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Posts tagged “cyst

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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Hibernation is No Excuse

I am sorry I am ignoring you, my peoples, I suck. Yesterday, it dawned on me that I am in the midst of a postchristmas depression in addition to the new stress on my body from the deatheaters, who will be discussed another day. There are a number of excuses I have made for not writing: I now have an iPad (how you iPhone people lived so long without swipe  I don’t know) so in my waking hours I do virtual jigsaw puzzles, because I am too tired or too bitchy or too depressed or just want to stare at the Christmas trees. Yes, they are still up, and I am still enjoying them so bah. I have also ignored many craft projects, reading,  laundry, showering unless I am going somewhere, and meditation. This is when I realized I am in the midst of a depressive episode. But it not the worst I have ever known, and I am probably through the worst of it. January is a cruel Month, and February is just about waiting for March to get here.

Anyway, I owe my blog  an entry about the last CT scan and subsequent dr visit. It will happen, because the deatheaters are new to the story but the gist of the ct/visit was that the the puffer is smaller now that it drains 24/7 and it is being attacked by deatheaters, which is the positive news.  Also a plus is that the tumor on my left lung vanished. On the downside, the tumor on my right lung is bigger, but with my strong faith in turmeric, positive imagery and the regular use of herbal medication, I believe we can work on that. We are now in a holding pattern – and the prognosis is status quo. No more likely to die than before so that’s a bonus. And while I piss and moan about the constant oozing from the pufferfish, and how it sucks the life out of me not just because my body is stressed by the constant inflammation, as well as whine because I cannot sleep for more than 2 hours at a time, so I sleep for like 90 minutes, get up to make a bathroom trip, medicate, and fall back to sleep for another 90 minutes, the fact is, the alternatives are much worse. But enough whining, I have access to Amazon prime and Hulu and HBO go, so I sleep through a lot of really bad horror movies. And with that I am off…be well friends , and I will look for some motivation.


And On Mondays, We Get Probed.

happy-cancer1

Hi there happy people. I hope you’re happy people. It is Friday after all. That means it’s the weekend, right? I don’t care so much about the weekend anymore since I hardly work these days, but it does mean that people are available to do things, which they typically are not during the week.

So I could tell by the number of new views on my Peckalicious facebook page that people were wondering where the most recent post is. While they share the same name, that page is for shit I make and want to try and sell. When I actually thought I could make a side income from making shit. What I learned is that people want handmade shit for like pennies, unless you claim to be Amish, or “country”neither of which apply to me. So now I just make shit to give people. And beside, having to make things for money kind of kills the joy for me. I do it because I like to; money is nice, but I like the creative process.

If you are a facebook friend, you got the condensed version of the Dr. visit on Monday. I get tired of typing it out again and again, so I usually send a group message after my visit and post a synopsis on Facebook. Sometimes it just seems like it’s redundant – things don’t change much, or there’s waiting for things to change. But before I continue, I’d like to make a request or perhaps, just an comment, to people who frequent doctor’s offices, and particularly those who are only there for a damn blood test: YOU DON’T NEED AN ENTOURAGE. Really, unless this is your first blood test ever, you don’t need to bring your whole family. Even if it is, you don’t need more than one person to hold your hand. And pay attention to the instructions at check in. Just because you didn’t listen to the helpful staff who told you what to do with your purple or yellow folder because you were talking to YOUR FUCKING ENTOURAGE, doesn’t mean that because you sat there with it for an hour and now you realize you were supposed to put it in the bin so they know you are here, that the world should stop and you should be called next. Also, to all the fucking whiners in the waiting room. You have cancer. You are here to see the Dr. Threatening to leave because your name was not called in the 10 minutes since you sat down, (with YOUR FUCKING ENTOURAGE) is gonna hurt no one but you. You should be grateful you have time to wait. I know I would personally prefer being at home on the couch with my medication, but hey, you drove here, you parked the car, and came inside, commit. I’ve rarely been to a Dr. where I have been seen on time. The nature of medicine itself does not cooperate with linear time. Bring your happy face with you. And if you are in a hurry because you made other plans (with YOUR FUCKING ENTOURAGE), then you can cancel the plans, or the reschedule that visit. You and YOUR FUCKING ENTOURAGE took up seven seats in this waiting room. I have to sit out in the hall on a bench, with a sweet grandma and her grandbaby (this is sort of a blessing because the baby is muffling your bitching and moaning). I’m not complaining. I brought a book, and my phone to listen to podcasts. There’s a damn refrigerator with drinks for those of us with cancer. Get a fucking cranberry juice and shut the fuck up. I’d like to clarify that it is usually one or two people complaining, not a large number, but they always have a FUCKING ENTOURAGE and they are always loud. You know this waiting room is small, and there is limited space, but please, make sure that you and your FUCKING ENTOURAGE spread out as much as possible. AND WHATEVER YOU DO, PLEASE MAKE SURE THAT YOU AND YOUR FUCKING ENTOURAGE STOP DEAD RANDOMLY IN FRONT OF PEOPLE WHO ARE WALKING BEHIND YOU. Here’s a tip – if you are just there for a blood test, try showing up in the morning. Early. BEFORE YOUR FUCKING ENTOURAGE GETS UP.

My appointment was at 2. That’s “the get here on time” time. The appointment is really at 2:15PM. I am feeling week and tired, but am having a lovely conversation with the sweet grandma I met who was also a patient of Dr. K, and was scheduled for 2:30. Her grandbaby kept us all amused. I had enjoyed a brownie on my way to the Dr. so I was rather mellow, which I should bring for the whiners and their FUCKING ENTOURAGES, come to think of it. I was finally called around 3:05, which was pretty good for Dr. K, because unless you are one of the first three appointments for the day, you typically wait. No med students today. Just the nurse, Anne, and the Dr. I have no fever, I am not depressed or suicidal, and my blood pressure after a few moments of meditation, is a sweet 124/83. Dr. K and Anne come in, and I tell him about the continued bleeding and my exhaustion and blood craving. I’m not having any pain. He’s super-stoked when I tell him I’ve been off the opiates since Christmas Eve. My herbal medication does that job, although I’d rather have a brownie or some tincture. Dr. K says he’s pretty sure that the pufferfish exploding and continuing to drain is a good thing at present – at least it’s not crushing anything and forcing the intrusion of tubes into my body. I think Dr. K is trying to impress upon me that my experience with tentacles is not forever over because then he starts talking about the possibility of a fistula pushing into my bladder and then requiring double nephrostomies. I remind him that it’s quality over quantity and I’m on a no-invasive-tubes mission. What’s the point of being housebound and miserable in order to extend your life a couple or three months? Better to burn out like a fucking comet. This should come as no surprise is you know me well, even if it makes you uncomfortable. There’s a huge difference between living life and existing.

Anyway, I tell him I want to go to Ireland in April, and I need to know if that’s a reasonable expectation or should I put things in motion sooner, and Dr. K says he thinks it’s reasonable and he’ll work with my treatment to help it happen. It still doesn’t mean I am getting some delicious rejuvenating blood. He says we’ll wait another month and see how the chemo pills have worked, and then I get to have another thrilling CT scan and then we’ll talk about what’s next. My next appointment is February 1st. It’s almost like the pufferfish will be pelvic groundhog, letting us know if there will be six more weeks of bleeding. It’s not even like a period, it’s so random and weird. There’ll be hours of nothing and then it’s like the tide’s coming in. He asks how many pads a day…I guess at 4, but then when I get home, I realize it’s more like 6. Oh wait, I forgot to do my “THIS IS GROSS” warning. Oh well, suck it up ponies. Anyway, we chat and he says we should probably do an exam, considering there’s a hole in my vagina that spewing internal muck and we should make sure it’s not become a disaster area. I agree as much as I hate the probing. I really do. If you ever get cancer, which I sincerely hope you don’t, wish that it’s in your toes or left pinkie, or ear. This internal examination nonsense never becomes an enjoyable part of the visit. I know that some guys think that we ladies enjoy having things in our vaginas, no matter what that might be, but no. We don’t. Especially not while at the gyno. After we have agreed, he and Anne leave so I can get undressed.

I do what I need to, and notice there has been no bleeding since I took a shower at like 10am. Odd. I hop up on the table (when will a woman doctor design a more exam friendly table? There’s nothing remotely comfortable or relaxing about it.) At least, there are no inspirational quotations on posters that you can stare at while being probed. However, if anyone at the PSH Cancer Institute powers that be are reading this, a small TV screen featuring the food network, or the ID channel, or even South Park would be far more effective in distracting me. I sit there on the edge of the table, swinging my seriously unshaven legs back and forth, when – well, hello there tidal wave of blood. At least Dr. K can now see what I am talking about. Gross. I keep waiting. I hear Dr. K on a phone somewhere and then hear him in another exam room. It seems likes it’s been a really long time that I’ve been waiting. Did he forget me? Time is always a little skewed when you are fueled by a brownie, and I am sorta ready for a nap. I don’t want to lie down, because that’s just weird, but I am nodding off. Finally, after what seems like 2 hours (it was 20 minutes) Anne comes back and asks if Dr. K came back. I say nope, so we both sit and wait and chat .Finally, Dr. K returns and we get to the business of ramming instruments of torture into my vaginal cavity. He confirms that there is still a hole in the vagina, but again, comments that this could be a positive thing, and, once again is pleased that I do not try to leap off the table in pain while he does his exam. As long as there’s no pain, that’s a good sign. He says that fistula word again, I shush him. He says that there any odor is probably just because it’s old blood. Double gross. But I’ll take it because anything is better than tentacles and pain. If I have to start wearing Depends to deal with this, I’ll take it, because ANYTHING is better than dragging a catheter around all day and having it cause you even more pain. I don’t think Dr. K or anyone can fathom what it felt like to have that fucking tube jammed in my bladder and constantly abraded by the movement of the cyst. Anyway, we wrap up the exam, I get another prescription for oxy, and sent on my way. It’s 4:10pm.

I gave a brief thought to getting Indian food for dinner, but that would mean exiting the warm car to fetch it. Nope, it’s 20 degrees. I’m not getting out of the car until I am home. As I am exiting, I see Alice, the sweet grandma, and she has still not been called back. I give her a fist bump and tell her I hope they call her soon. I was smart and used free valet parking today, even though I always tip, and stand inside while some poor soul freezes getting my car. I hop in, pleased to find that the root beer I purchased earlier is still delightfully cold. Dinner will be Arby’s. It’s on the way home and no need to exit the car. I’m exhausted. I just want medication and sleep but I still gotta pick up the faux beef sandwiches. Finally, I made it home, and the comfort of my couch. And that’s mostly where I am, except when I am in bed, or at work, or out.

Dr. K is always surprised that I continue to try and work. He said he’d be happy to say I can’t but I tell him I need those couple hours of socialization. He’s fine with that if it’s what I want. I was a little concerned that he didn’t want a CT scan right now, but then I realized, what’s the rush? If the cancer is disappearing through the hole in my vagina, that’s a good thing; if things are status quo, we already know that; and if things have gotten worse, there’s not gonna be a lot to do about it, and the knowledge isn’t going to make me feel any better. So I can wait a month. Bad news is that the scan is on the 27th, and the appointment is on the 1st. Five days of knowing what they find, without being able to see the doctor until Monday. I supposed I should be used to that though.

Well that’s all for now people. I am going to work this afternoon from 2:30 to 4:30 if Andy ever returns home with the car, since, of course, I have work and he decided that he needed to get an oil change NOW and oh, by the way, the check engine light is on and he thinks it’s the O2 sensor. That was two hours ago. So I’m gonna grab a little nappy nap and wait. Have a good weekend, and week, and life, and such. Peace!

Update: I was sitting here thinking how pretty sweet my life has been lately, no drama, bills paid, plenty of oil, etc. Then in walks Andy. There’s a cracked tire rod, blah, blah, blah and it’s going to take at least $1000 to fix what they know is wrong, and that’s not including what is the source of the engine light being on.  Car = undriveable. Fucking yay. Well, I’m not dead. That’s a plus. And we didn’t die in a fiery crash when the tire fell off, so that’s good too, I suppose.


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.


The War on Christmas Road Trip (with PICTURES!)

Wow, I realized that this last month I have sucked at actually completing a blog post and then posting it. Again, I’ve been writing them, or perhaps I should say, I start writing them, get in the flow, getting my words on, and then I start to feel nauseated and have to get the medical equipment and address it. Then, as those of you who are familiar with the medication are well aware, one of three things happen:

  1. I continue writing but by the time I get to the end, I’ve rambled on for seven pages and feel that I need to split it up into sensible chunks before I can post it. (rare)
  2. I say, gee, I just need a little nap now, and I’ll finish it in in a hour. And then two days later, I have to recover said document and save it because I never titled it, and then the computer froze. It’s still not done. (happens pretty regularly)
  3. I see something shiny or flashing on the internet, or decide I need to make some Christmas doo-dad, and then fall down a fuzzy rabbit hole in which I learn that baby reindeer start growing antlers almost immediately after being born. Oh wait, I haven’t watched https://reindeercam.com/ today. (and off I go to watch reindeer – happens all the time) (I just went to the interwebs to get the URL for reindeer cam and found out I have been eating pancakes all wrong, you should make a hole in the middle of the stack and pour syrup in there. Wow. Yes, I’m medicated)

And as you can see, the likelihood that I ever finish what I was doing becomes very small, and I promise to do it tomorrow, just like I do with letters, bills, unanswered text messages and laundry. But not today my faithful readers, I will complete this. I have sworn not to do anymore origami Christmas wreaths for my Christmas card until I write this entry and post it with the photo collages I spent hours creating this morning. (do you want an origami Christmas wreath ornament, or a Christmas card? Because I am so on that this year – send me your address). That is not to say that I have not completed some things. The house is well decorated for Christmas, although not quite finished. Fear not, the pictures of the house where Christmas threw up will eventually make their way to the blog and social media. As will the entry about what happened at the Dr. on Monday in all its gross and graphic detail, but I am here with a purpose today. So with no further delay.

Well the plan was to leave at 3am. Which was actually 5am. I cannot sleep in the car no matter how medicated I am, and no matter how tired. So Andy drove first for a while, and then I drove through the visual wasteland of Ohio and the flatness of Indiana. Andy took over and drove the rest of the way when we got to Illinois. I let him drive in cities because he thinks he’s better at it than me. It’s one of those battles I don’t care to fight. We got to the hotel earlier for check in because I forgot the time change, so we checked in at 2ish, and I finally got to nap. We ordered delicious Thai food, watched criminal minds and were asleep by 9. The hotel was very very nice, amazing beds, and pillows and quiet and right next to Lake Michigan. I would be amiss in not noting that while we were driving, I saw two hawks. I may or may not have talked about hawks and what they mean to me, but I was not pleased to see them because they always are a harbinger of change for me, and it’s never initially good. Saw a hawk, got laid off, saw a hawk, find out my cancer is back, see a hawk, overdraw my account. There’s a pattern. I know change is always ultimately good, but I still hate to see them, and this time, one of those motherfuckers flew straight at the windshield like that damn pigeon did on our 2013 Mother’s Day road trip to the beach. Except it didn’t actually hit the windshield. Anyway, I was on alert. I know that is sounds superstitious, and I typically don’t get all wound up by those things, but hawks freak me out. I can’t really explain it.

Day two started with Andy deciding to let me know he was going out to wander the city at 5am. Have fun honey. Bring me breakfast. I’m still sleeping. Off he went, and I slept and slept and then he came back by nine-ish with some lukewarm cocoa. And no breakfast, so I ate leftover curry. Then I decided to go for a swim in the hotel pool. It was a lap pool with no children in it so it was heavenly. I actually swam at least ten laps and felt amazing. I knew I would pay for this later, but hell, that’s what the medication is for. Then I even enjoyed the sauna. Since we were planning to go to the aquarium, I woke the sleeping Andy and we headed to the see the fishes. Curiously, Chicago’s aquarium and museum have odd admission prices. Like the GA admission to the aquarium is only $8, but if you want to see the sharks, and the stingrays, and the penguins and something else, it goes up to $30.95. Having seen sharks, penguins and rays, we elected to get the $8 tickets, which was the wise choice, because the penguin exhibit was under construction, the rays were closed for the winter and well, I’ve see sharks. It was a cute little aquarium without all the bells and whistles of the special features and had many penny-flattening machines. The Amazon exhibit was exceptionally humid and it started to make me feel a little sick so I was sitting down a lot during a visit. I was only able to take pictures in the very well lit places so I think I took three. Then I ordered Andy about to take more since his phone camera doesn’t suck the way mine does. We saw monkey and frogs and birds, as well as fish. I must say my favorite were all the big fish that had funny fish faces, the lumpfish, and the giant snapping turtle. And I gave every pufferfish I saw the finger and told them I hate their fucking presence everywhere.

We headed back to the hotel after buying expensive souvenirs, magnets and the photo package of the photo they take of you when you enter the aquarium. It was time to get ready for The Lawrence Arms First Annual War on Christmas show, and I needed a nap and a shower. This is where the not so good changes from the hawk comes in, and I am about to get graphic, so if that bugs you, STOP HERE. You can resume at the word RESUME. Anyway, I had to pee before I took my shower, and as you may or may not know, the pufferfish that lives inside me has been growing back to it’s original size after the last draining. It really started to cause issues the last week before leaving and all I wanted to do was have my trip to Chicago and I swore I would call the Dr. when we got back. Especially since I did not want to end up in the ER with tubes. Wednesday night, I was having some issues with being able to pee, and was worried, but that worry was gone by Thursday evening. Not only could I pee as I can when the cyst was drained, there were waves of fluid leaving my body. I was like, hell I didn’t drink that much water. When it finally stopped, I went to flush and realized is was a weird bloody mucus fluid, just like they drain out of my cyst, but then (GETTING EVEN GROSSER HERE) I also have had the gift of hemorrhoids since I was pregnant with Andy, and they occasionally burst, so I thought maybe that was it too. Whatever, I had a show to go to. I wasn’t saying anything to Andy, and was just gonna hope it was a fluke. I padded up just in case, and off we went. Whatever it was, could wait until after the show, unless I began hemorrhaging, and then we’d have to reassess the rate of blood loss to see if it could wait until after Off With Their Heads’ set. You may RESUME HERE.

So we got in the car and headed to the Double Door. We found it no problem. We should have taken Uber or public transportation, but then we FINALLY found a parking space just an ½ block away. Of course we started walking in the wrong direction and then realized that the one minute walk had turned into a ten minute walk, and I turned to my trusty GPS to get there on foot. The will call line was literally down the block. And we had to wait. I was beginning to get nervous because it was close to the time of OWTH set and I was like, we did not just drive 10 hours to miss this. We got in at the nick of time, just before they took the stage. The first person I saw was Tommy at the OWTH merch table and after an exchange of hugs and such, he told me to stand behind the table for the set, because he was going down front, and I would have a great view from where I was. And I did. And I did the best ever job of selling nothing for OWTH for their entire set. Then Tommy came back and took over, and introduced me to his friend Sarah who then because the merch girl while Tommy socialized. And I must say she did an excellent job, particularly with the complicated notebook sales recording system.

OWTH were great, it was very festive set, and as always, amazing. During the break, Ranae suddenly appeared and we too exchanged hugs and stuff and snuck away downstairs to talk during part of the Lawrence Arms set. We decided that Brendan Kelly looks like a golden retriever with his bandana around his neck and you just want to scratch him under his chin. I drank cranberry juice straight, as I am still protecting the kidney from any more tubes, and asked Ranae what hospital I should go to if I needed one. The rest of the time, I pretended to be perfectly fine. Ranae and I had a great time chatting, and hanging out, and of course I got to see Ryan, Nice Jon, Robbie and Ryan Fisher too and get hugs. I can’t believe I used to not be a hugger. They were going to go across the street after the show, and as much as I wanted to go too, I was just wiped out and more than a little nervous about the whole blood thing. And my body has a way of just shutting down when it has had enough. I get cramps in my legs, a pain in my lower abdomen, and cramps in my sides. It’s like it just says stop. And it was saying stop. So I had Andy take me home – I told him to go back and hang if he wanted to, but he worries and stayed with me. I had a medicinal mixture when I went back to the hotel and passed into a coma. At least I didn’t see anymore blood.

No more blood in the morning. I went for another swim/sauna deal, while Andy when and got breakfast – yummo. Challah bread french toast and home-fries with ham, swiss, and mushrooms. He ate many plates of eggs and potatoes with chorizo and cheese. I then took a nap and we watched Christmas specials like Rudolph’s Shiny New Year and The Year Without A Santa Claus before we got ready to go to the zoo. Chicago’s Lincoln Park Zoo is free, and has Zoo Lights. Again, my camera pictures suck so what you’ll see here is my shitty pictures. It was beautiful. And and awesome zoo with no major hills. It has tigers. And lions. They gave out cool 3d glasses that turned the lights into little elves’ heads. I wished I was medicated. Because not only were the glasses cool, so were the lights on their own. We had a great walk and the lights were amazing. Even Santa was there. Again, an ridiculous amount of money was spent of souvenirs. And we headed to the Big Bus Tour Holiday Express which is a nighttime tour of Chicago’s Christmas-y attractions. We started at the Chicago Hershey’s Chocolate World, which is not even close to the well-loved Hershey attraction. We waited and waited for the bus, as it was really late, and Andy was being a cranky baby because he ate way too much food and had a belly ache and was being a buzz-kill Finally the bus came and the bus driver was like, no you have to go get a paper ticket before you can get on, and I was like for real? We just waited for you for 40 minutes (they are supposed to be on a 10-20 minute cycle) and now you want me to walk to another stop and wait for you there? Do you see this miserable 20 something with me? Do you think I want to tell him he has to walk somewhere? So she said stay on the bus, and I’ll take you to the scanner stop. Yay! A small win. And I’m still not bleeding. Maybe things are fine.

We ride up in the top part of the bus, and enjoy the lights and what not, and decide to check out the Christkindlmart which had some beautiful things, but you could not get close to them because PEOPLE. It was a mob scene. I am not a big fan of people or crowds to begin with and this place was insane. Any food stand had a line 100 people deep. You could barely walk. Andy wanted hot apple cider and got in line for it. I managed to walk the entire market, even pausing to look at a few things, and by the time I got back to the hot apple cider stand, Andy was just being served. We took a sip or two of cider and headed back to catch the bus. We rode it to the rest of the stops, and then returned to Chocolate World, got our free hot chocolates, bought some cookies and headed back to the hotel. Again, my body was letting me know it had enough. And now the blood was back. I ate a cookie, drank a ton of water and went to bed. I wasn’t bleeding enough for it to be an emergency, but enough to be annoying.

On Saturday, I tried to get together with Sarah and Christy for breakfast or something but Sarah had already left to the airport and I wasn’t feeling very good, so we just packed up our shit (or most of it, forgetting my toothpaste and brush, all the leftover food, beers, and most importantly, the medication in the safe, at the hotel) We were going to go to the museum. Which like the aquarium has a GA price and then all the really cool exhibits are extra. First we were going to try to hit the Christkindlmart again, but when we drove by it was already a mob scene and NOT EVEN OPEN yet. Scratch that. Onto the museum. By this time, we decided we would just get out and take pictures of the cool Chinese zodiac sculptures and then get a Chicago hot dog, take a picture of outside of the museum and head home because I don’t feel my best, and well, blood. And that’s what we did. We also planned to stop to see some of Andy’s fellow Milts, Christina and Eric and their little guy Zane outside of Indianapolis. This is when I discovered that Jack in the Box exists in Indiana. Next to seeing OWTH and hanging out with Ranae, this was the best part of the trip. I was able to get and devour the unidentifiable flavors of the Jack in the Box tacos and egg rolls, bringing back California memories of looking for some place to get food after being out most of the night and heading home. Still tastes the same.

We stopped at Christina’s and were going to stay a couple of hours, but that’s when I really started to bleed heavily, so since I didn’t have enough supplies and I was afraid to sit down anywhere, we had to leave early. Andy is such a trooper and ran in Target to get pads for me; I am thinking maybe we should go to an ER, but really, I just want to get home, and if we have to drive straight through to Hershey to the ER, then that is what we’ll do. I tell Andy we need to stop at the first rest area because I need to change clothes and when we do, it’s virtually impossible to discreetly make it to the restroom to change when you’re drenched in blood. But I do, and things stay heavy for a while, and then slowly taper off. Andy and I switched driving around 11 and I drove through Ohio and into PA. When we got to PA, I started getting really tired, and would stop every 50 miles because I couldn’t keep my eyes open, but I also wanted to get home ASAP so I can decided what I need to do next. As I mentioned, I can’t sleep in the car, no matter how tired I am, so every time I stop, I end up just sitting there with my eyes wide open. Finally I woke up and Andy and had him drive the final 150 miles home. We got home around five, and the bleeding seemed to have stopped. I slept the sleep of the dead for at least 5 hours.

I’m gonna end this here, because it’s pretty long, and I can pick up with the call to the hospital when I tell the tale of the Dr. visit. No matter how much blood I lost, it was entirely worth it to have had this adventure. I can’t even put into words what it means to be able to do this stuff with Andy and make memories of good times for us. It was a fabulous time, and I would do it all over, even with the bloodshed, again because it was so fun. With that said, and it being Christmas time, do fun stuff with the people you love – buying shit doesn’t mean nearly as much as having adventures. Andy and I never really had “vacations” when he was growing up, and I regret that now – not that we didn’t go on day trips and stuff – but I wish we had taken more vacations, had more adventures. So take my advice and have as many adventures as you can. And now that I am done this entry, I can resume writing a whimsical holiday poem as is my tradition. Enjoy your evenings, lovelies, and don’t forget I still didn’t get a real puppy yet, or a miniature pony, so please let Santa know. I do have my other puppy sitting right here though, but he doesn’t like to go on walks. And I am always available for cookie tasting. Now, be off with ye…

And excuse grammar and such errors. I really don’t feel well today and I am staying medicated, so I can’t properly proof-read today.

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Free At Last!! (At Least From The Horrors of the Tubes, Anyway)

I actually got ready early this morning, because we had several things to do be we left for my appointment at Hershey – which included going to vote with Andy and having a discussion about voter suppression, since once again, illegally, the polling place had a sign that said new voters had to show ID. I don’t know whether it’s blatant disregard that that no law was ever passed, or just ignorance developed from watching too much Fox News. Whatever. Not to mention that the polling place door is always surrounded by people campaigning for local candidates, making it somewhat intimidating to enter without being assaulted. But enter we did, and refused all the little cards the lurkers tried to force upon us to help up select our candidates. Really, if you don’t know who you are voting for and why when you get to the polls, you shouldn’t be voting at all, because you are clearly uninformed. I hate the way small town voting always seems shady, but our votes were cast and we received our stickers, which is my favorite part of voting.

After voting, we then had to hit the pharmacy because I was not going anywhere near that hospital today without being armed with a full prescription of pain meds. I wish I had had something for anxiety, because while the pain of the last tube procedure was just a memory for my brain, my body was fully remembering the trauma of the last visit, and on high stress alert. Not to mention that I couldn’t eat or drink anything for several hours before this stabbing, and I was nauseated by the Tamoxifen and shaky from not eating or drinking. My brain kept trying to deny that this time would be as painful as last, but my body was having none of that. Being sedated last time when I was leaving the Vascular Radiology department, I could only remember it was down the hall from Interventional Radiology, and wandered around lost in the bowels of the hospital trying to find it. I did find my friend Joanne, who works at PSHMC, and we then wandered together until I found it. I checked in and went to the waiting cell. As is typical at PSHMC, Fox News was on. I was doing okay until they started interviewing Donald Trump, and he began spewing outright lies, and no one even challenged him. At that point, I went and stood in the hall, because Tamoxifen raises my blood pressure and that asshole was making it worse. Not to mention all the crazy supporters in the waiting area who find him appealing as a candidate. And lest I forget, the man who spent his time reading his magazines aloud, then also audibly commenting on the articles he just read. I could feel my blood pressure soaring.

Finally I was beckoned to the dungeon, er, staging area. IV insertion did not go smoothly, and my very sweet nurse called for a vein whisperer after her first two attempts did not go as planned. My left hand is now going to be a large bruise. The second nurse got the IV started in my right hand after a few harrowing minutes when it looked like that vein was going to blow too. Settled onto my bed, I actually had a pillow this time instead of a fold-up blanket like last time. I tried to lie down, but I wanted to puke, so I asked the nurse to help me sit up so I wasn’t choking. She offered me Zofran, I wanted my herbal medication, and declined, and said I would deal with it when I got home. She said, oh do you drink ginger ale and I giggled and said, yes, but I also smoke marijuana. She nodded her approval. The Dr. then came out and told me that they had discussed my tube at their morning meeting and agreed that if they ran dye through my tube and it made it to my bladder, they would pull that sucker out. I agreed completely – then found out that since that was the plan, there’s be no sedation, no pain meds and no need for the IV so carefully stuck into my hand. However they left it in, and wheeled me into the procedure room, where in 15 minutes, my 13 weeks of torment were over. It was almost painless, but not really. I couldn’t wait to get a drink and some oxy to ward off any impending pain. I was wheeled back to my waiting space and released. Now to find Andy and my mango smoothie.

Andy and I hit the road after finding each other, and headed home. I drank my smoothie and ate my pills and was still cranky because I needed to eat. I wanted wings, but the wing place didn’t have any interesting flavors, so I settled for a jr. bacon cheeseburger, and some nuggets from Wendy’s. After my angry, hungry beast was fed, things were much better. We got home without any serious pain like last time. My little friend Erin was there to great me when I got home, and after a couple minutes of chatting with her, I headed to the tower, more pills, my medicine pipe, some advil and water. Having adequately medicated, I tried to sleep. Then the pain came. I guess I didn’t take my meds at the right time to prevent the last dose from wearing off completely, and just like last time, I couldn’t move my right side for without screeching pain with every movement. It’s since toned down a little, but that’s the main reason I am blogging tonight, because I need to get another dose in before I go to bed, so that I don’t wake up crying. My kidney spasms every now and then like it’s pushing small pieces of glass through it, and that my friends, is horrific. It lasts less than a minute, but it jolts me awake. Hopefully by tomorrow morning it will be tolerable.

The pain however was what got me thinking about blogging tonight was, because I don’t know if this happens for other people, but it does for me, when I am in pain I tend to hum, and then I hear songs in my head that are relevant to my situation. For instance, the song of the evening that is replaying in my head is Off With Their Heads’ Trying to Breathe. It’s my way of self-soothing I suppose. But I seem to have certain soundtracks to my life – like last month, I often heard one of U2’s earlier songs, October, over and over in my head. November is the month of the Jesus and Mary Chain because Joey’s birthday and the day he died are both this month, and the JMC is what reminds me of our friendship. And when the depression hits, I often turn to the Smiths and Elliott Smith to highlight my misery. When I was first diagnosed with cancer and I had to make the 4:30am drive back and forth to Hershey, I listened to OWTH’s In Desolation, to and from, every day…it got me through those six weeks and far beyond. OWTH is still one of my go-to bands for catharsis, and that’s the reason I try to see them as often as I can because there’s a sense of belonging among that crowd that I am not alone in my pain, fear, and frustration. It’s healing and cleansing. In fact, if you were to ask me about specific times in my life, there would be an album or a band that I would identify it with. R.E.M got me through being dumped during my pregnancy. I made mix CDs (and now playlists) of songs for seasons – there were summer songs, and loneliness songs, and dark brooding goth mixes with Black Tape for A Blue Girl. Some people enjoy music – my music gets me through the hard times, helping me put to words what I am feeling inside, and scream it out loud on winding back roads, helping me heal. There’s even driving music, which I have to be careful with because it seems to enhance my leadfoot. Then there were the new bands I discovered and would listen to when I first got to California and had to take the 2.5 bus ride to and from work every day – Husker Du, the Replacements and the Hoodoo Gurus to name a few. And Echo and The Bunnymen’s Songs to Learn and Sing. Andy’s first show was the very first Lollapalooza when I was 8 months pregnant. Most of my friends are clueless about the bands I listen to and love, but without my music, I’d be lost. It’s not just music, it’s my way to cope. Especially while I have been dealing with this C-monster that has me in its clutches. When I got the last prognosis, I spent hours driving and crying and singing my throat raw before I could pull it together to come home. I listen to classical when I need to focus; I listen to weird rhythmic pieces by Gabrielle Roth when I need to stretch, and I had playlists for the gym when I still had the strength to go. There was music for strength training and music for the elipti-hell machine. And there are songs that I will listen to on repeat until every ounce of pain has been expunged. And while I find peace in the bands I discover and love, there’s also music that makes my ears bleed – and gets under my skin like a festering splinter that I can’t wait to be rid of. Like when we went on the dinner cruise in DC, and the music they played on the observation deck made me want to leap into the Potomac or shoot out the speakers, or both – music can indeed make me miserable. Or it can make me laugh, like the song Bunnies by Pansy Division. (Go ahead and download that one) And for those who received them as holiday gifts – there are my impressive holiday songs collection, which have had some gems on them. It’s not just music, it’s part of who I am.

Music was the reason I was willing to put off chemo for two months so I could go to shows and festivals and see the bands I love. And while I made it the shows that mattered most to me, we all know how difficult the kidneys and bladder made following through on a lot of that was. In fact, going to shows made me fight a little harder to stay healthy so I could go. And it gives me a connection with Andy, that we enjoy a lot of the same music gives us something we can do together. In fact, my Christmas present is going to Chicago for the War On Christmas shows in December. Part of my “things I still need to do list” includes seeing bands I’ve always wanted to see live, which is a pretty short list these days, but there are still a few I haven’t seen.

Well now that I spilled all of that out there, it’s time for another round of pills. I’m still having pain, but it’s getting better – I will probably need my dressing changed in the morning – the doctor said that my kidney will seal itself, but there may be some discharge for a few days. I am allowed to swim and take baths again – they said 2 days, but I’ll wait a little longer, like when the hole is actually closed, and I don’t need a bandage on my back. It’s really the tape tugging at my skin that causes the most pain – there are scars around my back where the tape tore away my skin just like it did on my thigh. And it itches. But it’s almost completely over and I am so thrilled that I can’t even stand it. I rolled around on the bed just for fun, because nothing was tugging and pulling at my skin and kidney for the first time in over two months. I could literally feel the stress slide off after I got in the car to come home. I can deal with cancer, and I know at some point these things might have to be a part of my life n the months to come, but they don’t need to be here now. I just want to be able to do things and go places now while I can, without these encumbrances. Not that I minded taking the punk rock stroller to the shows, but I’d much rather be free of the attachments. No, that’s a lie, I did mind taking it, but a girl’s gotta do what a girl’s gotta do.

So now that my pain pills are slowly making their way into my bloodstream, I am ready to head to bed so that I can get up and get things done tomorrow, at least some laundry and maybe making dinner. We’ve been eating a lot of fast food, food other people have so kindly made for us, and frozen food. I haven’t had the energy to cook, but I’m hungry for jerk chicken and mashed potatoes and corn, and I know Andy would be grateful for his mother’s cooking again. The ladies arrive from CA here in Shenandoah on Friday, and Saturday morning we are going to Shady Maple for breakfast (and for the gift shop so I can get a new toy). I am so excited to see them all and spend time with them. And I am very thrilled to see all my other friend at the benefit on Saturday, and to score some of the good food that will be there, especially the stuff Lisa’s making, because that woman can cook. Best breaded chicken ever. My only hope is that my dad doesn’t over do the wine and drag up every less that optimal decision I ever made in my life. Presently, he’s blaming my circumstances on moving to FL with my much older alcoholic and drug addicted boyfriend when I was 17. That’s a long time and a lot of therapy ago. But that’s my dad. It’s still going to be a good time.

Before I forget, I did get my panda suit. It was very hot. I sat on the porch for over an hour waving at cars, but only 4 people total ever waved back. I scared Andy, Eric and two other people walking by. People showed the panda no love. If I saw a giant panda just sitting and waving on a porch, I would have stopped the car for pictures. Then I let Andy borrow the costume for a show he was going to. The panda body no longer exists any more because he was far too tall for it, and it showed. However, panda’s head is just fine, so I’ll just toss on my new security blanket, my OWTH hoodie, and sit on the porch as punk rock panda, and see if that makes a difference. Now it’s time for bed, and more water because we have to keep the kidney in good shape. Sweetest of dreams, I’ll probably be back after everyone returns to the West coast with pictures and stories to tell. Enjoy these last few warm days. And remember to give lots of hugs and tell people you love them every chance you get. You can’t do either enough. And sorry for the rambling, it’s the medication, I swear.


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.


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.


Falling Down a Rabbit Hole

It’s Monday. I’ve lost a full week. I’m sitting up and made my own bagel for breakfast after enjoying several trips to the bathroom to pee, which since Dana is gone, is a celebration each and every time. I’m working on scheduling doctor appointments and getting up the energy to leap (that’s a fucking exaggeration – I am not leaping anywhere anytime soon,) I am happy just to move forward without falling or gagging or wretching. I puked more in the last week that I did throughout both times I did chemo. Which is a special time when you have a catheter and a nephrostemy, because you may not know, all that shits connected in bizarre ways, and that nephrostemy tube in my back moves in and out as my kidney moves, so when your stomach is twisted up and hurling all that ice water back you just drank back into the sink, it’s also trying to simultaneously push out the catheter and the nephrostemy tube, which being sewn into your kidney and back is being torn out unless you put your hand on it to hold it still. This feat, called contortionism, requires that you twist your right arm completely around in your socket to put your palm on the bandage. This leaves your left arm available for all of the following: keeping you from slamming your face into the sink or holding your stomach, or covering your mouth if you are on your way to puke again all while making sure you don’t step on Dana or get it caught on something. Fucking phenomenal. Then you can try to brush your teeth and hope it doesn’t spawn a new round of hurling. This is followed by return to bed, where you freeze, sweat, freeze and then not be able to figure out of if you’re freezing or on fire. Only ginger beer brings a smidgen of relief. I didn’t even want to sit up long enough to medicate with my fine herbal medication.

So here it is Monday. I’ll eventually write more. For now, I’m sorry if I missed your birthday, or ignored your text, or message or didn’t respond with appropriate enthusiasm to something you said or did, I’m sorry. I went to see my brother and his wife and spend the whole time puking in their bathroom and spreading disease. Today is the first time I even opened the laptop in five days. I’ve spent more of the last week crying and wishing I could just die than I have the last 10 years. And now I’m about to make an appointment with palliative care, the call I never even thought I’d be making.

That said, OWTH was fucking amazing, as they always are, as was spending time with the Erica, and Denise and every one else. Ryan, I hope I can get a bunny shirt on Friday at the D4 show. I’m going to stop now, because I realized I am purposefully avoiding making this phone call. And at some point, I’m gonna need to shower and get in the car and get some sun on my face. Be well. Love each other, and get all the hugs you can. Even if it spreads plague.