It’s hard to believe that it’s barely over a week since I saw the oncologist. Last Monday, I was pretty happy, normal person, albeit with a massive pufferfish exploding to new sizes in my pelvic cavity. And now my world is fucking upside down and I am angry, hurting, scared and lost. So I caution you now, this mostly fueled by the anger I have for this fucking disease and is going to be graphic, and will likely include overuse of the word “fuck,” but at this point, I don’t even fucking care. You might. I don’t. You’re not the one with the giant pee penis rammed into their vagina like a rolling pin, walking around with pee bags attached front and back because your body fucking betrayed you more than you thought it could. I am.
So yeah, there’s humor in here, but only because being fucking bitter makes me funnier. Let’s tell the story. We all know that the whore of a pufferfish is still growing in my pouch of Douglas. We all know I wanted just two more months of no treatment so I could have some fun before I got really sick again. I was dealing with the fact that the stupid c-monster wiggled around in there, sometimes blocking my bladder, sometimes causing me real pain, but things were working for the most part. I was dealing with the almost hourly trips the bathroom at night, the lack of sleep, the constant urge to pee at night. I could live with it, as annoying as it was. Until the ability to pass the pee stopped on Wednesday night. And I am going to get even more graphic here because what the fuck, I have to live it, so maybe this will help someone else who deals with something like it. On Wednesday night, the 12:30 trip to pee ended in a couple drops and about 40 minutes of cramping, cursing, writhing, crying, more cursing, wriggling, standing up and sitting down, and frustration. Sleep five minutes. Back to the bathroom, repeat. All fucking night. For those of you who have given birth to spawn vaginally, imagine that moment when you want to push and they tell you to wait, and there’s all that fucking pressure and you’re just like when can I push this monster out of my uterus??? Well that was what this feels like. I’d been dealing with a milder version of it for months, but at least then it ended in finally being able to pee. Not this time. The sun came up and I got ready for work. Usually I had no problems during the day, because the movement of being up and around would move the cyst away from whatever it was blocking, and I could be normal during the day. Not this time. All morning, nothing. And it is as uncomfortable as anything you could imagine. I google my symptoms and web md tells me I should probably go to the ER. We agree. And off I go.
Since I won’t see a Dr. anywhere but in Hershey, I make the hourish drive there. I’m doing great until I hit Hersheypark. Then my bladder, deciding it had had enough fun with me for the day, bursts like a fucking tsunami in the car without warning. And what do you do when you are pissing yourself at 60mph, and there’s nowhere to stop, and what would you do anyway, if you could, stand on the side of the road and drip? AND it’s raining. AND the get gas light just came on. I did what any normal person would do, I drove to the ER and parked the car and panicked. No blankets, no towels, not extra clothes, soaked in piss. In the rain. 200 feet from the ER. I can’t go get dry clothes at home because I would need to get gas and I can’t get gas because I’d have to get out of the car. I can’t just run over to K-Mart and get some dry things because I am soaked in pee. Finally, I try calling some friends to see if they can run to my house, get me some dry clothes and bring them to me. My friend Lori agrees to help me out and while I am waiting, I decide that I cannot sit in the car in this state for over an hour. I call the ER, and ask them if they could send someone out to get me with a wheelchair or something. They do. And I cover the driver seat with shop towels to try and soak up the mess.
The ER was awesome. They got me right to a room right away, and got me out of my pee-pee pants. I have to say that the ER staff was downright amazing. Now, my body has agreed to let me pee a bit from time to time. At first we’re just going to make sure there’s no infections or what not. I point out that I know it’s the bloody pufferfish’s fault. They do an ultrasound on my bladder and kidneys. My bladder is full. Even though I just successfully completed the attempt to urinate not two minutes before. This is not good. My kidneys look nice, but the right one is showing signs of distress, because the beast in my belly is putting a kink in the right ureter and urine cannot pass from the kidney to my bladder as efficiently. While all the poking and probing is happening, Lori, my saviour, arrived with dry clothes, and my bff Kelly came to visit and brought me a phone charger. You see there’s wireless in the ER, but no cell service. So I need to put my shit on blast on Facebook (which I’d probably do anyway) to try to get messages to the people I would usually text. And for that, I need my phone to be charged. It was like having two guardian angels in the room. All the while they were there, we’re kind of just waiting. I am getting scolded by the wonderful nurses for escaping the monitors they have on me and leaving my room. We set the bed alarm off trying to figure out how to make the back go up. We ring the nurse just to ask her if our pizza is here yet. We make their jobs fun.
Finally, the resident surgeon from urology comes in. We talk about how I was going to have a consult on Tuesday about a stent in the right ureter. I am still not sure how that is going to help the bladder issue, but I am not the medical professional here. He’s hot, not super hot, but definitely a cutie, and probably barely older than my son. Oh good, and now he has to examine me. Now, I know a lot of people say that they don’t care about how they look when they’re sick and the doctor is examining them, but I am not one of them. I am completely self conscious about being obese, with radiation scarring, the myriad of scars from laparoscopies, and my sad sad vagina. I don’t really want to look at my vagina myself, so I feel bad when others have to. And that’s sad, because the vagina and I had a lot of good times together, but that was over 20 years ago, and now, it’s just another body part to betray me. Cute Dr. Brian gives me some options – get a catheter and come back Tuesday for the stent, consider just getting a nephrostemy on the right kidney today, or next week, do nothing, or just get a catheter. I say we should just try the stent, and then see what happens. He goes off to consult the attending, I mentally try to remember his full name for my friend, Ashley, who needs a rich doctor husband.
In the meantime, Kelly and Lori have to leave…it’s becoming late and it doesn’t look like I am going anywhere. Nurse Kristen tells me they are just waiting on urology. Dr. Brian comes back and says, “Hey, I forgot one option, we could admit you and do the stent in the morning!” I like that option. I’m getting a catheter anyway because they will need it for surgery, and Dr. Brian initials my right belly with his purple sharpie so they don’t screw up and put the stent on the wrong side and he’s gone until the morning. Nurse Kristen brings in some helpers to do my catheter, a nice young lady, and another cute male nurse. Oh fuck yeah, bring on the vagina/body image shame round two. Kristen tried to put in the catheter, but it won’t go in, the male nurse is just hanging back and Kristen and the other female nurse go back and forth, trying to jam this thing inside and it’s not going. Finally, they ask the male nurse to do it. He manages to get it in the urethra on the first try, and I breathe a huge sigh of relief that that inhumane torture is over. Or is it? Then they start an IV. The first bag is fine, until the vein blows up and now we are on to the other arm. All this time my blood pressure is through the roof because I am in pain, terrified, and don’t want a hole in my kidney. I break down once with nurse Kristen, and once again when Dr. Brian comes back to check in about tomorrow’s surgery. Kristen puts the IV bag on a hook in the ceiling so I can no longer get out of the room. I am trapped until I am admitted. Five minutes later they come to take me to a room; then immediately cancel it, because they now can’t take me to that room. I remain in the ER.
I have to say that Kristen was awesome when I was crying and sobbing about how this is so unfair, that I have plans for the next two months and how this was not supposed to happen and then cracked up when I said that I didn’t even get any of the good side effects of cancer like losing weight. Not me, my appetite is just fine. Then she said that patients like me are the reason she is a nurse, and that she was grateful to me because sometimes she forgets why she does what she does, to be there to comfort people when they are scared. She said she wished all her patients were like me, and she just held my hand. I don’t often say things like this, because I’m not gonna lie, I have some unresolved shit with my dead mother, but in that moment, it felt like my mom was there trying to make me believe it was going to be OK, because my mom was a nurse too. I was so grateful to Kristen that night, and even more so when she tried to find me jello and could only come up with two vanilla ice cream cups which became that night’s dinner. (I also had a turkey sandwich, later).
Pause here for a breaking funny story:
Andy comes in after his shower, and I tell him that Urology won’t even see me until September 14th, which means I can’t go to Riot Fest or the Whoopie Pie Festival, because there’s no way I can be up and about with the giant pee hose stuck in me for a drive to Chicago, as I am only comfortable standing or lying down, he does what Andy does best – he offers this solution:
“We could get a u haul and attach it to the car and throw you in it on your back, and punch some holes in the side so you could breathe back there or maybe get you an oxygen tank.”
How can a mother not be incredibly proud of such resourcefulness?
Back to the ER now. So the evening wears on – I am being admitted but who knows when? I am now forbidden to eat or drink after midnight as I will be having general anesthesia for the stent procedure. I suck down all the water I can before I become gremlin-like. They pull my IV off the ceiling and put it on an electric pump. I get a new IV in the opposite are because the other one is swollen like a bad molar. Around 2am, I am being moved to a new room. It’s all the way at the end of the hall of a new section of the ER that I have never been in before. It’s dark, and it looks like the holding cell for psych patients at our local ER. Not the psych hold thing again I hope. But in comes Nurse Dan. Again, a handsome young man who will probably take a look at my hideous nether regions. More anxiety. The way they have my IV inserted in my arm, every time I move I set off the alarm on the pump and Dan has to come running. He kindly asks me if there’s any possibility of being pregnant. I snort, and say nope, no uterus. He asks me my favorite question “when was your last period?” I proudly state 2011. When I answer my fifteenth interrogation of the night, I try to sleep. Only to be woken by some maniacal woman down the hall screaming at 5:45 am that it’s her health choices and she’ll make them and then screaming for Dan to get in there. Poor Dan.
Finally cute Dr. Brian and his attending and some other medical minions come to see me before surgery; I tell them that I thought it over, and if they cannot place the stent then do what they have to make my kidney well, and if that means nephrostemy, then that’s what it is. They are glad to hear this. And I am whisked off to surgery. When I wake up in recovery I demand jello, and discover they could not place the stent. Nephrostemy it is. That will come later. That one is an awesome “twilight” procedure, which means my ass will be awake. Oh fucking yay. Fortunately, that does mean I can eat jello. And drink water. No food, but at least there’s jello.
In between procedure one and two, I am taken to the second stage recovery from same day surgery. While I am there, the kindly nurse gives me some IV dilaudid/fentynal to help my pain. It brings me joy. Then two minions from gynecological oncology come by to see me, and tell me Dr. K is out of town, but they will see his associate this afternoon, and she will probably come over this afternoon. When they tell me who that associate is, from my drug fueled fog, I become lucid enough to tell them “don’t bring that bitch here, I have enough stress going on without her lack of bedside manner to make it worse.” The two minions stared at the sudden transformation from my happy cloudy self, to the alert demon before them now. I tell them she tried the put a psych hold on me the last time I saw her and I don’t want her near me in my present state. I will wait til Dr. K returns. I thank them for their time and they leave, and that is the last I hear from gynecological oncology during my stay.
Around 3pm, I head to radiology for the nephrostemy. They give me some meds to relax me, and some local anesthesia in my back. Neither eliminates the stress of what’s about to happen, the pain or the anxiety. I am lying face down on the table while they drill in my back to get to my kidney. After a few false starts, they hit the bonanza, simultaneously finding the only spot in my back that is not anesthetized Screaming commences as they try to get the pain under control; the pain subsides, but I am shaking so hard from the pain I can’t keep still. Somehow they manage to get the tube in and I am eventually returned to recovery. More pain meds follow.
Andy and Tom and my friend Ashley who left me to work for the Governor’s Office all come to visit me. I finally have a phone and a phone number and Erica and Paige call me to talk to me and it between my visitors and callers I feel pretty good and have not had any time to focus on the fact that in less than 24 hours, I have gone from happy-go-lucky cancer girl, to girl-with-a-tube-in-her-kidney-with-a-fucking-giant-cyst-that-is-causing-complications-forever. After everyone leaves, I nibble the snacks Andy and Tom brought and enjoy the flowers that Ashley graciously shared with me. I watch TV. I find that new pee bag became unplugged from its hose and soaked me and the bed. We wash, change and I get back into bed. More pain meds. Dr. R from urology comes by to say he’d like to remove the catheter as he doesn’t want me to have to go home with it. He says they will take it out at 1 am, and if all goes well, I’ll go home in the morning. I get some dinner, a delicious meatloaf and mashed potatoes and fresh green beans. No jello, but a delightful lemon sherbet. When 1 am rolls around, they finally remove the catheter from me. Liberation. I can finally get out of bed, and discover that my bag leaked again. I am not thrilled. Then I discover when the nurse’s aide pinned the bag to my gown the last time she changed it, she put the pin directly through the bag, and not where the pin can safely go. Now we need a new bag. We get things in order, I get to use the bathroom and actually tinkle on my own in one of those awesome “hats” and I try to get comfortable enough to sleep. I now have the IV in the back of my hand (location 3) it’s hard to find a position in which I am not kinking something up or cutting something off or being speared in the kidney by a hose. It’s a fucking circus.
Nancy, the nurse’s assistant or patient care aide I think is what she’s called, is a talker. I had her care for me back in December when I had the laparoscopy. One son is a genius, and is an aerospace engineer with no common sense, who now wants to be a lawyer, and her other son, well he’s just normal. Her husband had his arm torn off and reattached and when he’s grumpy, he makes her grumpy. She has a migraine but what can you do, you have to come for work. She cannot get over the beauty of the sunflowers from Ashley’s yard. She’s never seen anything like them. She’s loud and funny and talks non-stop, which isn’t helping with the sleep. I tell her I would like her to take the flowers when she leaves, and enjoy them, and she is overjoyed and begins to tell me how she is going to dry them and get the seeds so she can plant them in her garden next year. I finally fall asleep for an hour or so, and then the early rounds start – the urology minions first, then the radiology team. I am free to go, once I can get Andy to answer his phone. Andy also has to be here to learn how to clean my tube daily and to change the dressing – they offered to show me how to do it, but um, yeah, it’s on my BACK, and I am not an octopus with multiple arms nor am I an owl who can turn my head to see my back. I eat my breakfast and wait. I put the clothes on that Andy sent down with Lori. His picks were from the “these clothes are being thrown away” pile, so I put on the shorts with no elastic and decide to wear the shirt I came in with instead of the too small one Andy packed. Finally, sleepy head gets there and we learn wound care and off we go.
I get home, feel pretty good for having an hole in my back. I sleep most of the day away, until 11pm, when the no peeing thing starts all over again. Long story short, it was a horrible horrible night. I tell Andy I need to go to the ER, and I pack extra clothes and a seat cover in case of accidents and off we go. About ½ way there, my bladder lets go with no warning. Good call on the seat cover. I tell Andy to take the back way to Hershey because there’s a portapotty at one of the trail entrances on the state game lands. We get there and to my surprise, it’s been upgraded to a real national park bathroom. As gross as a portapotty but larger. I change and we resume our journey. Unfortunately I also have another bladder eruption as we are turning into the driveway for the ER. How can there be so much pee! Andy has to go get a wheelchair and bring me in that way again.
You would think the fun was almost over here wouldn’t you??? I would. I have to give an urine sample. I try to do it in the bathroom, and squeeze out a little. I go back to the exam room, and guess what? Bladder eruption, but this time I am on one of those pads, so it’s all good. While waiting for urology and the er docs to come by I discover that I can pee, but only if I am sitting on a fucking diaper on a flat chair, because it pushes the cyst back up into my body and lets the urethra do its thing. When I try to use the toilet, it rolls down like fucking boulder and shuts everything off. I share my discovery with the Dr. who says it sounds reasonable but not a long term solution so guess who’s getting another catheter. It is at this time I learn that the reason I had such discomfort with the last one was because they used a latex catheter and uh, yeah, I am fucking allergic to latex. Nurse Sara tries her best to gently insert this one, being herself a vagina owner, and knowing how brutally uncomfortable this is. She can’t get it in; Urology is called, and they will come do it. Two doctors arrive, and no matter how hard they are trying to be gentle, they don’t own a vagina, so they have no idea how ridiculously painful this whole process is. Finally it’s in, and my bladder starts to empty. Despite the number of times I managed to empty my bladder using the chair method, it’s still pretty full. They are going to do one more urine analysis and then I can go home. Andy has already left for work, and my beloved Paige and baby Kenny have agreed to come get me. They tell me I will have the catheter in for a week or so – then they will take it out and see if I can just intermittently catheterize myself on my own daily instead of having the giant pee snake invading my vagina. They will call me with an appointment. Nurse Sara comes in to show me how to take care of this set of tubes on my own and then shows me that I also get a snazzy “daytime bag” that I can strap to my leg when I want to go out and about. OOOh, a fancy pee bag accessory – IT’S A FUCKING PEE BAG – not a clutch. I laugh because I doubt that I’ll be all that concerned about the size and shape of bag when there’s a fucking gigantic garden house dangling between my legs. Sara leaves me to the business of figuring out how to dress to accommodate the gargantuan hose and bag. When Paige lets me know she’s close, I ask Sara if I can leave, and she gives me the okay…at this point I couldn’t bear another minute after listening to the dude in the next room grunt for two hours while someone else kept their finger on the call button almost the whole time I was there. I’m outtie.
Not so fast, says the Drop Dead Fred look-a-like at check out. You must check out. I tell DDF, no, I don’t, I was dismissed by the ER. Yes, yes, you do says DDF. He demands my checkout papers. I don’t have any DDF, I tell him. DDF asks if I have any papers from the ER, I say yes, and he demands I turn them over. So I slam my pee bag on his desk, and open my backpack and hand him the papers. DDF peruses them and says, um, yeah, you don’t have to check out. I grab my pee bag and leave in a huff.
I keep falling asleep on the way home, because I am exhausted. Paige and I hit Wendy’s because the last thing I ate I can’t remember. When I get home, pop a muscle relaxer, have some herbal meds, empty the pee bags and pass out in sweet sleep. When I wake up in four hours, the pee bags must again be emptied, as they fill quickly when you sleep.
I’ve since named the pee bags. Tweedle Dee and Tweedle Fucking Dumber. I carry the big one around in my backpack, the little one’s pinned to my side. There’s no getting comfortable, only being able to tolerate the positions. It still feels like having to pee all the time. Like there a rock stuck in my vagina on the end of stick. And while I am grateful for being able to sleep for more than 1 hour at a time, I still have to get up and drain them at least twice a night.
This is my new reality, and why I am so angry. Like I told my nurses, I knew something like this would be down the road, I am not a pollyfuckinganna. I just wanted those last two months, the two months when I could feel like a normal human, not a fucking cancerous blob, who will just sit in bed and wait to die. I wanted quality over quantity. This is not quality. This is a nightmarish hellscape that I am not waking up from. Yes, it could be worse, which is easy to say when you aren’t the one with the pee bags. I know it could be worse, and I am grateful that it’s not. But today when the Urology dept called for my follow-up and said my appointment to determine if they would remove the catheter would be September 14th, that was the last straw. No Riot Fest. No Whoopie Pie Festival. No more swimming. No more baths, no more hot tubs. Just fucking days of emptying and cleaning pee bags, self medicating and sleeping because there’s not much else I can do. I can’t even go to the beach because SAND. I am not happy. I am not.
So before you try and turn my frown upside down, please understand I need to be angry, I need to be able to feel sorry for myself. I need to say that cancer sucks, and it’s a horrible insidious disease, and that I have every right to be upset that my life is completely different today that it was last week. I don’t know what I did in a past life to deserve this, but when I look back on everything I’ve gone through in my life, I kinda feel I’ve been cheated a little. This will pass in a few days I know, but for now I don’t want to talk anymore about it, or pretend my world is a happy fairyland where unicorns play candyland with talking bears. I am grateful for all of the concern, and love, and caring, and well wishes, and prayers, I truly, profoundly am, but I am still coming to terms with what is reality.
And with that my friends, I am going to go have a nice shower with TD1 and TFD2. Good times. I’ll be back to my normal self eventually.
26 August 15 | Categories: c-monster, Philosophizings, Profound Insights, Random Rambling | Tags: annoyances, anxiety, cancer, diagnosis, disease, dying, endometrial cancer, fear, flying monkeys, friends, nephrostemy, nurses, pain, procedure, treatment, uterine cancer, uterus | 3 Comments
If you woke up to birds singing and cuddles and happiness, click that X in the top right corner and get the fuck out of here now. I’ll give you a few seconds to escape.
Still here? Well I am not responsible for how you feel all day if you read this. I’m giving you fair warning.
Okay, fine, the choice is yours, but you will be sorry. I am, and I am writing the shit.
I started having panic attacks yesterday. Serious sobbing, full on snot slinging, not enough tissues in this fucking box, I can’t catch my breath panic attacks. I am still having them, on a less severe scale than last night, but isn’t that how horror works? The most terrifying things live in the dark and no amount of light, sunlight, electric, candle, is gonna take the terror out of it.
I am still sick. I want to get the fuck out of this house today, and just go somewhere. Anywhere. No, not anywhere. An ocean – okay, Pacific ocean where my tears can get sucked into the gigantic vastness that oceans are. It seems like it’s been months since I got this news. It’s only five weeks, but it seems like forever. And all at once it seem like it all happened so fast. And here I sit again, with a fucking cancer garden dying deep inside of me. (That’s right you nasty poisonous bastard, you’re dying inside me, because you have no right to be there) It’s so very different this time – last time I was all like, okay stupid cancer, you will be gone in six months. The second time, you’re not so cocky. I mean, I was supposed to have made it past the recurrence window. This little monster sprouted and started taking over in a two month window. I know what my stage is, I know what my odds are, I know that it is definitely possible to win again, but it’s a 1000x more scary the second time. And a second time where they can’t just do in and cut it out like last time. I have to live with it inside, knowing that the only way it’s going anywhere is if the combination of chemo, positive energy and visualization of it vanishing make it go away. Stupid cancer. It takes so much more than your health.
Yeah, I am strong, and brave and have the guts to take this on again. But I am also a tearful mess who is so scared I am not gonna be around to see the way life is supposed to play out. What if I am not to see Andy get married? To see my grandbabies? To see my niece graduate or my nephews get married? I am not afraid of dying. I am afraid of what I’ll miss. What I thought was in my future and what might be so unfairly snatched away from me now. Oh sure, I know you’re thinking, well miss fucking sunshine, that’s not a very positive attitude! You’re right, it’s not, but it’s a very real one. It’s whats’ gnawing at the back of my mind 24 hours a day. Most people are afraid of dying – I’m not. I’m afraid of leaving. I know I will always be connected to the people in my life now, we’re all energy, we all are connected, but I am not done with this life yet. I have plans. I need to retire in Bali, I need to join the Peace Corps, I need to make a half-assed attempt at surfing, I have several more tattoos planned, I need to drive cross country and couch surf a few months on the west coast. I still want to get a PhD, and teach. I am not pleased that my plans are compromised by something completely out of my control. And in my mind, I rehash every doctor visit, every test result, every procedure and I wonder why the fuck I can’t win the lotto, but cancer II? I win that. How could it just show up like that? What did I do wrong? And believe me, I look back over my life, at every less that stellar choice or thought I had over the last several decades, and wonder what I am being punished for? It seems like every questionable thing I have ever done is being returned to me in the form of a nasty little parasite that is eating me up from the inside.
I didn’t even think it was possible for a human body to hold so much snot. Where does it come from? I am so scared this time. I have never been this scared. I feel like a caged animal. The chemo sick is so much harder this time – five days later and I am still tasting metal and not sure whether or not food is going to stay down. I am out of effexor – this is probably part of my non-stop panic attacks, I know I have a prescription bottle in this house somewhere that’s half full, but I can’t bend over to look for it, because I feel like hurling. Every joint in my body hurts, and motrin, tylenol and percocet are like a roulette wheel to see if one will actually help. I can’t get the weird chemo smell out of my nose, no matter how many bazillion times I blow it. I think my blood is part ginger now. It’s the only thing that keeps me from spending my day huddled over the bathroom sink. I lie down one minute and feel fine, and then in five minutes, my stomach is cramped up so much, that I want to unhinge my jaw and tear my stomach out. And, for comic relief, how about a post-chemo fart? Toxic clouds are less vile. Dick Cheney is less vile. As if you aren’t sick enough already, your body attempts to suffocate you in a noxious cloud at random points throughout the day.
At least the crying has slowed down. Blood tests tomorrow. Woo hoo. And I have two more weeks before I have to go through this nastiness again. I really feel for that 17 year old girl who wants to refuse her chemo – how is it more compassionate to put her through this when it’s not what she wants. I’ve already had the conversation about quality of life vs. quantity with Andy and my brothers – if it ever gets to that point, I’m cashing in my retirement, buying a surfboard, renting a car and driving to California, buying as many edibles as I can eat without freaking out in paranoia, paddling out and waiting for a great white to eat me after it mistakes me for an elephant seal. I am not dying in a hospital, all weak and sickly, it’s gonna be on my terms. Morbid, yes, but when have I truly not been? Really, I continue to watch Meet The Press, and I know how that’s gonna end every week, and yet I go back.
So next time you want to tell me how brave I am, or how strong, just remember that I am also a very scared and tearful little girl, wishing someone would save me from this monster. Facing this a second time is not about a fight, it’s about getting up everyday and doing what I have to keep from being paralyzed with fear. When I smile, it’s because I can’t rub my nose anymore or the skin is going to come off. When I make jokes, it’s because I’m scared and I need to find a way to cope. I’m gonna keep coping – I have to – it’s not time to give up. I’m not a survivor – that’s a fucking stupid word. I’m a person who has a fucking obstacle ahead – I may not overcome it, but I’m still gonna try. I’m also smart enough to know if at some point I have X years or months left, I’m not gonna waste that precious time trying to give me 10 extra sickly days, when I can have 5 days of fun. Look out Disneyland if that happens. Or Ireland. Or Bali. Or all three, and Peru.
You were warned to not read this. If you’re crying or horrified, that’s on you, not me. This is my blog. I have to face this shit down daily, and this is my process. This is how I sort through the rapid firing shit in my head that just won’t stop. You only have to read this once, and never again. I’ll be the one having a breakdown during Fairly Oddparents or Iron Man 3. I can’t promise that I won’t be maudlin or dramatic in the future either, but I can promise that I’ll do what I need to do to get through today, and tomorrow. Like my friend Debbie reminded me, these are the real feelings, these are what people with monsters inside them really do feel, and it’s ok. OMG, where is this fucking snot coming from???? It has to stop sometime!!
So that’s that. I’m gonna try to slog down another ginger tea. And check to see if my prescriptions are ready. And maybe take a drive. It’s a beautiful gloomy day out there, and if I can unswell my eyes, maybe I’ll go hang out among the dead for a few hours with my camera. Or do laundry. The mundane shit goes on, even when you’re having a meltdown.
Enjoy your Sunday, mes jolis canards aperçus! (use your google translate if you must know)
PS. To all of you wonderful friends, who call/text/message me to see if I need anything, thank you. Mostly I don’t need anything – I don’t really eat much lately but these are things that I always can use: Fresh turmeric root, Ginger-Honey Crystals, Reed’s Ginger Brew – Regular, Premium, or especially, Extra Ginger, Ginger Ice Cream, Anti-Viral Tissues, and bottled water – but not Arcadia or whatever the store brand at Boyer’s is – I don’t care what people say, water has different tastes depending on where it comes from. And sesame crackers. My food tastes are really different this time, and what I am hungry for can change hour to hour. If you are worried about Andy starving, don’t be, but if you insist on feeding him, there’s nothing the boy won’t eat except mushrooms. Well, he’ll even eat certain types of those, but he also gets random drug tests at work, so no thank you.
11 January 15 | Categories: c-monster, Philosophizings, Profound Insights, Random Rambling | Tags: anxiety, blackness, blood, cancer, chemo, chemotherapy, cyst, death, depression, diagnosis, disease, doctors, dying, endometrial cancer, family, fear, flying monkeys, food, ginger, hope, insight, malignancy, ocean, pain, panic, plans, procedure, sick, surgery, survival, toast, treatment, turmeric, uterine cancer | 3 Comments
Yeah, it was that kind of day. The kind of day you won’t forget and you hope will never come again. It’s still all very surreal, even though I have a folder with hard copies of all that went on and I can sign into the computer and see with my own eyes what I don’t really want to know. Stupid internet. S tupid body. Stupid cancer. You all suck.
I actually was early for my appointment today, even though I didn’t get out of the house as planned this morning. I skipped a coffee because I didn’t want to jack up my blood pressure which I anticipated as already being high due to anxiety. Surprisingly, blood pressure was perfectly normal. Better than ever, and I didn’t even take any pain meds this morning And I only gained a pound and a half in two weeks, which must have mostly come about last night when I was stuffing chocolate into my mouth with pretzels in order to create chocolate covered pretzels and then stuffing more feelings with a bag of sweet potato tortilla chips Yes, I wasn’t really hungry, yes, it made me sick, but the food just kept being shoved into my chomping jaws. Just like after my doctor’s appointment today when I tried to quell my emotional upheaval with taco bell and a banana milkshake at Sonic. As if it matters what I ate today, because tomorrow is chemo and I won’t want food for at least 4 or 5 days.
Okay, okay, I’ll cut to the chase. They didn’t have my MRI results posted last night or today. Dr. K came in to see me by himself, even though I heard the chattering minions whispering outside my exam room door. Not the best indicator. He looked at my MRI images on line and said he really didn’t see too much different from the last CT scan, and again went over the treatment options I had. I asked a few more questions this time, being that I was less in shock than last time – until he started talking about options. My beastly cancer-garden cyst is in a place that should he operate to remove it would cost me both my bladder and my rectum, because the pufferfish and friends are in close proximity to both and somewhat connected and that means they have to take anything that is possibly harboring mutated cells in the neighborhood. Fucking cancer. I don’t really need to elaborate on what the end result of that would look like, because I am not even entertaining that option. Even if he did surgery, there’s no guarantee that it would be a success, for a plethora of reasons including the fact that it would just delay chemo until my body healed, which would cost me time, and it would involve a very long healing time, and would be risky and very hard for me to recover from. Not to mention that it would change the quality of my life forever. He again explained why there’s not going to be any radiation, and discussed chemo versus anti-estrogen therapy. He remains positive that the ol’ c-monster will respond well to chemo, but really what else can you do but hope for the best? So after much sighing, he gave me a big hug, told me Anne would be in with my schedule and paperwork, and said he’d see me in three weeks. No minions today – they appeared to be a fresh batch because it was a new semester and I am sure he didn’t want to traumatize them too much on their first day in gynecological oncology.
Anne came in and more hugs ensued. And crying. And laughing. And she gave me my schedule and reminded me to pick up the good ol’ decadron and compazine so I would be prepared for poisoning tomorrow. She kindly color coded my schedule for me so I know when I have chemo, and dr. appointments and blood tests. Blood tests are going to be weekly this time because the radiation from last time has compromised my bone marrow and they want to make sure my blood counts stay where they should be. I also signed a release for blood transfusions. I got kinda excited about that, because fresh blood is a pretty good thing, I like when I get blood, it makes me all energized. We talked about herbal medicine for side effects and to compliment my treatment and I’m going to explore that with her okay. No zofran this time, just compazine to start for the nausea. She’s a great coach, and told me I did this once and I could do it again – the difference being this time the monster is still inside, and last time they cut the shit right out. And last time they took organs I was not longer using anyway. This time, I’d be missing parts I’m kinda fond of. Which again, not considering as an option. I’ll be seeing her pretty regularly at the ol’ Cancer Institute, as I go through this cycle. I also made sure I got my note saying that chemo would be poisoning me and I would be missing work. And a lovely catalog of hats with fake hair attached as if I am going to be seen sporting fake hair – if I want fake hair, I’ll draw it on with my sharpies. And off I went, to get my first of a bazillion blood draws. I did get a penguin sticker for my bravery during the blood draw. I am going to keep my stickers on my folder. My new rule is no sticker, no blood.
And in a repeat of two weeks ago, me and the phone returned to the car, and did our texting. And crying. Much shorter this time. I just wanted to get home, so I ran in to Karn’s and located both the delicious Halos and some Ginger Brew, so I can get through the next week. Then I comforted myself with the aforementioned taco bell and banana milkshake. It didn’t really work, but I did see my beloved pony-pony and that made me smile. He was hiding in the barn trying to stay out of the freezing wind. Another day out of the glue factory.
I was going to drive around for a while but I decided to just go home and curl up in bed and pretend none of this was happening. Of course, I had to check my online medical record when I got home, so I could add to the joy of this day by reading the MRI report. Apparently, pufferfish is now sporting two tumors, instead of one. Two. Two bloodsucking leech tumors. Two. The second one is 8cm long. The first is 10cm. So they aren’t exactly petite. Doesn’t change the treatment, but causes additional emotional damage. More crying, more curling up in a ball, more cursing my luck and trying to figure out what I did in a past life to be poor, fat, and get cancer in this one. Of course, as you can read, I’ve rebounded somewhat because I am writing about it. Cancer fact – every tumor after your first one is not only considered to be the same type of cancer as your first one, but also considered to be the same stage as the first, so they are all IIIB. Lucky lucky me. If only cancer was the powerball – I wouldn’t have won the jackpot, but I would have five numbers. Cancerpalooza.
So yeah, I am feeling sorry for myself. I’ll get up tomorrow and pull it together and get to chemo with my new skull blanket and some projects to keep me busy for the six hours of poisoning ahead. Cross your fingers that the weather folks are right this time and there’s no more than 3 inches of snow tomorrow. And that I don’t get the evil wicked winter plague that Andy has. And that there’s no more brutal wind. Oh there’s the bell saying take the decadron – be right back. Decadron pills are green. So now I take a pink, purple, green, white, yellow, red and white, and brown pill every day. If I start to take morphine again, I will add a blue one again. A rainbow of pills and no unicorn. So that was my day peeps, what did you do?
It’s time for me to load up the iPod with some podcasts and go down and make sure I turned the oven off because I actually made dinner since by the time I get through chemo sick, the roast would have been ready to throw away. I have to get up early again and pack my stuff. I know this wasn’t one of my funniest or most amusing entries, but hey, we have to take the bad with the good. I am sure chemo will be eventful. Apparently they have me scheduled for an infusion chair instead of a bed, and I am hoping that will change by tomorrow, because I am there for six hours, I should get a bed. I may or may not feel like writing tomorrow after all the fun, but I am sure I will be back in a few days, snarky and sarcastic as ever. As always, keep sending the good juju my way. And I’ll keep you entertained with these thrilling bloggy bits.
6 January 15 | Categories: c-monster, Philosophizings, Picture Perfect, Profound Insights, Random Rambling | Tags: amusement, anxiety, biopsy, cancer, carboplatin, chemo, chemotherapy, ct scan, cyst, death, depression, diagnosis, disease, doctors, flying monkeys, food, hope, hospital, mass, procedure, pufferfish, taxol, treatment, tumor | Leave a comment
Let me begin with this: I am not going to be making a resolution involving vodka and orange juice, because I decided that my relaxation cocktail is just that: pineapple, orange, and veggie juice with coconut vodka. It’s mighty tasty. I am having a lot of anxiety this evening (as will be discussed in the next paragraph) and I am trying to chill because I need to be bright eyed and bushy tailed for my Dr appointment tomorrow. I know I gained a little weight. I am not sure how, but I feel fluffier. I’m not stressing about that, because in three days, I’ll be so sick that food will be my enemy once again and the only thing I’ll want to eat are my go-to foods: pineapple juice, english muffin, oatmeal, yogurt and ginger beer. I want to make a pork roast tomorrow for dinner but I am afraid if I eat my friend, the pig, before chemo, I will lose my love for the other white meat the way I have lost my taste for artichokes and parmesan cheese the last time. And if I can’t eat bacon, what’s the point of living? Right now I am trying to coordinate with my brothers to get me to chemo and back because Andy is afflicted with the winter death plague, and I cannot be trapped in a car breathing his germs for an hour while we drive to Hershey. As it is, he is forbidden to be within six feet of me. And if he gets close, I pelt him with a hand sanitizer. So right now, it’s looking like I will be arriving two hours early for my appointment, and then waiting an hour or two for a ride home after we’re done. It’s gonna be a long, long, long day. But when in my life has anything been simple or easy. Enough stressing about what hasn’t happened yet, we have to review today’s adventure.
Let me preface this with this: the internet is a dangerous tool. Useful, but dangerous. Damn Penn State Hershey didn’t put my MRI results in my “My Health” account like they do with with my CT scans. How am I supposed to make myself anxious all night before my appointment if I don’t read them like I read my CT scan reports? Hmm? How can I prepare for the worst if I don’t have the info? I, of course, interrogated the nice young technician who did my MRI as to what she saw. She confirmed that there is indeed something in there, but I knew that – when I asked her if I should be prepared for an unpleasant surprise at my visit tomorrow, she would not commit. That typically means yes, I should be, because when they don’t put your fears to rest immediately, they are trying to find a way to avoid a straight answer. So we shall see. But again, I can’t worry about that until tomorrow. That is the point of the relaxation cocktail.
Well it was a lovely ride to Hershey. The fog was thick and murky on the interstate, as I tend to like it. It feels like driving in a thick cloud. I forgot it was a travel day and that Canadians would be in our country and on our roads, making driving difficult, which can also be said of New Yorkers, and also those from New Jersey. They should just stay home and enjoy their holidays in their own country/state. I had to stop and get something to eat because I was feeling nauseous, so I also took a percocet because it’s hard to tell if I am feeling sick from not eating or withdrawal, so I addressed both. I tossed back my chocolate milk and rolled into the parking lot at The Cancer Institute, realizing I would need to pick up my parking pass tomorrow for this lot for my treatments. I scurried into the building, looking like I rolled out of bed and fell into the door because I was trying to dress in things with no metal so I wouldn’t have to change into a gown. Nope, that didn’t work. I soon realized I had to go in the main entrance, and I meandered down to the radiology department, the same place that had tried to empty the cyst for the last year. I was the only one there, so I was personally escorted to the MRI room. I filled out my questionnaire about all of my surgeries and tests and radiations and chemos and skin pokings and jabbings and big giant incisions and medications and answered some math word problems about trains and wrote a short essay on what I did on my winter holiday. I signed releases I didn’t read. Then I was escorted to the changing area. It was pretty much the same deal as going through radiation, except there are no animal themed changing rooms and no waiting corral. I did get a locker for my stuff, and I actually had two gowns that covered me, instead of feeling like I always had to close some area that was exposing skin.
In typical fashion, I needed to repeat my name and birth date about 3,129 times. I had to show them my tattoos – MRI tip – an MRI will cause certain inks in tattoos to swell/itch because some inks have metal particles in them, particularly bright, vibrant colors. It’s not the best idea to get a tattoo right before you get an MRI. The technician asked me if I wanted some music during the procedure, and I said sure, but you probably have nothing I listen to – and to my surprise, she said give me the names and I will use Pandora. So I rattled off some of my faves: OWTH, Against Me!, The Go Set, Pennywise, Alkaline Trio, excited that I wasn’t going to be forced to endure One Direction, or Creed, or worse, Nickelback,
We entered the MRI room and to my surprise, the MRI machine is not so different from a CT scanner. However, there is the obvious lack of decorative stickers. I pointed this out immediately, and suggested some Brave, or Jungle Book, but no Toy Story 3, because I am still traumatized from that one. The tech said she’d check but they probably cant because of the risk of metallic particles.
Curiously enough, the room itself has a background hum that sounds like the womb sounds that my Sleep Sheep makes, which would have been soothing if not for their loudness. Unlike the CT meat slicing machine, the MRI tunnel is entered feet first. I had to get an IV started because there would be contrast dye for this one. They put some boards and blankets on my belly, and start the IV, which actually hurts at first. I told her to choose my right arm, because I was saving the left for chemo on Tuesday. Chemo tip – always go for the left arm. You will get a lot of fluids and will spend an inordinate amount of time in the bathroom – you want that right arm unencumbered. We got the IV issue worked out and that arm got strapped down. I was given a emergency call bell in case I started to freak out for the other hand. Then they put my headphones on, and I get launched into the tube. It’s a pretty small space, and I am a pretty fluffy girl. I had wiggle room but not much. The music started to play, and amusingly, the first song is an Alkaline Trio song, Blue in the Face, which ends with the line, your coffin or mine? I found this so amusing but being that I had to remain still I was not allowed to chuckle. The MRI imaging is done in time limited sessions. 45 seconds, 1.5 minutes, and then 2, 4, 5, 6, and (2) 8 minutes. Then the dye is injected, and you do 2 more 2 minute and 4 minutes sessions, and then (4) 18 second images images holding your breath. The instructions to hold your breath are supposed to come through the headphones – the tech broke into the music to tell me to follow along, except the instructions were in spanish, and she then had to just tell me what to do each time.
The actual imaging sessions are noisy. I was doing okay though, because I had music. Curiously, even though I had given her the names of the bands for Pandora, I got mostly Alkaline Trio and the Menzingers, and no OWTH for the first session – there was some Taking Back Sunday and some AFI – but no OWTH or Against Me!. This was tolerable initially, and I shouldn’t complain, because it could have been worse, like noted above, Nickelback, or even, ~shudder~ Macklemore or Pitbull. When the tech came in to start the dye, I asked her to restart Pandora with OWTH and the other requested bands – I got one OWTH song, and then it went right back to the Menzingers – weirdest thing ever, I wonder why that is? Anyway, the last sessions were the most difficult to stay still during because the machine was literally rattling. And your body gets really hot. Like it’s cooking. But I did really well keeping still, I turned on my meditative brains and pretended that I was a corpse. Of course, then runaway brain came along and I started to think about what it would be like to be buried alive, and this is as close as I hope to ever come to it. Then I started to think about all the poor people who were buried alive and what that must have been like to wake up in a box underground and be trying to claw your way out, and then the terrible realization that this is it, and you are trapped and never getting out. I then realized that I need to modify my living will to specifically state that under no circumstance whatsoever am I to be buried, or placed in any boxes unless my heart has been removed from my body or my head severed. That freaked me out. I realized then that the only suitable way to die would be drowning and then eaten by fish. Fear of being buried alive moved to my number 2 fear. Clowns were downgraded. Fire is still at the top. Again, drowning would be the only acceptable way to go.
Returning to our discussion track, there’s a lot of noise during an MRI. Banging and whirring and swishing and thunking. I did okay with most of it, the music minimized it but it still all seems to be going on by your ears, instead of where they are taking pictures. At one point it felt like the hair on my legs was being magnetized Totally bizarre feeling. It’s not constant. It starts and stops, and they tell you through the headphones when the next imaging will start and how long it will last. I only got caught off guard once with the loud banging, and fortunately, since you are in a restricted space, you can’t really jump out of your skin. I kept referring to my meditation practice and controlled my breathing the best I could, trying to relax. This is an important tip for those having an MRI. Work on your breathing. When it was all said and done, and I got to sit up, my whole body was stiff from staying still for so long. Even though the actual imaging session are short, the whole process lasted about 1.5 hours. Keeping still is a lot more work than you would think it is. As I mentioned, I asked the tech what she saw, but I also asked her why they do MRIs on a Sunday. She said they have to staff the MRI 24/7, and since someone has to be there all the time, they decided to make use of those hours by scheduling outpatient scans so they use the time effectively. There are a lot of emergency and rush procedures during the week, and it’s really stressful. Weekends are more laid back, there’s no tension and it can accommodate both staff who want to work only weekends and patients who need an urgent but not immediate scan, or people who can’t take time during the week. My tech said she actually prefers being there and doing procedures on the weekend. I have to say, it is a much more pleasant experience for the patient too because you aren’t jammed into a room of sick people to wait and you don’t feel rushed and everyone seems more calm and relaxed. There’s also better parking and fewer people in the buildings. After I regained my sense of stability, I was given my key to my locker and changed into my clothes and then scurried (IE. Walked slowly and stiffly) to reward myself with a chestnut praline latte at the hospital’s Starbucks. Twas yummy.
I took a longer scenic route back home – I had planned on going to dinner with my sharksister, Ashley, but she came down with the flu or plague or west nile last night, and we had to cancel. I was disappointed because I was really looking forward to seeing her, but we’ll have time, I have 4 months of appointments yet. We were going to go to Pho Miss Saigon in Hershey – a super yummy pho/noodle house – I still don’t have much of an appetite, but I was looking forward to Vietnamese iced coffee, which is my most favorite. If you frequent the Hershey area, I highly recommend the spot, particularly if you like pho or noodle dishes. It was still quite foggy as I headed home and was dark, so more stupid people than usual were about to hinder my ride home. Tomorrow is doctor and blood work day, and laundry. Weirdly, I need to make sure that I have a fresh blanket and sheets on my bed for after chemo – because of the whole weird smells thing, I need to have things as fresh as possible the first few days. Andy is also going to need to clean the car and quit smoking in it, because the odor of cigarettes is the one scent that makes me want to immediately hurl once I start chemo. At least I know what to expect. I also don’t have to have the nasty neulasta shot, at least not initially, so that’s a huge plus. That shit is the worst part in my opinion – the pain in your bones is as horrible as the pufferfish. I’ll have to get a picture tomorrow while I still have my hair…I figure it will be gone by the beginning of February I’ve started work on a fox hat, and I have patterns for a raccoon, panda and queen crown.
So that was the MRI. To summarize, much like being buried alive but without the bugs or dirt or paralyzing fear. Also much noisier. Not for the claustrophobic. In other news, I facebook blasted that my cancer is back – it may seem like an attempt to get attention to some, or putting “my business out there” but you know what, I don’t really care. People are naturally inquisitive – they want to know – and I don’t think this is something I need to keep private. It’s scary and people are curious. If I make it easier for someone else, all the better. With that ma petites, I shall leave you for today. I’m gonna finish my cocktail, and tuck myself in. Hopefully I’ll have more details tomorrow. Sweetest dreams my friends, and like I said on facebook, send me your good vibes, positive thoughts, prayers, animal sacrifices or good juju, I can feel it and it helps.
And don’t be afraid to ask me questions – it doesn’t bother me a bit.
5 January 15 | Categories: c-monster, Philosophizings, Profound Insights, Random Rambling | Tags: alcohol, anxiety, bald, biopsy, buried alive, cancer, carnivorous kangaroo, chemo, chemotherapy, clowns, cyst, death, doctors, flu, flying monkeys, happiness, hershey, mri, music, pain, plague, procedure, pufferfish, radiology, restless, stress, tattoo, treatment, tumor, uterine cancer | Leave a comment
That’s right, my lovelies – I did not run over any armadillos, I did not get a cat, I did not mix vodka with orange juice, I did not become a brain eating zombie, I managed to stay awake for at least one hour a day, I resolved to clean the house when absolutely necessary (which it never truly was), I did not use a drone to attack the neighbors, I ate no cauliflower, I checked my phone once a day, and I never told facebook what city I live in, no matter how many times it asked. 10 Resolutions made, 10 completed. Completing such daunting tasks gives me such a sense of satisfaction. I don’t know that I can top this in 2015, but damn it, what’s live without challenge?
I’ll get to this year’s resolutions in a moment. I really want to give the real ending to the attack on the cyst, because I couldn’t before I told my dad (aka pop) the facts – I didn’t want to ruin the holiday for him or for my niece – I mean I had to ruin it for Andy and some of my brothers, co-workers and friends, and of course, it was a bit of a downer for me too, but I couldn’t do it to my dad. I think I’ve told most people, if I haven’t and this is where you get the news first, I’m sorry. It’s not the thing you get any enjoyment out of telling people and one thing I’ve learned is that no matter how many people I tell, there’s always going to be someone that I forgot to. I can think of five or ten or fifteen now. Fact is, I’m tired of telling people. Here’s a fact: Telling people you have cancer (again) is fucking hard. You feel bad that your are giving people bad news, you feel you have to make them feel better, they always ask how they can help and it’s just generally a bad thing. If I tell you, just tell me that you love me. Or if you don’t love me, just say, hey, whatever you need. I’ll keep talking if I feel like talking about it, and if I don’t keep talking about it, and you have questions, ask me. I have a blog, seriously, it’s not like this shit is secret.
Anyhow, I read the CT scan before the surgery. I saw the words “possible malignancy” – I saw the look on the ER doctors face when he had to tell me there were some concerning items on the scan. I know my body. I knew something was wrong. After surgery, when Minion 1 arrived, and I asked her about the offending nodule and if they found cancer, she danced around it, saying that they “don’t think” anything is wrong, but they are only using human eyes. I much preferred the way I found out the first time – the resident held my hand and said it straight up, we can’t confirm it yet, but from the preliminary pathology, it looks like cancer. This time, I knew I was going to hear not very good news at my appointment. I know when they take a biopsy, they look at the sample to make sure it’s a good one. They don’t just randomly snap out a bit of tissue and hope for the best. And while they are checking, they can notice whether they have good cells or abnormal cells. Sure, they may not know if it’s malignant with certainty, but they know if something’s up or not. Minion 1 needs to work on her delivery. I should give lessons.
I also knew I wasn’t healing as quickly as I have in the past. I had some pretty hideous bruising. I lost my appetite. I knew things were different, but I wanted to believe what the Minion 1 told me. So when I got to my appointment on the 22nd, I was ready for the news, or at least I thought so. I went by myself because Andy was in Pittsburgh with my nephew and brothers for a Steelers game. I didn’t want him to not have fun because I had an appointment. I asked my niece’s mom to go with me last minute, but she couldn’t. So I just resigned myself to going it alone. I got there on time, checked in, and waited. I got weighed, and found out I’d lost 40lbs since October. That’s a lot. And then I waited. My blood pressure was almost normal, but there was much excitement by the nurse when I told her I was off the morphine and just taking percocet. I wasn’t in pain. That’s good. Yay. No need to undress. Hang out, Dr. will be in. Now, Dr. K is a presence. He’s a tall, funny guy, with a southern twang to his voice and he’s always cracking jokes with nurses and staff and patients. I suppose you have to when you have to give the news he’s giving. He’s almost never late. I can sometimes hear him talking to other patients when I wait for him. Today I can hear him telling one that they will beat this thing, and that they will be in to review the chemo and radiation schedule with her, etc, etc, etc. Not good. It’s still taking a while for him to see me. I wonder where my treatment coordinator is – I have presents for her and Nurse Sue and Dr. K – just little holiday gifts to say thanks. I don’t hear Anne outside either – not good. Finally, Dr. K arrives with Minion 2 from the ER nightmare. They sit down. Sit. That doesn’t usually happen, so yes, it’s another harbinger of doom. Dr. K looks at me and doesn’t mess around – the biopsy shows cancer, and launches into how we could treat it. No surgery, no radiation, two different ways to address it with chemo, there’s no protocol for cancer in this area, quite frankly he doesn’t even know how or why it came back, it shouldn’t have at this point, once you pass two years, there’s a much less likelihood of recurrence. I just kinda look at him, and tell him I don’t have dying on my agenda. He said that’s good because he hasn’t, and isn’t, giving me permission to die. I’m not crying, I’m almost relieved because now I know – I awkwardly hand him the card and ornament I brought him – tell him I don’t know if he Jewish, or celebrates Kwanza or Christmas, but he can hang the ornament on his Hanukkah bush if he wants to – and thank him for taking such good care of me. I can tell this is as hard on him as it is for me. I think the Minion 2 wants to bolt, but is glad I am not crying and that I am, matter-of-factly, addressing what I need to do. Dr. K tells him to talk to me about the MRI, since he hasn’t staged it yet, and needs the MRI to determine what all is happening in the dark recesses of where the stupid pufferfish lies. I tell him I think the unwieldy beast is starting its dark resurgence because I’m having some discomfort in the area, and he says that’s what he wants to see on the MRI. Minion 2 has ceased sweating, I truly believe he thought I would lose it like I did when they offered my the psych hold in the ER. I maintained calm. OK, I was in shock, but it still didn’t involve crying.
You are never really prepared for the news. I’m still not sure I have accepted it, and probably won’t until they hang the poison bag on the rack and it starts dripping into my arm. Dr. K and I hug, he assures me that we will kick cancer’s ass and be laughing about this in no time. He tells me this is a shitty way to end the year, and a shitty way to start a new one, but go home, enjoy the holiday, and they will call me with the chemo schedule the day after Christmas. I tell him I trust him, he got me through it the last time and will this time. I shake the Minion 2’s hand, and like a scared bunny, he hands me the packet of papers for checkout and flees the room. I head to checkout. As I stand there, alone, having just been told my body has betrayed me, it hits me, and I tear up. I have cancer. Fuck. The receptionist asks me about the papers – I tell her all I know is I have a 4 week appointment on the 5th, and Dr. K wants me to have an MRI. She asks if it is scheduled – I tell her I don’t know – I was just handed papers by the Minion 2. She looks, and doesn’t have a clue why I have been handed all of Dr. K’s results and notes. I suddenly realize I need a note for work, and another prescription for percocet. I ask if she can get that for me when she asks him about the other papers. She does – he tells me I’m off until after my 4 week check up. I realize we never even looked at the incisions. Good thing I heal OK. She comes back with all my papers – I ask her if she can give Anne and Sue my cards and ornaments. She will. I’m still not really connecting to any of this. I get my appointment for the MRI and visit summary and head for the elevators.
I don’t break down until I am in the car. Then I am a snotty, sobbing, weeping, sniveling, snorting, coughing, choking mess for about five minutes. And alone. Horribly alone. And also very glad to be alone because I don’t have to worry about making anyone else feel better about my breakdown. I text who I need to text. I need to get groceries while I am down here. It’s funny how the trauma and the mundane activities intersect here. I need to get food. I also need to get home. I start the car and go to Giant, and mindlessly wheel the cart up and down the aisles, tossing shit in I don’t really need, but I have a fuck-it-you-only-live-once attitude and decide we’re having a fucking rib roast and ask at the butcher counter for a small incredibly expensive rib roast. Two hundred dollars later, I’m checking out of Giant with my rib roast. I forget to buy water. I’m not even hungry. I need to go home and that’s the last place I want to be. My iPod won’t fucking charge. I’m not going home until I have the opportunity to sing loudly with my iPod, and preferably with OWTH, until the pain inside is purged. I must also see my friend, Pony-Pony. I need some normality in this surreal scene. I also need gas. Actually, GAS first.
So I drive – first to a gas station. I fuel up and head to the MHS barn to see Pony-Pony. He’s not there. They probably are making him be the stupid donkey is some live nativity somewhere. I keep driving. I see my friends, the goats, at the goat barn, and I yell “fuck you” at the sheep in their pasture. My iPod is still not charged. I see some cows. I see another pony, and another, none of which are Pony-Pony, but at least I saw them. I keep driving. I realize my blood sugar is quite low, and I am a little shaky – I’ll got to Hardee’s. This whole time I feel like I am in weird freaky film where my character is in a dream world unbeknownst to everyone who sees her. It’s like none of this is real. I finally get the iPod charged enough to commence screamsinging. Fortunately, RTE 322 is not busy and I can cry and sing and drive all at once with no worries. It’s not real. It’s not real. I get to Hardee’s and order some sort of burger and onion rings. I manage to choke down the onion rings. I head home.
The drive was cathartic. And pretty scary. Occasionally I would look down at the speedometer during pauses between songs. I pushed 100+mph more than a few times. It’s not really my fault the car goes that fast. I slowed down several times. I wanted to get home and then I didn’t. I would have to tell Andy and then other people. This is the part that sucks. I finally drove home – I walked in and Andy was all excited to tell me about his trip and the game – and I killed that with a look. He asked how the visit went and I lost it. I sobbed and cried and told him how sorry I was he had to go through this all again. My kid is a good hugger. He told me I was the strongest person he knew and it was just cancer, and I could beat it. Then he proceeded to hug me some more. When he was adequately covered in snot, he went and got the groceries from the car. I didn’t want my expensive rib roast being stolen in this neighborhood
The C-monster is such a fucking burden. Not only do you have to worry about being sick, but you have to worry about bills and work, and the house and telling people and not upsetting people all while being told that this is the time you are supposed to focus on yourself. If there are people who are able to do that, I wish they would have a network where you could find out their secret. Because once you recover from the shock, you have to think about who to tell, and when and where and how and how are they gonna react and if they are old, like my dad, are you going to kill them? And then there’s the logistics – appointments and chemo and food and laundry and the joys of all the changes in smell and touch and taste. And when you have been the head of household for the last 24 years, that just doesn’t stop, you still worry about that. It’s just a lot. And no matter how much you have people tell you they will do whatever they can to help you, you don’t want to ask, because you don’t want to be a burden, and you want to be strong and tackle this yourself.
I’m tired of writing tonight, and I am tired of watching this fucking pathetic Steelers game while I type. I’m tired of being sick and doctor’s appointments, and not wanting to get out of bed. At least there’s minimal pain. At least there’s plenty of food in our house and we have functioning utilities. I can still write. My bed is comfy. I have a new blanket to take to chemo with me. It’s all gonna be over in 18 weeks (it better be). Tomorrow is the MRI – it will be a whole new experience for me, so look forward to that blog entry. I sure hope there’s no metal inside that suddenly gets torn from my body like I’ve seen in horror movies.
Good night my happy people…I’ll be keeping you updated – hug on your loved ones and do something fun with them before they can’t, or you can’t. Sleep well. Oh, about those resolutions, still working on them. I won’t be bound by your constrictive linear timetables. Kisses.
Oh yeah – three years ago yesterday, I got my first diagnosis. Happy Anniversary. I didn’t know the 3rd anniversary was also cancer.
4 January 15 | Categories: c-monster, Philosophizings, Profound Insights, Random Rambling | Tags: anniversary, annoyances, anxiety, bald, biopsy, cancer, chemo, chemotherapy, children and youth, cold. flying monkeys, ct scan, cyst, diagnosis, disease, doctors, family, fear, flying monkeys, gratitude, happiness, health, hope, hospital, humor, ipod, life, malignancy, mass, mri, narcotics, New Year, pain, positive attitude, procedure, pufferfish, selfesteem, side effects, surgery, survival, treatment, uterine cancer, whining | Leave a comment
Well, well, well, I’m back to write. I bet you’ve been wondering if you’d ever hear from me again. It’s been a long haul. I’ve been tempted to write a million times, but when you are on morphine 24 hours a day, you tend to lose interest in things you love, and/or lack the enthusiasm to finish things you start. It was like being in a fuzzy cloud, and one that didn’t feel all that awesome. I knew what was going on, could function, but sometimes my brain stopped dead, and I couldn’t remember what I was doing, or what I wanted to do. What was harder still, is because you “appear” normal, albeit somewhat slower than usual, people don’t quite grasp that you aren’t yourself in any way. Unfortunately, after the horrible experience in September, in which we attempted once again to thwart the pufferfish with drainage, that ultimately backfired and cause me unprecedented pain, I had to try and manage the pain in any way I could.
Until I couldn’t.
Some of you know what happened next, some of you don’t, and for those of you who are new to my blog, this is the true story of a girl and her pufferfish. And the tiny blue pills. And tears, lots of tears. It may be a two or three parter – I have a lot to write about and this morning I’ve decided I am not taking any more morphine, and just going to try to finish my withdrawal from opiates by weaning of the percocet instead – but that’s for the end of the story, and I’m jumping ahead.
It was the week of thanksgiving. I had to leave work early on Monday after court because I couldn’t even sit down – I was on the phone with an agency provider discussing a family and I was in such brutally punishing pain I wanted to scream, drop the phone, and run from the building. As she’s telling me about her concerns I’m fighting back the tears, and trying to get the attention of one of my coworkers to ask her if she could please take me home because I am not going to make it through the day unless I drug myself to sleep. Finally I just said, I’m sorry, I have to end this call, I’ll call you tomorrow and with the kindness of Momma Y, I made it to the sanctuary of my bed and sweet narcotic sleep. I made it through Tuesday, and Wednesday ended up being a ½ day snow day, so I had four days to try and recover. I spent all of thanksgiving in bed. I was supposed to go to my sister-in-laws, but I was suffering and it was best done alone and not in the company of others. My brother brought me food – I ate about two pieces of turkey and a few forkfuls of stuffing and spent most of my time in my bed asleep. On Monday, despite the lingering pain, I tried to convince myself I could go to work. I got up, dressed nicely, and headed off to the office. I made it until lunch time. I lined up some people to cover my on-call, (thank you Amanda and Kaylee, I know you probably don’t read this, but thank you anyway). I called the Dr.’s office that afternoon and they assured me my pain was likely constipation from the narcotics. I disagreed, but I agreed to follow their instructions. Without being totally graphic, it involved taking things to make my body expel waste. It mostly worked, but did nothing to alleviate my pain – it made me feel a little better at first, but that was short lived. I had to stay close to the bathroom – until things seemed to shut down completely. I mean stopped dead. I thought my body had just said no more.
Now it’s Wednesday morning. I wake Andy and tell him I need to go to the ER. We get in the car and I endure the horrific hour-long ride to Hershey. I could have gone to a local ER, but since all of my records are at Hershey and I trust them more, I suffered the trip. Luckily the ER is empty. The triage nurse takes my vitals, and we head off to an exam room – and as we turn the corner, we walk smack into a small group of hospital staff in haz-mat suits who will not allow us to go further – yes, haz-mat suits. They redirect us and the nurse assures me it’s just an Ebola drill, not really an Ebola outbreak but all joking aside, the way I was feeling, if expelling my internal organs in a bloody heap would stop the pain, I was down for it! We round the next corner, and bam! – more haz-mat suited peeps. No entrance. We reroute yet again and finally I am permitted to enter an exam room. The doc comes in, I tell the long sordid story of how I ended up here and my stupid ass pufferfish and tell them my pain is at an 8 after taking 15mg of morphine 3x a day and at least 4 percocet in the last six hours. He orders a CT scan and some dilaudid. Yay for dilaudid. Yay for CT scans. Yay for someone taking me seriously.
Now is when the story starts to get amusing/sad/disconcerting. I’m waiting for a CT scan. A new nurse comes in, a new doctor, another nurse, and every time I have to tell the story of how I came to be in the ER starting with my hysterscopy, hysterectomy and the c-monster treatment. I wait and wait for the CT scan. In the meantime, I get an IV started, and they ask me for a urine sample. I can’t pee. I haven’t drank anything in hours, and frankly, the last few weeks, I can’t pee on demand without pain and a short walk around the house first. So guess what I get? Yep! Catheter. And sad to say, I was perfectly okay with that because I was in so much pain, that couldn’t be much worse. Well apparently it is. But whatever, I am just glad I am in the hospital and they will make me well.
Finally, I’m off to radiology. I get a CT with contrast dye in a cool machine with Minion stickers. I am glad that Hershey understands the importance of stickers on the CT machine. It makes it so much more relaxing. The staff are great, they always joke with me and help take the edge off. Then it’s back to the room. Dr. #1 eventually comes back and tells me that gynecological oncology is looking at the film as there are some concerning developments and they will be over to talk to me because I may be admitted for surgery to day. Nervous at the word “concerning” but relieved that I am not crazy and relieved that there are changes in pufferfish, and that I am not just imagining it, I nod in understanding. It’s okay, the dilaudid is still working, and I’m sure I am going to find relief.
Understand that my doctor, Dr. K, has elected to take his family on vacation this week, so he is not privy to these developments, but they assure me his associate Dr. F will be over to talk to me. The door opens – enter two gynecological oncology minions – and no Dr. F. I ask if I will be gutted today – they say not likely, and proceed to examine me – they ask about my pain, and my use of colace and senna and what’s going on. I ask them about the CT scan – they say they didn’t really see too much of difference, the pufferfish is only “marginally” bigger and there’s a nodule now growing inside, and the fluid is clouding and not clear like it was, but they think it’s just because pufferfish ate the hematoma outside of it. I’m dying of thirst. I’m crying again trying to tell the story and explain my pain. They look at my stomach and notice some (old) bruises. I explain that I pushed again the banister trying eliminate the pain in my stomach, and could have possibly caused them. I also bump into the top of the banister frequently as well, which inevitably leaves a bruise. I am fat, I have a huge belly, I sometimes don’t negotiate well in the middle of the night when I am trying to get to the bathroom. They seem appalled at this. I don’t get it, but they assure me, they will be back shortly with Dr. F. They will have a plan. They are pretty sure I am going home today. They scurry out.
At this point, it’s noon. Andy has been patiently sitting with me, but he has to work tonight, so I try to get someone to come bring me home if I am not going to be admitted, so he can go home and get some sleep. When the minions and Dr. F don’t return by noon, dear sweet Paige agrees to fetch me home and I dismiss Andy. I am alone. Waiting. It’s now 5 hours in the ER. I continue to wait.
Enter Dr. F and the posse. She’s very nice. The dilaudid has worn off and no one asks about by pain level anymore. I can only lie on my side, but I roll onto my back for another exam. Dr. F talks about the CT scan – she says if I was her patient, she’d remove the pufferfish, but she has to wait for Dr. K to come back because I’m not her patient. Great. She uses words like sympathize and empathize and I tell her she has no clue what I am feeling because unless she has had chronic pain herself, she has absolutely no understanding. I need this thing out of me. It is causing me crushing pain, which she proceeds to dismiss as constipation, and tells me I just need to follow the colace/senna regimen for a few more days and it will go away, because my pain is now the result of massive amounts of narcotics, not the pufferfish. I disagree – it may be compounded by it, but it’s the pufferfish, it’s in my fucking body and I know what is hurting me. Then comes the most ridiculous part of the tale – she says her bigger concern is the bruising on my belly. She is concerned that I am trying hurt myself and tells me that she herself gets a little crazy with road rage from time to time and that she will be happy to allow me to stay overnight if I feel the need to be safe and talk to someone. Meltdown mode initiated. Eyeroll commences. I try not to react inappropriately, and through my tears, I tell her I do not need a mental health hold, I need someone to stop the pain. She says, no, no, she doesn’t think I have mental health issues, but just that she is afraid I am doing dangerous things to hurt myself because I can’t cope. I tell her that is insane. I was just trying to help relieve the pressure for a few minutes, because I couldn’t make the pain stop, even with all my pain meds. I don’t need to talk to someone about my pain or how my pain feels. It hurts and talking to someone about it, will not lessen it, extracting the pufferfish will. Thank you very much for thinking I am on the edge of a mental break down, but make my pain stop. She then proceeds to tell me that there’s really nothing they can do, so go home, keep taking pills, and come back and see Dr. K on Monday for my scheduled appointment. Really? 8 hours in the ER, and your response is, head on home and come back on Monday. Unless you want to spend a night on the psych ward, because sure, that’s gonna help. They will do nothing to help manage the pain, but they will help you talk about it. My response, no thank you, I will just go home and cry myself to sleep. Dr. F tells me she has ordered a suppository to help with the swelling in my rectal area. I ask if this will stop the pain – she says it might. Might. Yay. That’s fucking awesome. Another hour waiting for the suppository. 9 hours. I feel not one iota better than when I came in, in fact, I feel demoralized, frustrated, and now, starving. ER Fail.
It doesn’t get better. I go to the hospital cafeteria. I spy the special tandoori chicken wrap. Of course, it’s sold out. Why wouldn’t it be? Curry makes me feel better, so of course there isn’t anything curry flavored to help me. I choose a veggie brie and mushroom sandwich. The lady at that station is mostly ignoring me. Finally she acknowledges me and allows me to purchase some food. It’s cold. So now I have to figure out hot to warm it up. I find a microwave and make it lukewarm. I inhale it because I am starving and suck down a green juice. Sated, I head off to the lobby to await Paige’s arrival. Fortunately for me, there are screaming children in the lobby as well. And potential clients. I only want to go home. Home. I want to take a handful of pills and sleep. Please.Let.Me.Sleep. I could have had just as much success with treating my pain at home as I did here. Children continue screaming. Fucking hurray.
Paige arrives to rescue me and bring me home. I pass Andy on his way out to work, fill him in.
I can’t go back to work – I can’t sit or stand or lie on my back or stomach. I can lie on my side. Until that side goes numb and then I flip. Moving causes pain. Walking causes pain. Eating causes pain. Breathing does not cause pain, but allows me to remain alive, which causes pain. And my mind is still chewing at the fact that the only thing that was offered to help manage this pain was a psych hold.
The days pass waiting until Monday. Monday I see Dr. K. Monday Dr. K will fix me. I drift in and out of painful sleep, spend too much time in the bathroom in futile efforts and spend an equal amount of time rocking myself back and forth trying to make the pain stop.
Of course, this part of the story wouldn’t be quite complete without me sharing the fact that I also can see my CT scan as part of my health record. I can also read the summary. I see the words “potential malignancy” “node” “marginally larger”. Previously, pufferfriend was 10X11X9cm and today, it is 12X12X10cm. In one month. Now, yes, it seems like that’s not much, I mean it’s centimeters. Pufferfish is located in the pouch of Douglas (here’s where you google where that is). There’s this ancient torture device called the pear of anguish. It used to be inserted into the vagina or anus of the victim and then it was opened internally, mutilating them while causing unimaginable pain. It would be slowly increased in diameter to rip you apart from the inside (again, use your google skills for the detail) An 1 or 2 cm increase in the size of the pufferfish = 100 or 200% increase in pain. It’s no wonder that the morphine isn’t even touching this. It’s an internal wedge between my bladder and rectum and it’s making everything else compact so that it can take up the space. Fuck you “marginal” increase – it wouldn’t be so marginal inside of your uterine cavity or if someone started ramming a giant tree branch inside of you that just kept getting wider and wider. It’s like having a baby grow inside in a very wrong area, and without a reward at the end of nine months. I’ve had this thing longer than I carried Andy, I’ve had it longer than I had cancer treatment, I’ve had it too long. It must come out.
At this point my friends, I will pause and leave you hanging for the rest of the story. I don’t want to write a novel as an entry, and this shit’s already three pages long. I will tell you that things have improved somewhat, and will return with details tomorrow, because I know, you can’t even imagine not knowing the intimate details of what happens next. It’s no Sons of Anarchy finale, but if you like medical dramas, it’s all about that, both medical and dramatic. So enjoy chapter one, my friends, and I will return with my next installment tomorrow.
18 December 14 | Categories: Philosophizings, Profound Insights, Random Rambling | Tags: amusement, annoyances, anxiety, biopsy, cancer, cold. flying monkeys, ct scan, cyst, disease, doctors, happiness, home, hope, hospital, life, pain, peace, procedure, pufferfish, restless, sadness, surgery, writing | Leave a comment
First, I apologize. I’ve been lax about my blog. Not because I haven’t had anything to write, because I have, but like so many other people who write or draw or do creative things, occasionally you feel like you are boring your audience (even when your intended audience is yourself) and you can’t get excited about things as you used too. I’d blame depression, but for me, depression is often the one time I want to write because I don’t want to keep that chaos bottled up in my brain case. I didn’t want to bore anyone with my incessant whining. However humorous it often is. So I’ll recap, and then end with the current quagmire.
Picture it, Shenandoah in mid-July, 2014. We’re headed off to have the pufferfish poked and prodded and punctured and badness sucked from it’s soul. The day after the procedure I am stunned by the relief that comes after pufferfish is defeated. I revel in the painless days and nights – I don’t even touch the percocet or the Advil or the Tylenol. There’s no need – I am happy to frolic about without even an inkling of pain. I can eat with reckless abandon, and I do, nom nom nom, like a non-stop Miss Pac-man gobbling anything in sight. Yeah, yeah, I gain a few pounds, but hey, my body is functioning normally again. I am happy. My two year cancer free anniversary comes and goes, with nary a second thought because I am blissfully not being tortured by my body. I go to my one year radiology check, and gush at Dr. J about how not in pain I am. I do things like swim. Ahh, life is good.
At least it was. For a while.
About four weeks later, I start to notice subtle changes in the way my bladder is acting. I harken back to the days of pre-pufferfish-puncture and suspect that it may be returning. I try to pretend it’s not, I mean, hey, I’m not in pain. Changes keep happening, and I feel something pushing itself about in the great darkness. I’m pretty sure stupid fucking pufferfish is back, but hey, there’s still no pain, so perhaps I am just projecting the imaginary growth of a giant grapefruit sized squishy mass in the darkness of uterus-used-to-be land. Then, without warning, one Friday morning, at the hour of 4:30am, I awake in screeching agony. Welcome back pain, we’ve been waiting. I rock back and forth in bed, stuffing Advil into my mouth in between sobs, cursing the fact that I should have already called the Dr. After about, oh I don’t know, maybe 15-16 Advil, I am able to move without the shriek of a banshee. I head to work.
I should have called the Dr that day, but I didn’t. It could have just been a fluke. I would have preferred a fluke inside me instead of the pufferfish. I thought I should just test my theory. Just one more pain day, and I will call then. I swear it. I don’t know why I didn’t believe my body when it was clearly telling me what I already knew, but hey I never claimed I was the queen of good judgment Although the next two or three day were pain free, my body is never one to disappoint and BAM, pain’s back. Daily. I call the Dr. and in another week, I’m off for another CAT scan. I know what’s going on, but apparently, my word isn’t as convincing as a CT scan. There are still no cats at these scans, which is good because I don’t know if I can refrain from attacking one if I saw it considering the amount of pain I am in. I am eating Advil like it is candy. And there is only ONE, just ONE percocet left from this last prescription. I am saving it for that night when I seriously am weighing the option of self-surgery in which I remove the perpetrator of my pain myself and nail it to the wall. Then I will take it. That night comes pretty quickly and much to my glee, I realize that I have not paid close attention to the stash of narcotics because there are almost two left. There is one tablet, and a half and a quarter from another that I was clearly gnawing on at some time past. It’s an opiate miracle.
Now I am sure I mentioned before that my scans appear in my medical records long before I hear from my medical team. This time is no exception. I can clearly read that gargantuan sea creature has again returned and it trapped behind my bladder and on top of some nerves and is wedging itself snuggly in there to make sure it maximizes the torture experience. Oh, and this radiology student/resident/drwannabe has taken upon himself to decide that my spleen and pancreas are atrophied. What is this new development?!?! Away to Google we must.
Google at the ready, I enter this new information. As Google does, it gives me the most terrifying response one could expect…these are the first signs that the above referenced organs are affected by cancer. I know what pancreatic cancer means and that’s death. So, it’s 7 pm, there’s no Dr available, and I have just read in my CT scan results that I am not only full of the vile fishy torturer but I am facing death. Most of my friends try to talk me down. They know the perils of googling symptoms, but I will not be deterred. I know I am dying. FML. I will acknowledge that being the reader of several of these scan reports that say nothing else is wrong but the bloaty fishy in the past, that perhaps this new scan reader is an arrogant ass who just wanted to find something else the others did not. I agree to not make funeral plans until I hear from my Dr. And the longest 18 hours of my life begins.
Finally my treatment coordinator calls and leaves a message that I will be treated to another delightful out patient visit to radiology to have my friend puffy aspirated. It will be on Tuesday. No, it cannot be on Tuesday. I have training that Tuesday. I call back. We will reschedule, and I am told in no uncertain terms, to stop reading my own CT reports. Don’t worry about the spleen and pancreas until they do it with a contrast dye. And your new date of probing and poking is next Friday. I ask for a new prescription of percocet so if this repeats again, I will be ready – they say it will be ready for me at the procedure. Unfortunately, I am not going to make it without percocet until then, and I call on Tuesday, begging to be able to pick it up. I head to Hershey and retrieve my magical paper. I try to fill it at the hospital pharmacy, but it will take an hour! AN HOUR???? I don’t have an hour…so I take it to another nearby pharmacy and in just 30 minutes I am on my way to sweet fuzzy relief. I get home and sleep the sleep of the blessed poppies. I manage to avoid taking the magical tablets during the workday, but on Thursday night, the throbbing and stabbing are not quieted easily, and I head out for my procedure in drowsy narcotic haze.
Andy drives me to the hospital. I tell him to not even bother coming in with me, because I know the drill and I will just sleep till the designated pufferfish slaying time. He can reappear during my recovery period. I arrive and hop into my hospital bed. I tell the nurse that I had to take percocet before coming to the hospital and that I would like some more. Denied. They will talk to the Dr. and see if they can give me some pain meds during the procedure. The very kind and helpful nurse tells me they usually don’t give any pain meds because it’s not a painful procedure, I’ll just feel pressure. I sweetly tell her that this is my third go-round and I am feeling pain now, a six on the 1-10 scale, and there will be pain during the procedure, pressure is just a nice way of saying it will fucking hurt. I have gone through this twice, I know there will be pain. She assures me she will let the Dr. know this. She tells me I am lucky, Dr. S will be doing my procedure and he’s a great Dr. I am somewhat relieved. I relax as much as a person writhing in pain can until they wheel me into the procedure room. It’s a bait and switch. Dr. S. is there, but he’ll be supervising Dr. G, who will be the gutter of the day. I slide into the CT machine and there, inside the machine is that pufferfish sticker that mocks me every time I am there. I stare him down and mentally tell him he will not defeat me. Another kind nurse discusses what position I should be in, I just tell her how we do it. She promises me some fentynal. I like this nurse.
The procedure begins. I can tell from the start that it is not going as smoothly as the previous two. It feels rougher, less routine. Then I hear, from the twilight of my fentynal/whatever else is in that IV drip the ominous “oops, uh, not, not that, stop, okay” and some more rough movement toward the pufferfish. Yes, I am awake through all of this. I feel everything. The kind nurse with the fentynal asks if I am in pain. Seven I say, I am at seven. She ups the meds, and while it still hurts it’s not as bad. Soon, it’s over without any more issues, and I feel the relief that comes when the beast is defeated. There’s still pain, but it’s a different soreness and not monster eating my spine. And tomorrow I will feel nothing but a little ache. It’s totally worth it.
I hop back onto the hospital bed and get wheeled back to recovery. The nurse there lets me skip out early after Dr. G checks in on me. I told him I felt fine, because well, at that point, besides the achey soreness I did. They drained as much fluid this time as they did the last time. Hopefully this will be the last time I will have to endure this. I spot the cute male nurse from the last time. Hey wait, I’m not ready to go yet…
But I go. Saturday dawns and I’m still pretty sore. No problem, I’ll just stay in bed. Sunday morning and the sun’s shining on me. Still hurting. This is not right. But maybe it’s just because this is the third one. I’ll just wait and see, and sleep some more. Hey whoa, Monday’s here. PAIN. PAIN. What’s this???
Well, I’ll just give it until Wednesday. I mean no reason to jump to conclusions. Tuesday. Ditto with the pain thing. Not happy about this. But it’s SOA night, I’ll just rest. Hello OMFG-what-the-hell-is-wrong-with-me-and-who-replaced-my-hip-bones-with-jagged-razors-broken-glass-rusty-nails-Wednesday? That’s it. We’re calling Radiology. I call off work, I call radiology, Dr. G assures me that it’s a good thing that it’s just this razor pain and no fever, because at least I don’t have an infection. I can’t lift my leg over the bathtub to shower, but hey I won’t die of sepsis. Come on down for another CT scan, and we’ll see what’s up. We get there – I can barely stand up straight. I go down for the scan, they get me in quickly. I enter a new CAT scan room. The first thing I see staring at me is that mean pink bear from Toy Story III. This is a bad omen. It all goes okay until I have to get off the machine bed. I am in blood curdling screaming pain, and I am sobbing. The nurse helps me to the waiting room. After a short wait, a nurse comes in and tells me to call Dr. K., my gyn-oncology. It is not a positive sign that it’s not radiology that wants to talk to me. Now I’m scared.
They gave me a direct line to Dr. K. By the time he gets on the phone, I am crying out in the courtyard like a giant baby, a baby who is can’t sit because I am in so much pain. He tells me there’s a hematoma on my peritoneum from a vein being nicked during the deflation procedure. That’s why I feel like there are razors slicing me to ribbons. He wants to see if it will resolve itself. He is prescribing me a long lasting more powerful pain pill to take with the percocet. I ask if I can work, and he laughs, and says I shouldn’t even be worrying about work with this pain but yes, I can work, if I insist on it, but I should stay home a few days let the pills work. It’s a narcotic damn it. He says if it’s not better by Monday, we’ll figure something out. He doesn’t want to do surgery, not at all, because the pufferfish is in a deep awkward part of the uterine ocean, like the Marianas trench of uterine cavities. It will be a severe major surgery, and it won’t be easy, there are no guarantees that they will even get to it, or that it will resolve it. But we’ll talk in a few days. Take the pills. Rest. I tell him I will send Andy up to pick up the prescription and to tell the nurses to not be afraid to give the 20 something kid with the dreadlocks the powerful morphine prescription because his mom really is in the car. He laughs. I say, “you think I am kidding, I’m not.”
We get the prescription. While it’s getting filled, Andy tells me all the ways we can parlay the pills I am given into cash on the street, enough to supply oil all winter and have cash for a vacation after we sell them, and use that cash to buy some weed which we can sell and get more weed, and then…and then… I tell him they won’t let me have these meds in jail, and to stop making me laugh, because it fucking hurts. I slip one of these beautiful deep blue pearls into my mouth and we head home. Morphine Sulfate XR, bless you, as you cut quickly to the pain and make it just a grit your teeth and whistle level instead of the tearing your fingernails out one by one level. I spend most of the next few days asleep. And then I am told I should not be driving if I am taking the morphine and percocet. So with a note from the Dr. faxed to the office, the soonest I am going back to work is Monday. The next five days are fuzzy, I fall asleep randomly, sometimes with a sandwich in hand, and glasses on, or in the middle of typing a sentence. Sunday I try to wean off the morphine. My body’s response to that? You’re one crazy bitch, that’s not gonna happen. This brings us today – my hematoma is still here, my cyst is back to the size it was before they drained it, I can stay off the percocet, but my pain will not allow us to say no to morphine. And I’m waiting for word from the Dr. on what happens next. He’ll be back in the office tomorrow. The pain is manageable for now. And I keep telling myself at least it’s not cancer. And that I am grateful that at least some of my doctor’s trust me to know my body.
Thus ends the most recent chapter of Cancer, A Gift That Never Stops Giving. I am sorry for this novella, but now you’re on the same page as me, and we can wait, impatiently, together. I am headed to my bed now, to rest quietly and gear up to face tomorrow – I am applying again for FMLA, so that no matter where this is headed, I’ll still have a job to come back to. And this better not interfere with me being able to attend the upcoming adoption of one of my kidlets at work, because then I will be seriously pissed off at this nonsense. I’m not gonna let this noise interfere with the one good thing that comes out of the work I do.
It’s really hard to stay positive with life throwing up road hazards around every turn, but I keep reminding myself, I still wake up every morning and I get out of bed to clean water, and an inside toilet and electricity and food. So I am richer that most of the rest of the world. And I have cookies, so that’s just icing on the cake.
Stay healthy my friends, and keep fighting the good fight.
29 September 14 | Categories: Picture Perfect, Profound Insights, Random Rambling | Tags: amusement, anniversary, annoyances, anxiety, biopsy, buttercup, cancer, carnivorous kangaroo, ct scan, cyst, death, doctors, flying monkeys, happy, hope, insight, life, narcotics, pain, powerpuff girl, procedure, rant | Leave a comment