, back to this month’s doctors appointment, and it’s prequel, the CT scan. Back in January, I buzzed on down to Hershey for my scan. Now, since I was attacked and brutally tortured with tubes and catheters, when I go in for a scan, we now have to talk about my kidneys before I get the scan due to the contrast die they use. The technician decides to check my blood before giving me the dye, in case they have to decrease it. It only takes her a few minutes to come back and say there’s concerns with kidney function and they will just give me a low dose. This immediate turns on the freak out switch in my brain, because Dr. K constantly reminds me that if my kidneys aren’t 100%, he’s making me go back to urology. I will fight this tooth and nail because those two horrid months of the tubal torture when I had that stupid nephrostemy and catheter made me realize that I am not even considering that being part of my end of life scenario. I’ll get eaten by a shark first. Anyway, panic has set in. So I headed home so I could obsess about how long it would take for them to post the scan results so I could then also obsess about said results until I see the Dr. six days later. It took almost until like 1am to get them posted. And they were perplexing. Pufferfish was smaller, which was not surprising as it was constantly spewing nastiness, but as for tumors on my lungs, the one on the left disappeared, while the one on the right grew .5 cm. Which leads me to believe that these were not really tumors to begin with, but flies on the screen or spilled coffee. The scan says that the pufferfish is showing signs of necrosis and that there is no signs of the cancer spreading. I am familiar with the idea of necrosis as I have a weird interest in flesh eating bacteria as well as having watched an episode of House where House used maggots to eat away dead flesh on a patient. I am not sure that this is a good thing, but the more I read about it in tumors, the more it seemed like a good thing.

My research explained that necrosis in a tumor means the tumor has lost it’s blood supply and is now dying. This is good. The body has two processes for getting rid of dead cells and tissues – the normal one dissolves the dead stuff and it processes it through the blood and liver. And all is good. You can look the name of the process up, I can’t recall it right now. The process in necrosis is a tad different because it’s not a normal cell death, so the body turns the cells in to a blackish bloody pus that is the bane of my vagina right now. I should own stock in feminine hygiene products. What google’s sources of necrotic info didn’t tell me is that sometimes the cells and tissues don’t dissolve – they are just ejected. Cue arrival of the deatheaters. Slipsliding their way through whatever hole is or isn’t there in pufferfish, they slink their way out of my vagina like ghostly black boogers, or sometimes like larva or weird vein like creatures, or even more unnerving, things that look like curdled coke that sometimes happened when you made an ice cream soda. Understandably, the first few big ones make me a little nervous, but it’s not like I was in a lot of pain or anything.

I was feeling kinda positive when I headed to the Dr. on Monday, with my new found knowledge. My blood pressure was perfect, I wasn’t nodding off in the exam room, my appointment was only 45 minutes late, and the waiting room was actually not packed like a tin of whiny sardines. And I was early so I wasn’t even rushing. This semester’s minion came in and I told her about the deatheaters and all the other flotsam and jetsam being flushed out of pufferfish and she took appropriate notes. Then she went off to fetch Dr. K. He came in with my scan results and said “well, your cystic mass is smaller (yes, read the same report) and that we’ll just have to wait and see what happens. He assured me that things falling out of my vagina are okay. Unless it’s like an organ or something. As my cancer has been the exception rather than the rule, he can’t tell me what the pufferfish is going to do – in the best case scenario, it will be devoured by the deatheaters, and it will be purged from my body, and then we will focus on the lung tumors. It could also stop dying, or it could affect the surrounding organs. But it’s a good sign that I am a non-stop fountain of pus. So as Dr. K put it, we’re no worse, so that’s a plus. I know he’s trying not to give me false hope. I’m okay with that, and with the wait and see approach. In the meantime, I get to continue to take the dreaded chemo pills, particularly the hated Tamoxifen. Dr. K seems to think that this change in the activities of pufferfish is a result of the chemo pills, I choose to believe it was the use of herbal medication, turmeric tea and constant visualization that the pufferfish was turning into the black-hole of my pelvis and folding into nothingness. Either way, we”ll just keep visualizing it vanishing, and hope it doesn’t get creative. I don’t have to go back to the Dr. until April and then we’ll decide what’s next. In the meantime, every bathroom trip offers the opportunity to first hand examine rotting flesh as it’s spat from my body. Cancer, people talk about you like there’s nothing positive – hell, I am getting a live anatomy lesson daily. To help you get your head around what a deatheater looks like, picture a piece of spinach in a soup, it’s all feathery and floaty, except deatheaters are black and look like dementors from Harry Potter.

Fortunately, none of this is more painful that having cramps before your period. In fact, all of it’s very much like a period, except for my lack of a uterus and ovaries. It’s amazing the multiple shades, sizes, and behaviors of this decomposing flesh. The worst of it is it’s impact on my liver, which is fighting to filter grossness out of my blood and how exhausted that makes me. But as I told Dr. K, if this is the alternative to being stuck with tubes, and being in pain and having brutal pressure, I’ll take this 1000X.

And now, I am tired. My head feels much lighter. I’m even considering taking down the Christmas decorations, at least outside, this weekend. I’m still not much of social animal, my limit is like 2 hours, but visitors are always welcome at the house where Christmas puked. Social interaction is always welcome. I’m gonna go whip up a hot pocket and then snuggle in for a two hour nap. Send good mojo that the pufferfish is in its last days and that it stops when it’s done eating itself, and continues to push out deatheaters Enjoy your evening and remember the days are getting longer and spring is just little over a month away. Soon you will be blessed my annual obsession about spotting the first robin. Yes, yes, I know you can’t wait. Now be off.

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Deep Thoughts (No Pictures)

I am sitting here waiting for my brownie to kick in  – these are some delayed reaction brownies – so I can go to sleep. I can barely get out of bed the last few days, and I just want to sleep sleep sleep, but when I lie down I toss and turn and stress. So I ate a brownie. I ate two the other night, and probably should have only eaten 1/2, because I was all kinds of mushy and floaty. But at least now I know their potency.

Anyway, I just got an email reminding me to update my CV on higheredjobs.com. I almost went to to it, when I realized why do I need to do that? I am not going to be interviewing for new jobs anytime soon. I can barely get my ass into work for 2 hours a day without needing a full day to recover.

The other things that have been on my mind are all time related – can I really expect to go to Ireland in April/May? Or should I get planning to go now? I’m not dying hooked up to tubes in a hospital, so when do I think about quitting my job, cashing in my retirement and starting my drive to the west coast road trip?  What’s going on inside? Am I going to learn tomorrow that I better do what I need to do quickly? I am so fucking scared of having tubes and shit stuck in me and limiting what I can do. And I really started thinking about the dying moments the other day…what’s that going to be like? Will I know what is happening? Will I freak out and plead for more time? I don’t even know if I want anyone there when the time comes…this is what cancer does…it steals your strength, your health, and then fills your mind with what ifs, and lists of what you need to do.

Speaking of which, does anyone have a burn barrel I can come use to get rid of some things? I promise, there are no human remains.

 


Pufferfish’s Christmas Surprise

 

I went through and corrected my grammar and other errors in the light of day…sorry for the mess this was in it’s original state – it was late and I was, well..

It’s really not a surprise anymore, because it was part of yesterday’s blog entry, but it was still a surprise to the Dr. But I get ahead of myself here. Be warned, after I relay the story of my Dr. visit using words like vagina, mucus, and probing, I also get a little raw on what I am feeling. So if today isn’t a good day for you, or you don’t want me to kill your Christmas joy, come back and read this on a raw snowy day in February after listening to too much Morrissey and Elliott Smith and already want to put your head in an oven. (for those of you unfamiliar with that particular method of offing yourself, it requires a gas over with a blown-out pilot light. Not your electric oven. That’s called self-immolation.) Then you can get a real feel for it. But as you’ve been warned in the past, continuing to read this is at your own risk – you were warned. I have to purge the noise inside my head and heart.

So, after the horrible ride home with all the bloodshed, and my long-death-like sleep, Andy woke me up to ask if I called the ER yet – and in true sleepy mother fashion I lashed out like a tiger with a thorn in her paw and told him I’d find my own fucking ride to the ER if I needed to go, and if he needed to be somewhere to just fucking go. I was tired. And I went back to sleep. When I finally felt human again, I crawled from my crypt, er, couch, I called the Careline and relayed my story to the nurse on call for women’s health. At this point, I was back to spotting, and wasn’t really too worried. The nurse however, gave me a stern talking to about how when you start bleeding heavily when you shouldn’t be, you go to the ER. I didn’t even try to argue with her about why I couldn’t go the ER in Indiana or Ohio, because I don’t know what kind of doctors they might have there, and if they even have doctors there, or hospitals. Having had the tragic experience of going to Schuylkill Medical Center once instead of Hershey, I know how bad going to an unfamiliar ER can be. I just took my lecture quietly. Then she told me as long as it wasn’t heavy bleeding, I could wait until the morning to go see Dr. K. BUT if I got dizzy or sick or faint, I needed to go to the ER now. I agreed.

Then I went back to bed. My body refused to tolerate consciousness, and since I left my medication in Chicago, I was not a happy camper, even though there was backup at home. I got up bright and early on Monday, made some tea and then took on the challenge of getting an appointment on a clinic day, knowing I might just get sent to the ER. First three calls I got kicked to a voicemail box that was not the one I selected. So I called the Careline – the person who answered my call did not believe my story about being put into the wrong voicemail box, until she tried it and it happened to her. By this time it’s 9:30. She gets me to the right voice mail box, but as I leave my message I am a little nervous, because what if she doesn’t understand the urgency or she’s off sick. But I’ll wait a bit. By 10:30, I’ve still not heard from anyone, so I call back and get Victor. He puts me on hold to see if he could squeeze me in, and finds out that he can’t until he talks to Anne, my treatment coordinator. At this time, I realize I should have just called her directly, but I’ll wait. Around 1pm, I get a call back to be there for 3:15pm. Now that would seem like plenty of time but I still need a shower and Hershey is an hour away. Still I am out of the house by 2 and on my way. I actually get there early and need a water. The closest place to get water in the hospital is the Starbucks and the line is snaking it’s so long. So I just check in. That’s when the fun starts.

My Dr. used to be in the Women’s Health Building. It was always a mix of women seeing the Dr for an annual exam, the cancer women, and pregnant women, but at least we all were seeing the Dr. for the same general area. Now his office is in the Cancer Institute, which makes sense, but it also means the waiting room is almost always packed with people with all kinds of cancer and people waiting for lab work. Even at 3, it’s standing room only. Dr. K is a great doctor, he doesn’t rush, he talks to you like a person, and he actually cares. He’s also a surgeon. This means he runs late most of the time. Like an hour late. So I am not really all that surprised that I am waiting. It doesn’t really bother me, until the whiners start “what’s taking so long?” “my appointment was at 2, it’s 2:55” and “I don’t care, if he doesn’t see me in 15 minutes, I am leaving and too bad, I just won’t see him.” The last one was my favorite. Why wait? Leave now, make things go faster for the rest of us, and you’re so right, that will show him for making you wait, you have cancer and you clearly have an appointment with an excellent doctor, you’re so right, leaving and not getting examined or treated will show him. I realize that future visits will require headphones. Not only because I have to listen to whining, but because Faux News is the station of choice. The waiting room is clearing out, and I am happy to hear my name called around 4:20. Off we go to get weighed, which is surprising stable in spite of the ravenous hunger the Megase causes.

Once in the exam room, I realize there was a clear absence of minions. I thought they were on winter break. While I am waiting, I hear a discussion about Dr. K’s associate,if you remember, the one that wanted to put me on a psych hold? Apparently, she is not building a fan club because the discussion is about how the patient doesn’t like her at all and will go to a different hospital for treatment because of it and wants all her records transferred. I feel vindicated in my refusal to be seen by her again. The nurse takes my blood pressure – it’s off the charts, because I had to endure that stupid blood pressure machine. I tell her to come back again in 15 minutes and it will be normal. After the nurse leaves, I hear a knock and in comes a minion, well, a resident minion, not a student minion. I tell her my story and then she is off to confer with Dr. K. GRAPHIC DETAIL WARNING: What follows will be gross, but there’s no reason to pretty it up, so continue if you dare.

Dr. K arrives with minion in tow. He asks what happened and I tell him that I got tired of having the cyst drained all the time, so my body just decided to pop that pufferfish and let all the goop out. He seems a little surprised. Unfortunately, I can’t escape the probing exam due to bleeding. Dr. K asks if I am sure the fluid and blood are coming from my vagina. I tell him I am quite familiar with my vagina and yes, that’s where the gushing is coming from. I tell him it looks like the mucus-y blood goop that they drained out the last time and showed me in Radiation. I get warned that if I get dizzy or weak, I need to head to the ER, but he believes I am correct. He is not as cheerful about it as I would hope. I don’t know why I would think he would be, but I was a little let down that he was not as excited as I. Poking around in the darkness with probing tubes, Dr. K and the minion concur, the cyst has possibly eaten through or eroded my vagina. The good news is that it’s relieved all the pressure on my bladder and rectum, and that precious kidney, but the bad news is that there’s blood and there are other concerns that makes Dr. K get the serious face and tell me that let’s do another month on the chemo pills, and come back in January after the holiday and we will come up with a plan. He hugs me, and tells me to have a good holiday. His message is loud and clear. He does ask me how much I am troubled by the bleeding – I tell him if it’s a choice between blood and catheters, I’m going with blood every time. Before they found the first tumor I was literally hemorrhaging daily anyway. What’s a little bloody snot? He doesn’t think I need to worry about dying before the new year, so I’m okay with that. It’s now 5:30. I was going to get Indian takeout on the way home. I’m really no longer hungry. I am however grateful that the fucking pufferfish is no longer pressing against anything that will require scalpels and tubes to correct.

The waiting room is empty when I am leaving, except for the Christmas tree. I was the last patient of the day. It’s dark outside, and raining. I like dark and rainy, but it’s weird how the words sink in when I get in the car. Words like “eroded” or “eaten through.” Statements like “we’ll have to figure out what we’re going to do about this, and see what’s going on in there in January.” Threats of catheters. I had a much more positive outlook, like my body was done dealing with the puffer, and was pushing it out. Or that all that visualization about shrinking the cystic mass worked and my body was getting rid of the cancer. Never really went to the the “oh this is very bad, and not a good sign for me.” I mean I knew it wasn’t exactly a “good” thing, but I didn’t really go to “serious development.” There was no pain from the blowout, so that’s a plus. But sitting there in the car, I suddenly thought, what if this is the beginning of things moving to the end? What if my hopes that I can play this out for a few years more are going to come to screeching halt in January? What about the Riot Fest tickets I already bought? What if every thing I was planning over the next few months now has to be done now or it will never happen? The palliative care Dr. asked me what my line in the sand was – where I’d say no more treatment. I started to think about how I am not going to live out my remaining months sick in a hospital bed. I don’t want this to be my last Christmas. And while I know someone out there is thinking you have to be positive – thinking that isn’t being negative – it’s a totally legit fear. Sitting in my car, I was afraid. Afraid of running out of time before I’m ready. Afraid of my body failing me before I can do the things I need to.

And you start making lists of things you need to get done. It’s really numbing. I had to run to Giant to get a few things, and I just kinda wandered around. Then I headed home, trying not to focus on the dreaded bad words, but more on that it could be good, and to just enjoy the holiday. It wasn’t an easy ride home there was a lot of scringing on the way home (screaming+singing = scringing). And I hesitated on telling Andy anything negative. Not that there is any definitive negative, but I know my doctor and I know what he was saying without saying it – but I can’t just pretend it’s all glitter unicorns and dancing cupcakes. The ticking clock is always there..lately I had a few days of feeling almost normal, albeit crazy tired, and for the briefest of seconds I thought that maybe the cancer decided to enter remission. But then there were those motherfucking hawks. Dirty motherfucking hawks.

So since Monday, I am still bleeding. I go back to the Dr. on January 4th. On the plus side, if I lose enough blood, they will give me fresh stuff at the hospital, and I really, really, really enjoy getting new blood. No really, there’s no sarcasm there. I like a fresh pint now and again. The things you learn to enjoy when you have a cold uncaring tumor eating away at you from the inside. Jello. Blood. Headphones. I am kind of nervous for the bleeding to stop, because what if the reason it stops is because pufferfish has reformed and is going to resume blowing up again. But what if the gross ooze is actually doing more harm than good in flowing out of me? I mean Dr. K wasn’t too concerned, and in fact, was quite pleased, that his probing swab didn’t make me leap of the table screaming. That was, by his definition, a very good sign. So now I just sit around, leaking. I am trying my best to make the house of Christmas vomit a joy for Andy this year, even though he says he doesn’t care. I am even going to try and bake some of my amazing cookies this weekend. I am doing okay as long as I stay medicated and take lots of naps. (like the two I had writing this) I even made it into work for two hours today. I am mailing Christmas cards. So while life changes, it still stays the same. I’m not sad or depressed, just anxious and afraid – it will all work out as it has to, I just don’t want it to happen quickly. And just when Punk Rock Bowling is coming to Asbury Park.

Well this was much longer than I thought it would be. I still have several others to finish, but I think it’s bedtime for this monkey. We have almost located all the Christmas bins that Andy denies existing – I found 2 just this morning, but I am still missing the box with the dancing Santa lights, the bottom of the crystal tree, and the ice skating snowmen. I have a lot of Christmas shit even with the purge that has been going on all month. I did acquire a lovely black flamingo ornament for the white tree the other day. I’ll share some of the more charming ornaments with some photos on the ol’blog when all the trees are up, and the house looks like a magical forest. I do really enjoy overdoing the decorating. Who needs tasteful when you can have this beautiful Christmas disaster? Even the outside of the house is improved by my overdosing on lights – you can barely tell that the front porch is crumbling and collapsing. Andy better board up the porch before the skunks, raccoon and whatever else roams the town at night crawl into the basement through the holes.

And that my friends, is it for tonight. Hopefully I will find my way back before Christmas. Now I need to sleep sweet sleep. Buenas noches mi pequeño amigos cucaracha.


And Then It Was November…

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.


100 Reasons to Be… (Fill in the Blank)

I needed a list to remind me. It’s way too easy to get sucked in to the black hole of despair.

  1. Andy
  2. Friends
  3. Family
  4. Spring
  5. Fresh Air
  6. Long Fast Drives
  7. Roads with lots of curves and air
  8. Fast Cars
  9. Corgis
  10. Music
  11. Cheese
  12. Blankets
  13. Netflix
  14. Cemeteries
  15. Sunsets
  16. Sunrises
  17. Birds singing
  18. Coloring Books
  19. Pizza
  20. Ice Cream
  21. Badgers
  22. Llamas
  23. Babies
  24. Komodo Dragons
  25. Laughter
  26. Tears
  27. Warm Showers
  28. Swimming Pools
  29. Naps
  30. Flowers
  31. Vikings
  32. Good Movies
  33. Rainy Saturdays
  34. Christmas
  35. Eyebrow Waxing
  36. Dreams
  37. Leggings
  38. Memory Foam Pillow
  39. Hugs
  40. Sleep
  41. Oceans
  42. Swimming
  43. Meatloaf
  44. Cookies
  45. Warm Breezes
  46. Feeling Healthy
  47. Puppies
  48. Thunderstorms
  49. Rain
  50. Rainbows
  51. Giggling
  52. Bad morbid jokes
  53. Laughing with Andy
  54. Cliffs
  55. Shooting stars
  56. Memories
  57. Sandals
  58. Rolling down hills
  59. Fainting goats
  60. Painting
  61. Writing
  62. Dancing
  63. Bubbles
  64. Tattoos
  65. Pedicures
  66. Reading stories
  67. Reading
  68. Poetry
  69. Horror Movies
  70. Chocolate
  71. Chocolate Milk
  72. Journaling
  73. Splashing in puddles
  74. Letters
  75. Old pictures
  76. Being alone
  77. Learning
  78. Halloween
  79. Barley sugar pops
  80. Sweet corn
  81. Peaches
  82. Cherries
  83. Whoopie pies
  84. Ginger beer
  85. Vodka
  86. Herbal medication
  87. Lavender
  88. Kites
  89. Hoodies
  90. Road trips
  91. California
  92. Puppets
  93. Breakfast
  94. Cake
  95. White chocolate peanut butter
  96. Stars
  97. Sleeping with the windows open
  98. Chanting
  99. Tea

100. Heartbeats

Well there it is. I’m not sure what it is a list of other than good things. I can get through today. And I am willing to give tomorrow a shot too.


Tarpits, Minefields, and the Joy of a Tuesday

Well here it is, Tuesday. I feel like I have slept most of this month away. I am up and awake now, before 10 am, out of bed, which is crazy, because the only reason I was getting out of bed before 10 am for the last three weeks was for dr. appointments and to puke. It feels strange and wonderful, and shaky. I’m craving a mint hot chocolate, but today is shower day, which I can’t take until Andy is awake to do a new bandage on my back.

So what’s new in my world? Lots and nothing. I’ve been down with the sickness pretty much every day. I feel better one day, and think I can actually be social and do things, and then someone is unknowingly carrying a rare virus that is usually defeated quickly by your immune system until it gets to me, and then hello, it’s a human with very little resistance, let’s dance. I am sure I’ve endured the black death the last few days, and probably some extinct pox. I’ve puked more in the last 30 days that I have in my whole entire life. And that’s with using appropriate nausea control techniques. And the things I have puked in and on are countless! Plus let’s not forget that tube in my back that gives me an added thrill every time my automatic nervous system spasms. It’s good times.

The tube in my kidney. What a pleasure source that bad boy is! I did get a mini-reprieve with it, though. When I went in for my tube change, I laid down my case for why it should come out, and almost won. But using logic, my plan was confounded. We agreed to leave a tube in, capping it off, sans the pee bag, for two weeks – if my kidney goes back to doing it’s job without complaint, then they will pull it. In the meantime, I’ve discovered the sweet spot on my hip where I need to place my hand when I need to cough, sneeze or breathe deeply, so I am not thwarted by pain.

But let’s talk about pain. Last Wednesday, I went in to interventional radiology to have the tube change done. I took a couple oxy and some medicinal herbiage before the ride so I’d be more comfortable when I got there. I was. Then they promised me some more medicine, when they did the procedure. Unlike the draining of the cyst, I don’t believe they give you any medication to help you be drowsy. No, they are very kind to you, promising pain relief until they wheel your ass in the procedure room. Then they tell you to get on your stomach, put your arms above your head and trust they will not hurt you. They lie. First they start poking you in the back with needles they claim are local anesthetics. Just a pinch they say. Just a pinch. Just a pinch of the claw of giant crustacean tearing into your flesh like it intends to eat you. I stay surprisingly still for the first two shots. Then the third hits a nerve or something and I elevate three feet from the table and mutter “ouch”. I think the team realizes that they might have hurt me. Now, I am shaking from the pain, and it’s freezing in there, so I shake for the rest of the procedure. They took out the old tubing and put a smaller less cumbersome tube apparatus in there. They did a really good job with the bandage. I get to roll back on my back and go to recovery. I’ve done really well they tell me. I just want to go home. They must have given me fentynal at some point because I’m mostly not in pain now. I get dressed and they even let me walk up to meet Andy.

I was hungry. I wanted one of those turkey and cranberry sandwiches from Panera. I went in with Andy at first, but realized I needed to be back in the car, so I gave him my order and went outside. He brought out the goods and I ate a cookie and some lemonade. I thought I was going to be fine. Just not really hungry. The sandwich could wait. Then the meds started to wear off. I didn’t bring any with me. In the next ten minutes, my pain went from 2 to 2.4 trillion. Every inch from my waist to my neck on the right side of my body was a fucking minefield of pain. I do not exaggerate when I say that speaking hurt me. Breathing hurt. Coughing was some primitive torture activity. I couldn’t cry, I couldn’t talk, I could only whimper like I was hit by a car and left alongside the road to die. I wanted to die. I wanted fucking morphine.

Finally we go home, I thought I was going to be okay. Then I tried to get out of the car and walk into the house. Every fucking step was a new adventure in torment. I got in the house, and faced the steps where my safe bed and vial of oxy were waiting for me just a few hundred steps away. And every step found me crying and moaning and doubting that I would ever get to the bed. But I did. I shoved some oxy in my mouth, and advil, and tried to smoke but couldn’t really inhale. Then I tried to lie down. That was not easy. I literally had to throw myself down on my right side and not move from that position. I told Andy if I didn’t get some relief in an hour, that we would need to call an ambulance. I was having really bad pain in my chest and back and I was scared it was serious. But I also tore cartilage in my chest before and it often would be painful if I was in a position that pulled at it again, so it could have also been that. I was hoping it was that. I nodded off for an hour and when I woke, I wasn’t in as much pain, so that was good. I was still paralyzed and unable to move, but I was no longer in fear of imminent death. Another four hours of sleep and I was almost able to move. By morning, I could actually sit up. A few more hours, and I could walk. Things were improving.

I couldn’t make my appointment with palliative care. Reschedule. I didn’t have the strength or the energy. I had to blow off the Bouncing Souls show that I was so looking forward to. I shouldn’t complain, my kidney was working and I could move and most of the time, breathe. I was still having trouble coughing and sneezing. Then the black wave of depression crept into the space where pain had been hanging out in my brain, and down, down, down, way fucking down, we went. If you don’t have depression, you can’t understand. I try to make it as visual for the untainted as I can, and this was like the La Brea tar pits of depression and I was a fucking woolly mammoth. It was all over except for suffocation. That sucking quicksand of sorrow ate me up, and the crying started. Without belaboring the incessant crying and snot-blowing, let’s just say thoughts during the breakdown run from “I’ve failed as a mother, and Andy will hate me for the rest of his life” to “what the fuck have I done with my life?” to “I’ll never get that PhD, great work dumbass.” Until you really spend a lot of time reflecting on your life and the possibility of a very short future, you can never understand that level of sorrow or failure. People can tell you otherwise for hours, but you can tear any positive self image down to smoldering ash in a matter of minutes when you start to consider things that will most likely never happen because there’s just not enough time. I’m just now starting to realize the psychological impact this disease has on me. I keep it together most days, but when this shit crumbles, it goes down hard and and fast.

I hate to keep harping on this but I feel I have to remind people that I write this to sort through what is in my head more than anything else. If the details of this fucking monster inside me helps someone else, I am thrilled, but writing is always for me. I love that people read it, I love that people comment on it, but I love the way I feel drained and empty when I stop writing, like all the shit that swirls in my head has finally been released or at least organized. Writing also scares me – when I see what I have only been thinking appear on the page it’s like tearing off a scab and wondering if it is ever going to stop bleeding. How raw this gets depends on how much pain I am in when I write – and sometimes I hold back because I can’t face another entry that is just all about my grief, and I know I shouldn’t. I can’t – because there’s no where else I can go with this. I know there are therapists, and I know I have friends, but let’s be honest here, very few people pour out what is really inside to anyone else, because we all want to keep our pain, our shame, our fears hidden. If you don’t, I admire you – I know I have secrets no one will ever know.

So now it’s evening – I went out for a bit today in the car. Visited work until I started to feel nauseous and then took a ride and spent some time in a cemetery until I felt better. Then I drove and cried and screamed and came home exhausted. Smoked my nausea away, and hoped for sleep, but no, my feet are twitchy and my legs are restless and so is my brain. Part of it is knowing that next Monday we’ll be talking treatment and progression (or hopefully, lack of progression) of this stupid C-monster and the damn pufferfish. And as many of you know, my friends are hosting a benefit for me on November 7th here. Some of my oldest and dearest friends from California are flying in and I am thrilled – it’s going to be amazing to see them all again. And I am sure many of my dear friends that live here will also be there and I am so blessed and grateful that they are doing this for me, but there’s a huge part of me that realized just now that it’s like saying goodbye to my loved ones and I don’t know that I am ready for that. I know that sounds negative, because anything can happen, and I do believe that, but I am also very much a realist who prepares for the worst, and the very thought of maybe never seeing them again after that weekend tears my fucking heart out. Just like every day that I wonder if I have told Andy every thing I want him to know – and hope that he knows that he changed my life and I love him more than I have loved anyone in my life. That, my friends, is my nightly terror – leaving my son alone in this world. I don’t care about anything else. I just want to make sure that my baby is going to be okay and that he knows how sorry I am that all this has landed in his lap during the time of his life when he should be discovering what he loves and who he is and he’s stuck taking care of me. And the tears flow again.

I was trying so hard to keep this light and fucking positive and I can see that that has been a huge fail. So much is undone. And you’ll think to yourself, well get out there and do it! And the reality is that there are somethings you don’t just “go out and do.” When faced with what you are going to do, you have to let go of the dreams you had that can’t possibly fulfill because it’s just not possible. And you grieve for all of them. So much grieving. And even as I type this I’m trying to self-talk myself calm – I want to bolt and stop writing because it hurts so much. But this kind of pain is progress. Unlike the physical pain – which is nothing more than annoying. And at this point, more of an annoyance than a hindrance. There’s that at least.

Well, I am spent for tonight. I’ve tried to enhance this post with some cemetery pictures from today. It didn’t work. Maybe I didn’t save them in the right format. Who knows. The featured image was supposed to be this crazy tree that is way at the back of a pretty hidden entrance to a cemetery I frequent. It always has artificial flowers attached to it. And it’s updated regularly for the season. I like to sneak into the cemetery that way so I can check out the tree. People don’t appreciate the subtle beauty hiding in the places most people ignore. I’m always going to find my happy in an interesting cemetery. It’s like water is to my soul. Maybe Saturday when we go to Philly, I can convince Andy that we need a stop at Laurel Hill…it’s such a beautiful place in the fall. Just so I can take a drive through and enjoy the trees and death and decay. I am going to head to sleep, so I wish you sweet dreams, cupcakes. Thank you and come again.


It’s Like A Monkey on My Back, Except No Monkey.

I was trying to coax myself back into a blissful oblivion, which is evading me tonight. The last few days have been pretty much nothing but tears when I don’t specifically do something to keep myself busy. Of course, as I was sitting here, reflecting in the warm glow of a decorated bic as I try not to burn my finger, I noticed the flashing red and blue lights just down the street on the corner. Of course, that window has an air conditioner in it, and made it impossible to be a gawker. Since I wasn’t gonna be able to sleep with the lights flashing anyway and I wouldn’t know what was going on unless I went down the stairs to the porch, I figured I would write and cry and vent because at this point I don’t know where to go with this shit. I don’t even know what it is…all I know is that it’s a fucking huge ache I can’t stop.

I wish I had an easy answer, but none of this is easy. One thing goes better, another falters. A million questions suddenly need answers, there’s a million wise things I want to tell Andy and a million things I want to leave behind for him and any future progeny. I hate seeing him so sad. It kills me that this is killing him. I am afraid of who will be there for him when I am gone. Or who won’t be. And that’s the pain nothing touches. I can’t smoke or swallow that away. And it’s more physical that anything else I am feeling.

I would trade anything to just have normal back – the daily bullshit, the humdrum, the worrying about just bills and heat and easy shit like that. If I could just undo what’s been done. I just want to wake up and have it be okay. To be okay.

Being sick last week made me realize that it’s going to get really bad in the coming months, and I don’t know that I have that kind of strength. And before you tell me how fucking strong I am and all that other supportive shit that I appreciate but right now don’t care about, I know me better than anyone, and I know right now, I am not sure of anything any longer. Other than I now want this fucking tube out of my back too. It’s going to make it impossible to drown in the Pacific Ocean if I can’t get the tube underwater.

That was a joke. Kinda.

Look, here are the facts. You may want to stop reading this blog and forget you ever found it. Because it’s going to get more raw and more painful because this is where I go when my head is so full of crazy thoughts that only moving my fingers across the keyboard can help line them up and get it together. Again, it’s not about needing people to console me or make me feel better. It’s about me making me feel better in the way I know best. I am not going to lie and tell you that I am going to be a spirited fighter until the end. I am not going to be the smiling turban headed warrior all those fund raising ads show. I don’t know what I am going to be. I might be a sniveling fucking crybaby who feels sorry for herself. I just know that all I keep telling myself is one more day. Just one more day. You can get to tomorrow. Some people would be thrilled to have one more day. Suck it up whiny bitch.

And I always feel so ungrateful. People do nice things for me and I am thankful and I appreciate it, but sometimes it’s like I don’t feel like I show it enough. And then the guilt comes in. I wish cancer was just about physical pain. That I can manage. The psychological part not so much. Even with my vocabulary I don’t have words that describe it – it’s like a million sharp daggers that tug on the strings of some weird emotional harp that’s crazy out of tune. I don’t know what I want. I don’t know who I am. I am broken and trapped and very much afraid. And I can’t even tell you what I am afraid of. If you knew the truth of this, you would know why that is so scary.

I’ve cried as much as I can right now. I’ll wake up in a few hours with slimey sticky eyelids and a clogged nose. I’ll lie there listening to the birds and see it getting lighter and everything will seem normal and then I feel the stitches tug in my back and it all comes back.

One more day. Lots of people are suffering more than you are, you whiny bitch. You should just stfu. And I’ll tell myself one more day.

Johns Hopkins called today. No trial for me. The cancer’s rare and pretty and all, but not what we’re looking for. At least it was a shot.

Next Wednesday my back tentacle is scheduled to be replaced; I am going to advocate removal. Maybe I will feel better once my body is no longer is a constant state of stress. Next Thursday I see palliative care. The assuring you the best quality of life people. I see a huge breakdown coming when I go there.

I didn’t want this; I don’t want this. I am going to try to close my eyes for a few hours before the sun is up. One more day.


Pufferfish Takes Its Show On The Road

Joyeux après-midi, mon petit kangourou amis I’ve been putting this off, not because I didn’t want to write it, but more because I am mostly a miserable bitch these days, and I don’t like that part of me. There is no position in which I am comfortable – the best I can get to is tolerable, and that takes a special medication combination that usually ends up with me falling asleep while typing. Or forgetting what I was typing. Or both.

WARNING GRAPHIC DESCRIPTION OF THE PERILS OF THE PEE BAG AHEAD. If you want to skip over the gruesome details stop here and pick up at the word SAFE.

I just need to bitch right now before I get into the trip to John Hopkins. My thighs are covered in black and blue marks from the tape constantly pulling as it holds the vagina tail to my thigh. It makes me feel like I have to pee constantly. Today there was all sorts of blood and clotty strings in the bag – gross as it is, it’s kinda like a sick set of sea monkeys. This is somewhat alarming when you go to bed with normal pee and wake up to bag of fruit punch. All the walking I have done this week cause irritation in the urethra and caused bleeding. I called urology who told me to stay in bed and drink more water which is silly, because the more water I drink, the more often the sacks of pee need to be drained. Then sometimes it causes a spasm, and then there’s more blood and tissue scooting along the tube. It hurts. I try not to take opiates and just stick to natural cures, which helps most of the time, but the last few days it took the muscle relaxers, medicinal herbs and tinctures and opiates to try and get to a point of just calm. And the hot flashes are still happening, not as often, but dear dog, just let me sleep. The nephrostemy is a piece of cake compared to the catheter, although the last few nights I wake up with the nephrostemy bag ready to burst because that kidney works really hard at night. Rant over.

SAFE TO RESUME READING

Andy and I made the trip to Baltimore to Johns Hopkins to get a second opinion yesterday. It was actually a pretty easy ride, it took just under 3 hours and we did not get lost once. I had to super medicate for the ride, because I didn’t know what to expect being in a car that Andy is driving for that long in my present condition. Needless to say I was quite comfortable when we arrived at JHOC. Well not really, with my vagina tentacle currently holding me down, I’m not ever really without discomfort. I suppose I could really just say I had a really good attitude when we arrived. Andy dropped me off at the door and I found my way to where I needed to be. I found the Women’s Health clinic on the 6th floor – JHOC is huge. Kind of intimidating. You get a wristband as soon as you enter the building – it’s like going to a show. Then there are there touch screen check-in kiosks when you get to where you are going. I tried, but I couldn’t get registered that way. Of course not. When I finally did get registered, I was handed a questionnaire and herded off to the waiting area. And wait for Andy and my nurse navigator to find me. While I was waiting, another female patient came back to the waiting area escorted by a nurse; she was clearly unhappy and shouting about how she should have gone to another hospital because they aren’t giving her the help she needs here. I’m trying not to judge, but her whale tail draws my attention as she’s huffing and bellowing in a seat four seats away. What I want to say is, bitch this hospital is ranked 6th in the nation in treatment, where ya gonna go? But I just keep answering my questionnaire.

I am supposed to meet my nurse navigator here. She said she’s meet me at 1:30, and when I look at the clock it 1:40, and I realize my ringer is off. I rifle through my purse, and find my phone and sure enough I missed her call. I quickly call her back and let her know I’m waiting, when they call me back to the exam room…she’ll meet me there. The nurse brings me back to do my vitals, and the nurse navigator arrives, her name is Liz. Introductions ensue, and I do some deep breathing exercises and surprise surprise, the combination of herbal medication and meditation has kept my blood pressure low. I’ve lost more weight. I’ll take that. I confess to my use of plant medication, and then of the JHOC minions comes in to review my medical history (because she didn’t have time to go through the 5 discs of medical history I provided to them minutes earlier). I tell the sad sad tale of the tumor gigantica and the first series of chemo and then the emergence of the cyst and its current incarnation and end with me crying that the tubes are not letting me live my life and that I how is this quality of life. The minion is very compassionate. They teach bedside manner well here. I regain my composure and make jokes. The Pietkiewicz Way. When faced with horrible circumstances, make a joke. Make many jokes.

Andy asked me on the way what I was hoping to hear at the appointment. I told him best case scenario would be to have them say “we’ll whisk you into surgery tomorrow and cut that cyst right out” and worst case is that I leave the way I came. I relay this to Liz and the minion, Shanae. I just want to be able to walk and sit and sleep without encumbrances and pain. That’s all. I don’t even care that my days are rather numbered – all I want is for them to be good days. I don’t like the bitch this pain is turning me into, I don’t like that taking a shower or making a sandwich or getting some juice becomes a gargantuan task that requires a logistical plan to move myself and my coterie of pee bags without any tubes catching on something or dragging behind. I just want to not have to wear a long skirt to go out to hide my vagina tentacle I hate the spasms and gasping when the pain shoots through my bladder. I hate that I feel trapped and isolated and incapacitated. I feel cheated.

I feel I am keeping it together pretty well. My mouth is drier than the sahara and I am out of water. Finally the Dr. comes in. What is with the Drop Dead Fred look these days? He’s a much classier DDF. He sits down, and we do a quick review of my history again. He’s a really nice guy, and probably just 30 years old (Ashley F, are you reading this? I didn’t see a wedding ring, you could be a stay at home mom, like for unicorns or cats) He’s rocking a emerald green and royal blue ensemble, so he’s a man of fashion sense and confidence. I like him. Then I brace myself for what’s to come. No, surgery isn’t an option, and not just because I’m a big girl, but because the cyst is smack dab in the middle of the area where I received the radiation treatments when I was first diagnosed. I already knew that I had received my lifetime dose of radiation in that area, which is why there was none this go round. When you get radiation, it forever damages the tissues in the area. This makes them slow to heal and regenerate if you cut into them again. And removing the cyst would require clearing the margins around it which as we know means goodbye rectum, bladder, and vagina, and hello tubes and bags (not all that different from my current rig of hoses and external bladders). And that would entail the removal of a massive amount of tissue in an very damaged area which would be brutally slow to heal and would run the risk of massive infection. The risks of that surgery would far outweigh any minimal benefit and would likely shorten, and without question, diminish the quality of, my life. He would start me on a regimen of more Tamoxifen (boo) and Progesterone which has the delightful side effect of making me even fatter and more miserable emotionally, or since I am not a big fan of Tamoxifen, there is a chemo drug called Doxil which has had some success. Don’t google it. It’s terrifying, but it could work. There’s some other hormone therapy and medications that have shown some success. The prognosis isn’t going to change. I have recurrent endometrial stage 3b cancer, that shows signs of metastasis in the lungs. It’s got a super low survival rate. Recurrent endometrial cancer isn’t one you survive. That said, Dr. T said that the issues I am having now are not really a result of the cancer, and in fact, the cancer is slow growing, and is mostly contained, and that the cyst is the source of all of my woe. For this, we discussed the risk of putting a drain in the cyst for several months to keep the fluid from building up and the possibility of it seeding cancer elsewhere vs. suffering with a catheter forever the duration. As the brutal urine extraction device is painful and unwieldy, I would rather take my chances with the drain. Dr, T agreed that at this point the risk is worth the procedure and said he would recommend that to Dr. K in his notes to him. So hopefully, the visit on the 21st will begin with “let’s pick a surgery date for a drain”. Dr. T said that if Hershey’s interventional radiology still doesn’t want to do it, then give him a call and see is JH’s interventional radiology will. He said the other option is another nephrostemy, but not a really good option. Finally, he said there is the smallest of possibilities that I could participate in a trial that is currently showing promise at JH, and just was published in a medical journal, but he would need a slice of my tumor to find out if there are these special satellite cells in it, because my tumor would have to have them in order to be considered for the trial. Other than that, Dr. T said he would have done exactly what Dr. K did, and would alternate chemo with hormone therapy as my cancer is not aggressively trying to take over. He brought up quality vs. quantity, and I quickly told him that I’m on the side of quality – that being riddled with silicone piping in my excretory systems is not how I want to go out. I would even suffer the permanency of the nephrostemy tube, if only, oh my dog, please, if only I don’t have to live with this catheter.

He also said that I should just continue treatment with PSHMC’s Urology department too. We discussed the potential for self catheterization during the day, and with the difficulty they have had inserting catheters in the hospital because the cyst is in the way, why would anyone think I would have an easier time of it at home? He did say there is a suprapubic catheter that could be inserted into my bladder through my belly, and while there would still be a bag, it would not be brutal and painful like the vaginal one is now. Wicked cruel vagina pee serpent. All I know is that it needs to go. It’s like a fucking albatross, except it’s not around my neck, it’s shoved inside me. So there you have it – even though I left upset that there was nothing else to really do, that wasn’t already being done, I felt validated that my Dr. was doing all he can. I knew that in my gut already, because it clearly pains Dr. K to give me bad news, but now, I’ve heard the same things from another well respected professional, so I can just say fuck off to the next person who says “there has to be something else they can do.”

So I held my breakdown in check until I was in the car, and even then, Andy and I just made death jokes. Being told this kind of news takes days to sink in, the sheer magnitude of what it means is overwhelming. I know I’ve told a handful of people personally, but with shitty news like this, blogging about it is easier than texts or phone calls. I don’t have to hear people tell me their sorry. I don’t have to see sad faces. I don’t want to be around people who are saddened by this. I want to spend my days laughing when I can. I want to say cancer fucking sucks. So I called my little fucking hummingbird friend Debbie, and had the conversation that only someone else who has had to face cancer can truly understand. And at the risk of alienating people, I need to be brutally honest, just give me fist bumps, stop asking me how I am. I have cancer, I’m sick and in pain, that’s my fucking reality and I am tired of pretending that my fucking world is fine. Yes, I can still laugh and smile and appreciate the beauty of the world around me, but asking me how I am doesn’t help me or you. And stop talking about miracles and me kicking cancer’s ass because while it may happen, it probably won’t – and I am not being pessimistic, I am a realist. I’m going to do all I can to prolong my life as long as it fit in with what I want out of life. Please don’t tell me what you think I should do, unless you yourself have been in my situation. Because until you are here, you don’t fucking know. And stop talking about this being a battle, and being a survivor or keeping up the fight, because you what that implies? That if I die, I failed. That I was not strong enough to overcome this disease or that I didn’t have the strength or will to beat this disease. That’s a judgment on me that I don’t need. Bottom line is this: In a perfect world, I will live a long disease free life. In a perfect world, I will go to my next appointment and Dr. K will have a cure. In a perfect world, no one will ever have to go through this again. It’s not a perfect world, and while I am not giving up hope that things can turn around, I am also not going to live in fantasy land, avoiding the very probably outcome. And I am gonna make death jokes. Because I can. I know I’ve said some of this before, but it bears repeating. I am comfortable with dying; I’m not afraid of it, but I am not going to stop living to wait for it. I am not ok with what is happening, but I am not going to sit in the window and wait for death. Support me by spending time with me and laughing with me. I need as much laughter in my life as I can get. And there are only so many names Andy and I can come up with for the hideous hose that rules my life right now. (Thank you Deb, for the conversation that was long overdue, and for letting me rant and not trying to make anything better, punches to you my friend)

Well it’s taken two days to write this. Oh and one other thing – think about this whenever you have to talk to someone who has something unfortunate going on in their lives – don’t say “ I felt so bad when I heard” or “I feel so bad that I didn’t know” – you know what that does? It makes the person feel like they have to make you feel better, which is the exact opposite of what they need. I hate that people get upset when I lay out the facts, because I feel like I am hurting them, and what I should be doing is using my energy to stay healthy. Not trying to make you feel better about my disease. I know it’s all done with love, and with a pure spirit, but it makes me not want to talk to anyone because it’s hard work to make other people feel better about my sad news. And now that I told the story, and vented, it’s time to release the sea monkeys in the pee bags to the ocean via the toilet-ocean pipeline, and then take some more pills and go to bed. I plan to venture out in the morning with Andy to go get supplies, so I can stop suffering from the assault of this nasty tape that is holding on my bandage on my back.

On the positive side of things, you can order replacement catheter bags from Amazon. I got to have onion rings when we went to JH. It’s only three weeks til OWTH in Philly/Baltimore. And since I can’t go to Riot Fest, I can use that money to get my passport. Sleep well my friends, and visitors, and critics. Hug your people and tell them you love them, and tell them how much they mean to you. And appreciate your excretory system. For real. Love you all.


This GIrl, Her Pufferfish and a Kidney Walk Into An ER…

It’s hard to believe that it’s barely over a week since I saw the oncologist. Last Monday, I was pretty happy, normal person, albeit with a massive pufferfish exploding to new sizes in my pelvic cavity. And now my world is fucking upside down and I am angry, hurting, scared and lost. So I caution you now, this mostly fueled by the anger I have for this fucking disease and is going to be graphic, and will likely include overuse of the word “fuck,” but at this point, I don’t even fucking care. You might. I don’t. You’re not the one with the giant pee penis rammed into their vagina like a rolling pin, walking around with pee bags attached front and back because your body fucking betrayed you more than you thought it could. I am.

So yeah, there’s humor in here, but only because being fucking bitter makes me funnier. Let’s tell the story. We all know that the whore of a pufferfish is still growing in my pouch of Douglas. We all know I wanted just two more months of no treatment so I could have some fun before I got really sick again. I was dealing with the fact that the stupid c-monster wiggled around in there, sometimes blocking my bladder, sometimes causing me real pain, but things were working for the most part. I was dealing with the almost hourly trips the bathroom at night, the lack of sleep, the constant urge to pee at night. I could live with it, as annoying as it was. Until the ability to pass the pee stopped on Wednesday night. And I am going to get even more graphic here because what the fuck, I have to live it, so maybe this will help someone else who deals with something like it. On Wednesday night, the 12:30 trip to pee ended in a couple drops and about 40 minutes of cramping, cursing, writhing, crying, more cursing, wriggling, standing up and sitting down, and frustration. Sleep five minutes. Back to the bathroom, repeat. All fucking night. For those of you who have given birth to spawn vaginally, imagine that moment when you want to push and they tell you to wait, and there’s all that fucking pressure and you’re just like when can I push this monster out of my uterus??? Well that was what this feels like. I’d been dealing with a milder version of it for months, but at least then it ended in finally being able to pee. Not this time. The sun came up and I got ready for work. Usually I had no problems during the day, because the movement of being up and around would move the cyst away from whatever it was blocking, and I could be normal during the day. Not this time. All morning, nothing. And it is as uncomfortable as anything you could imagine. I google my symptoms and web md tells me I should probably go to the ER. We agree. And off I go.

Since I won’t see a Dr. anywhere but in Hershey, I make the hourish drive there. I’m doing great until I hit Hersheypark. Then my bladder, deciding it had had enough fun with me for the day, bursts like a fucking tsunami in the car without warning. And what do you do when you are pissing yourself at 60mph, and there’s nowhere to stop, and what would you do anyway, if you could, stand on the side of the road and drip? AND it’s raining. AND the get gas light just came on. I did what any normal person would do, I drove to the ER and parked the car and panicked. No blankets, no towels, not extra clothes, soaked in piss. In the rain. 200 feet from the ER. I can’t go get dry clothes at home because I would need to get gas and I can’t get gas because I’d have to get out of the car. I can’t just run over to K-Mart and get some dry things because I am soaked in pee. Finally, I try calling some friends to see if they can run to my house, get me some dry clothes and bring them to me. My friend Lori agrees to help me out and while I am waiting, I decide that I cannot sit in the car in this state for over an hour. I call the ER, and ask them if they could send someone out to get me with a wheelchair or something. They do. And I cover the driver seat with shop towels to try and soak up the mess.

The ER was awesome. They got me right to a room right away, and got me out of my pee-pee pants. I have to say that the ER staff was downright amazing. Now, my body has agreed to let me pee a bit from time to time. At first we’re just going to make sure there’s no infections or what not. I point out that I know it’s the bloody pufferfish’s fault. They do an ultrasound on my bladder and kidneys. My bladder is full. Even though I just successfully completed the attempt to urinate not two minutes before. This is not good. My kidneys look nice, but the right one is showing signs of distress, because the beast in my belly is putting a kink in the right ureter and urine cannot pass from the kidney to my bladder as efficiently. While all the poking and probing is happening, Lori, my saviour, arrived with dry clothes, and my bff Kelly came to visit and brought me a phone charger. You see there’s wireless in the ER, but no cell service. So I need to put my shit on blast on Facebook (which I’d probably do anyway) to try to get messages to the people I would usually text. And for that, I need my phone to be charged. It was like having two guardian angels in the room. All the while they were there, we’re kind of just waiting. I am getting scolded by the wonderful nurses for escaping the monitors they have on me and leaving my room. We set the bed alarm off trying to figure out how to make the back go up. We ring the nurse just to ask her if our pizza is here yet. We make their jobs fun.

Finally, the resident surgeon from urology comes in. We talk about how I was going to have a consult on Tuesday about a stent in the right ureter. I am still not sure how that is going to help the bladder issue, but I am not the medical professional here. He’s hot, not super hot, but definitely a cutie, and probably barely older than my son. Oh good, and now he has to examine me. Now, I know a lot of people say that they don’t care about how they look when they’re sick and the doctor is examining them, but I am not one of them. I am completely self conscious about being obese, with radiation scarring, the myriad of scars from laparoscopies, and my sad sad vagina. I don’t really want to look at my vagina myself, so I feel bad when others have to. And that’s sad, because the vagina and I had a lot of good times together, but that was over 20 years ago, and now, it’s just another body part to betray me. Cute Dr. Brian gives me some options – get a catheter and come back Tuesday for the stent, consider just getting a nephrostemy on the right kidney today, or next week, do nothing, or just get a catheter. I say we should just try the stent, and then see what happens. He goes off to consult the attending, I mentally try to remember his full name for my friend, Ashley, who needs a rich doctor husband.

In the meantime, Kelly and Lori have to leave…it’s becoming late and it doesn’t look like I am going anywhere. Nurse Kristen tells me they are just waiting on urology. Dr. Brian comes back and says, “Hey, I forgot one option, we could admit you and do the stent in the morning!” I like that option. I’m getting a catheter anyway because they will need it for surgery, and Dr. Brian initials my right belly with his purple sharpie so they don’t screw up and put the stent on the wrong side and he’s gone until the morning. Nurse Kristen brings in some helpers to do my catheter, a nice young lady, and another cute male nurse. Oh fuck yeah, bring on the vagina/body image shame round two. Kristen tried to put in the catheter, but it won’t go in, the male nurse is just hanging back and Kristen and the other female nurse go back and forth, trying to jam this thing inside and it’s not going. Finally, they ask the male nurse to do it. He manages to get it in the urethra on the first try, and I breathe a huge sigh of relief that that inhumane torture is over. Or is it? Then they start an IV. The first bag is fine, until the vein blows up and now we are on to the other arm. All this time my blood pressure is through the roof because I am in pain, terrified, and don’t want a hole in my kidney. I break down once with nurse Kristen, and once again when Dr. Brian comes back to check in about tomorrow’s surgery. Kristen puts the IV bag on a hook in the ceiling so I can no longer get out of the room. I am trapped until I am admitted. Five minutes later they come to take me to a room; then immediately cancel it, because they now can’t take me to that room. I remain in the ER.

I have to say that Kristen was awesome when I was crying and sobbing about how this is so unfair, that I have plans for the next two months and how this was not supposed to happen and then cracked up when I said that I didn’t even get any of the good side effects of cancer like losing weight. Not me, my appetite is just fine. Then she said that patients like me are the reason she is a nurse, and that she was grateful to me because sometimes she forgets why she does what she does, to be there to comfort people when they are scared. She said she wished all her patients were like me, and she just held my hand. I don’t often say things like this, because I’m not gonna lie, I have some unresolved shit with my dead mother, but in that moment, it felt like my mom was there trying to make me believe it was going to be OK, because my mom was a nurse too. I was so grateful to Kristen that night, and even more so when she tried to find me jello and could only come up with two vanilla ice cream cups which became that night’s dinner. (I also had a turkey sandwich, later).

Pause here for a breaking funny story:

Andy comes in after his shower, and I tell him that Urology won’t even see me until September 14th, which means I can’t go to Riot Fest or the Whoopie Pie Festival, because there’s no way I can be up and about with the giant pee hose stuck in me for a drive to Chicago, as I am only comfortable standing or lying down, he does what Andy does best – he offers this solution:

We could get a u haul and attach it to the car and throw you in it on your back, and punch some holes in the side so you could breathe back there or maybe get you an oxygen tank.”

How can a mother not be incredibly proud of such resourcefulness?

Back to the ER now. So the evening wears on – I am being admitted but who knows when? I am now forbidden to eat or drink after midnight as I will be having general anesthesia for the stent procedure. I suck down all the water I can before I become gremlin-like. They pull my IV off the ceiling and put it on an electric pump. I get a new IV in the opposite are because the other one is swollen like a bad molar. Around 2am, I am being moved to a new room. It’s all the way at the end of the hall of a new section of the ER that I have never been in before. It’s dark, and it looks like the holding cell for psych patients at our local ER. Not the psych hold thing again I hope. But in comes Nurse Dan. Again, a handsome young man who will probably take a look at my hideous nether regions. More anxiety. The way they have my IV inserted in my arm, every time I move I set off the alarm on the pump and Dan has to come running. He kindly asks me if there’s any possibility of being pregnant. I snort, and say nope, no uterus. He asks me my favorite question “when was your last period?” I proudly state 2011. When I answer my fifteenth interrogation of the night, I try to sleep. Only to be woken by some maniacal woman down the hall screaming at 5:45 am that it’s her health choices and she’ll make them and then screaming for Dan to get in there. Poor Dan.

Finally cute Dr. Brian and his attending and some other medical minions come to see me before surgery; I tell them that I thought it over, and if they cannot place the stent then do what they have to make my kidney well, and if that means nephrostemy, then that’s what it is. They are glad to hear this. And I am whisked off to surgery. When I wake up in recovery I demand jello, and discover they could not place the stent. Nephrostemy it is. That will come later. That one is an awesome “twilight” procedure, which means my ass will be awake. Oh fucking yay. Fortunately, that does mean I can eat jello. And drink water. No food, but at least there’s jello.

In between procedure one and two, I am taken to the second stage recovery from same day surgery. While I am there, the kindly nurse gives me some IV dilaudid/fentynal to help my pain. It brings me joy. Then two minions from gynecological oncology come by to see me, and tell me Dr. K is out of town, but they will see his associate this afternoon, and she will probably come over this afternoon. When they tell me who that associate is, from my drug fueled fog, I become lucid enough to tell them “don’t bring that bitch here, I have enough stress going on without her lack of bedside manner to make it worse.” The two minions stared at the sudden transformation from my happy cloudy self, to the alert demon before them now. I tell them she tried the put a psych hold on me the last time I saw her and I don’t want her near me in my present state. I will wait til Dr. K returns. I thank them for their time and they leave, and that is the last I hear from gynecological oncology during my stay.

Around 3pm, I head to radiology for the nephrostemy. They give me some meds to relax me, and some local anesthesia in my back. Neither eliminates the stress of what’s about to happen, the pain or the anxiety. I am lying face down on the table while they drill in my back to get to my kidney. After a few false starts, they hit the bonanza, simultaneously finding the only spot in my back that is not anesthetized Screaming commences as they try to get the pain under control; the pain subsides, but I am shaking so hard from the pain I can’t keep still. Somehow they manage to get the tube in and I am eventually returned to recovery. More pain meds follow.

Andy and Tom and my friend Ashley who left me to work for the Governor’s Office all come to visit me. I finally have a phone and a phone number and Erica and Paige call me to talk to me and it between my visitors and callers I feel pretty good and have not had any time to focus on the fact that in less than 24 hours, I have gone from happy-go-lucky cancer girl, to girl-with-a-tube-in-her-kidney-with-a-fucking-giant-cyst-that-is-causing-complications-forever. After everyone leaves, I nibble the snacks Andy and Tom brought and enjoy the flowers that Ashley graciously shared with me. I watch TV. I find that new pee bag became unplugged from its hose and soaked me and the bed. We wash, change and I get back into bed. More pain meds. Dr. R from urology comes by to say he’d like to remove the catheter as he doesn’t want me to have to go home with it. He says they will take it out at 1 am, and if all goes well, I’ll go home in the morning. I get some dinner, a delicious meatloaf and mashed potatoes and fresh green beans. No jello, but a delightful lemon sherbet. When 1 am rolls around, they finally remove the catheter from me. Liberation. I can finally get out of bed, and discover that my bag leaked again. I am not thrilled. Then I discover when the nurse’s aide pinned the bag to my gown the last time she changed it, she put the pin directly through the bag, and not where the pin can safely go. Now we need a new bag. We get things in order, I get to use the bathroom and actually tinkle on my own in one of those awesome “hats” and I try to get comfortable enough to sleep. I now have the IV in the back of my hand (location 3) it’s hard to find a position in which I am not kinking something up or cutting something off or being speared in the kidney by a hose. It’s a fucking circus.

Nancy, the nurse’s assistant or patient care aide I think is what she’s called, is a talker. I had her care for me back in December when I had the laparoscopy. One son is a genius, and is an aerospace engineer with no common sense, who now wants to be a lawyer, and her other son, well he’s just normal. Her husband had his arm torn off and reattached and when he’s grumpy, he makes her grumpy. She has a migraine but what can you do, you have to come for work. She cannot get over the beauty of the sunflowers from Ashley’s yard. She’s never seen anything like them. She’s loud and funny and talks non-stop, which isn’t helping with the sleep. I tell her I would like her to take the flowers when she leaves, and enjoy them, and she is overjoyed and begins to tell me how she is going to dry them and get the seeds so she can plant them in her garden next year. I finally fall asleep for an hour or so, and then the early rounds start – the urology minions first, then the radiology team. I am free to go, once I can get Andy to answer his phone. Andy also has to be here to learn how to clean my tube daily and to change the dressing – they offered to show me how to do it, but um, yeah, it’s on my BACK, and I am not an octopus with multiple arms nor am I an owl who can turn my head to see my back. I eat my breakfast and wait. I put the clothes on that Andy sent down with Lori. His picks were from the “these clothes are being thrown away” pile, so I put on the shorts with no elastic and decide to wear the shirt I came in with instead of the too small one Andy packed. Finally, sleepy head gets there and we learn wound care and off we go.

I get home, feel pretty good for having an hole in my back. I sleep most of the day away, until 11pm, when the no peeing thing starts all over again. Long story short, it was a horrible horrible night. I tell Andy I need to go to the ER, and I pack extra clothes and a seat cover in case of accidents and off we go. About ½ way there, my bladder lets go with no warning. Good call on the seat cover. I tell Andy to take the back way to Hershey because there’s a portapotty at one of the trail entrances on the state game lands. We get there and to my surprise, it’s been upgraded to a real national park bathroom. As gross as a portapotty but larger. I change and we resume our journey. Unfortunately I also have another bladder eruption as we are turning into the driveway for the ER. How can there be so much pee! Andy has to go get a wheelchair and bring me in that way again.

You would think the fun was almost over here wouldn’t you??? I would. I have to give an urine sample. I try to do it in the bathroom, and squeeze out a little. I go back to the exam room, and guess what? Bladder eruption, but this time I am on one of those pads, so it’s all good. While waiting for urology and the er docs to come by I discover that I can pee, but only if I am sitting on a fucking diaper on a flat chair, because it pushes the cyst back up into my body and lets the urethra do its thing. When I try to use the toilet, it rolls down like fucking boulder and shuts everything off. I share my discovery with the Dr. who says it sounds reasonable but not a long term solution so guess who’s getting another catheter. It is at this time I learn that the reason I had such discomfort with the last one was because they used a latex catheter and uh, yeah, I am fucking allergic to latex. Nurse Sara tries her best to gently insert this one, being herself a vagina owner, and knowing how brutally uncomfortable this is. She can’t get it in; Urology is called, and they will come do it. Two doctors arrive, and no matter how hard they are trying to be gentle, they don’t own a vagina, so they have no idea how ridiculously painful this whole process is. Finally it’s in, and my bladder starts to empty. Despite the number of times I managed to empty my bladder using the chair method, it’s still pretty full. They are going to do one more urine analysis and then I can go home. Andy has already left for work, and my beloved Paige and baby Kenny have agreed to come get me. They tell me I will have the catheter in for a week or so – then they will take it out and see if I can just intermittently catheterize myself on my own daily instead of having the giant pee snake invading my vagina. They will call me with an appointment. Nurse Sara comes in to show me how to take care of this set of tubes on my own and then shows me that I also get a snazzy “daytime bag” that I can strap to my leg when I want to go out and about. OOOh, a fancy pee bag accessory – IT’S A FUCKING PEE BAG – not a clutch. I laugh because I doubt that I’ll be all that concerned about the size and shape of bag when there’s a fucking gigantic garden house dangling between my legs. Sara leaves me to the business of figuring out how to dress to accommodate the gargantuan hose and bag. When Paige lets me know she’s close, I ask Sara if I can leave, and she gives me the okay…at this point I couldn’t bear another minute after listening to the dude in the next room grunt for two hours while someone else kept their finger on the call button almost the whole time I was there. I’m outtie.

Not so fast, says the Drop Dead Fred look-a-like at check out. You must check out. I tell DDF, no, I don’t, I was dismissed by the ER. Yes, yes, you do says DDF. He demands my checkout papers. I don’t have any DDF, I tell him. DDF asks if I have any papers from the ER, I say yes, and he demands I turn them over. So I slam my pee bag on his desk, and open my backpack and hand him the papers. DDF peruses them and says, um, yeah, you don’t have to check out. I grab my pee bag and leave in a huff.

I keep falling asleep on the way home, because I am exhausted. Paige and I hit Wendy’s because the last thing I ate I can’t remember. When I get home, pop a muscle relaxer, have some herbal meds, empty the pee bags and pass out in sweet sleep. When I wake up in four hours, the pee bags must again be emptied, as they fill quickly when you sleep.

I’ve since named the pee bags. Tweedle Dee and Tweedle Fucking Dumber. I carry the big one around in my backpack, the little one’s pinned to my side. There’s no getting comfortable, only being able to tolerate the positions. It still feels like having to pee all the time. Like there a rock stuck in my vagina on the end of stick. And while I am grateful for being able to sleep for more than 1 hour at a time, I still have to get up and drain them at least twice a night.

This is my new reality, and why I am so angry. Like I told my nurses, I knew something like this would be down the road, I am not a pollyfuckinganna. I just wanted those last two months, the two months when I could feel like a normal human, not a fucking cancerous blob, who will just sit in bed and wait to die. I wanted quality over quantity. This is not quality. This is a nightmarish hellscape that I am not waking up from. Yes, it could be worse, which is easy to say when you aren’t the one with the pee bags. I know it could be worse, and I am grateful that it’s not. But today when the Urology dept called for my follow-up and said my appointment to determine if they would remove the catheter would be September 14th, that was the last straw. No Riot Fest. No Whoopie Pie Festival. No more swimming. No more baths, no more hot tubs. Just fucking days of emptying and cleaning pee bags, self medicating and sleeping because there’s not much else I can do. I can’t even go to the beach because SAND. I am not happy. I am not.

So before you try and turn my frown upside down, please understand I need to be angry, I need to be able to feel sorry for myself. I need to say that cancer sucks, and it’s a horrible insidious disease, and that I have every right to be upset that my life is completely different today that it was last week. I don’t know what I did in a past life to deserve this, but when I look back on everything I’ve gone through in my life, I kinda feel I’ve been cheated a little. This will pass in a few days I know, but for now I don’t want to talk anymore about it, or pretend my world is a happy fairyland where unicorns play candyland with talking bears. I am grateful for all of the concern, and love, and caring, and well wishes, and prayers, I truly, profoundly am, but I am still coming to terms with what is reality.

And with that my friends, I am going to go have a nice shower with TD1 and TFD2. Good times. I’ll be back to my normal self eventually.


No Bueno II – Return to Oncology Hall

Calvin-gets-existential

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!!