It’s never a good sign when I go to start writing and can’t find my glasses. I mean, I can do this without them, that’s what the little magnifying glass is for, to make this shit bigger so I can see it. But I’ve been having a lot of anxiety lately and now, being unable to remember where I put my glasses is going to be added to that mess of thoughts that are rattling around in my skull.
Anyway, I’ve not been writing – not because I haven’t wanted to, because I have, but there was a 10 day stretch where I couldn’t sit up for extended periods which makes the whole typing thing a bit difficult. Like I said, I have had some serious anxiety, something I have never really had before in my life, not at this level. I know it’s related to the c-monster and the uncertainty that is part of this go round with this nonsense. I also know that writing would also help to purge some of it, and I haven’t been able to. I also realized today that I am also really angry this time, angry that I have to deal with this again, angry that I have to put my life on fucking hold because I live in a country that doesn’t believe in national health care. You see, when you have cancer, it’s not like having diabetes or high blood pressure, stuff that is serious, but manageable and affordable for the most part. If I lose my health insurance, I am fucked. I mean, I know that I can still get treatment, but not the best, and certainly not without the added stress of worrying about how to pay for it. So, even though I have FMLA, because there is no finite end of this in sight, I am constantly in fear that I will lose my job, and with it my health insurance which has thus far assured me that I will have quality care. And in my reading over the last few weeks, I’ve learned that while I cannot be denied insurance for a pre-existing medical condition, I can be denied coverage for treatment related to that condition. For example, I can still get health insurance, but they don’t have to pay for ongoing cancer treatments, as long as they cover everything else. This information adds to the anxiety. I am not going to belabor this, I just need to say that it makes me angry that human life is only valuable when it furthers a fucking political agenda. Adequate health and quality health care shouldn’t be something anyone has to worry about. But I live in America, where what you get is what you can afford. I shouldn’t have to worry about things like this, I should be able to focus on getting well but the reality is that I can’t just worry about my health, I have to worry about being able to keep health insurance so I can get treatment I need.
It all comes down to the fact that this time, the c-beast is still inside me. They can’t just cut it out and give me chemo to track down and kill any escapees. All the visualization in the world will not erase from my mind the fact that my whole life is on hold while I wait to see if heavy metal poisoning will stop these arrogant killer cells from multiplying, and hopefully they die off and leave me alone. And unless it vanishes, that shit will remain inside me, waiting, taunting me. I don’t believe I will live in fear, but it’s always going to be there, in the back of my mind. Every pain, every discharge, every weird wiggle or twitch in my body will have me wondering what is going on inside. I am angry about that. I am angry that I have to endure this again, that I have to spend 10 days in bed because I can’t sit up without wanting to hurl, and there’s nothing to hurl, because I’ve eaten so little that it’s all bile. And all of this leaves me scared; I can put on the happy face, I can make jokes, I can smile and laugh and pretend it’s all ok, but I am fucking scared to death that it won’t be, and then I feel guilty because I then thing my thoughts will create my reality and …WHAT THE FUCK IS WRONG WITH ME??? Maybe I remember that the last time I went through this I was much stronger and positive, but then maybe that was just the way memory works, maybe I felt the very same way.
So yeah, I don’t know if it’s the same for everyone who has cancer, but I lie in bed at night and wonder what I did to deserve this. Was it something I ate? Having the laptop on my lap? Being a fat cow? Negative thoughts? Thinking badly about others? Revenge? Consequences of bad decision making? Drug use? It’s just not fair. I want my life back, I want to just be the happy and carefree grasshopper that I used to be. And then I go downstairs and I see Andy lying on the couch asleep on a Saturday night and I feel like it’s all my fault he’s there because his paycheck goes to making sure we have food and electricity instead of alcohol and clubs like it should be for a 23 year old. The last place I was on a Saturday night when I was 23 was asleep on the couch, unless it was because I didn’t get home until early afternoon. And even then I was probably going to spend some money on some substance that would keep me up for another 24 hours. I accept that my teeth are shit for those poor choices, but that should be enough punishment. The poor kid works overtime almost every day. He shouldn’t be here taking care of his mother, it is my job to take care of him. It’s wrong.
I swore I wasn’t going to whine about cancer incessantly when I started writing this but it’s hard not to when your whole day revolves around whether or not you are sick or going to blood tests or appointments or wondering how bills get paid and how to keep your health insurance. I sometimes wonder if I sleep so much because I am sick, or because I don’t want to have to think. (I know it’s because I am sick, but I can’t help wondering). I’m scared and I’m angry and I am worried. I wish I could break down and cry but my stomach ties up in knots and my chest gets tight and I toss and turn and wish I could just forget for a while what day it is in my treatment cycle and forget when I have to go back. I’m 2/3 done with this series of treatments, and my numbers look good, but at my last doctor’s appointment, Dr. K pointed out that while my numbers look good, they aren’t where he wants them to be at this point, so he subtly hinted that six cycles may not be the end of my treatment. And so, the end I was keeping in sight, is no longer so clearly defined. And sure, I know many of you are thinking but he didn’t say you have to have more treatment, and be positive, and stay focused and blah blah blah. Easy to say when the tumor is not inside of you, and trust me, I remind myself of all of those things a million times a day, while I count the hours until the next CA125 test to see where that fucking number is, knowing that even if it’s improved, it’s not a guarantee. Everything is so much more complicated this time, and as a result, my mind is constantly picking apart every twinge and tickle.
And since I can’t literally kick the shit out of the monster inside me, I let other things frustrate me, and then I hate myself for that, because I am not that person. I want to be Polly-fucking-sunshine and I can’t be, even though I constantly try. And lets not even talk about disaster house, my prison during my sick days. I spent two hours today trying to do some organizing and hardly made a dent. I ask Andy to do stuff, but let’s be realistic, the kid works 12 hr days for 5 days a week, and I am not gonna wake him up to ask him to clean the bathroom or do dishes. My friends offer to come help, but I am too ashamed to let anyone in to see the disaster this house has become, and I can’t do anything myself. I feel pleased making my bed and hanging my clothes on hangers. I vacuumed 9 steps the other day, and was too tired to finish, which then made me angry that I can’t fucking do anything. I would wish the house would burn down, and let me start fresh, but that would affect my neighbors and that just wouldn’t be fair.
So yeah, I’m pretty frustrated. It will pass eventually, I’ll get to a better place but in the meantime, I’m in this dark place trying to stay all sunny and hopeful. What I really planned to do when I started to write was to write about the amazing kids my son went to school with at Milton Hershey School (go ahead, click and visit them, this will be here when you get back) and how they started to raise money for me to get my own car so I don’t have to rely on Andy all the time because right now we have one car, and Andy has to drive me places and pick me up, after he works all night. I can drive myself, but when he’s not here and has the car, I’m stuck because I can’t really walk anywhere for anything. It’s on gofundme – it’s amazing to see what some of these young adults donated – crazy – for me, and their messages – it touched me beyond belief. I only found out by accident, and Andy had no idea either. More than the money is that these amazing kids wanted to do this for me, and help Andy and I. But maybe even more touching was the lady at the pharmacy the other day when we were coming back from Hershey. I went in to pick up my “auto refill” pills, which were only partially refilled, so I had to wait. This older woman came in, she was 75, and her refill was also “auto refilled” which meant she had to wait too. We started talking, as my bald head kinda clued her in to my cancer, and she told me how she had a quadruple bypass and then had clots in her lungs and died three times on the operating table. (For the record, she also told me there was no light, and none of that nonsense all those people who died claimed to see) She was a very religious lady, and kept telling me she was testifying. When they called her for her prescription, we ended up hugging each other. As she was leaving, she shoved five dollars into my hand and insisted I take it, and we wished each other well. I was moved by how much a stranger cared about me, and how you can make a connection in the most unlikely of places, on a day when I felt like walking death, and all I wanted was to get home and get back into bed. Of course, I realized that had they not screwed up both of our prescriptions, our paths would never have crossed. Still, it doesn’t mean I am not changing pharmacies, because I am tired of their mess ups. Anyway, it was serendipitous moment that made my day.
Well I think I pretty much got a lot of my ire out in this post. Wasn’t the funniest or most reflective one I ever wrote, and totally not what I was planning in my head, but it’s good enough for me. I’m gonna try and get some sleep, since I want to try to get a few things done tomorrow. At least get a load of laundry or two washed, so that’s it for now lovelies. Be well and enjoy the start of spring. I’m gonna go spend a few hours chanting and hope it lulls me to sleep. Sleep tight.
22 March 15 | Categories: c-monster, Philosophizings, Profound Insights, Random Rambling | Tags: amusement, anxiety, bald, bears, blackness, cancer, carnivorous kangaroo, chemo, death, depression, diagnosis, disease, doctors, endometrial cancer, flying monkeys, narcotics, pain, peace, radiation, rambling, restless, sadness, sick, sleep, spring | Leave a comment
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
So, I’m trying to wean off of the morphine. I had my appointment with Dr. K. My treatment plan is this: suffer. No, really, it’s manage the pain for now, try to lose 30lbs or the weight of a medium size dog, and then try some laparoscopic surgery in the New Year. Not exactly what I wanted to hear as my doctor was stabbing me in the side saying “yep, your cyst is back and no, I won’t cut you open.” Apparently, the pufferfish is not the toxic life threatening kind of blowfish. It’s just a pest. An inconvenience. A bother. And I’m stuck with it at least a while longer. Because of where it is, and my “fluffiness”, the Dr. would like to see me drop some “fluff” to be in a better place for the procedure. He has said if he goes in and it would be more hazardous to remove it, than it would to leave it be, it’s gonna stay. If he can’t get it with a laser, I’m stuck with it unless something more dangerous grows alongside it or I am impregnated as part of an alien experiment. It’s like a baby I’ll never deliver. Again, another example of me wishing for something and getting it, but only in the universe’s twisted system of fulfilling my dreams.
So my days are now categorized into “manageable” and “unmanageable” – the pain is ever present, but there are days when it is tolerable, and days, like this morning, where it is brutally cruel and tortuous. I waited too long to take a pill, and I was rewarded with two hours of writhing around on the bed bellowing like an elephant seal and looking like a beached beluga whale. And to make is stop, or rather, dull it, I had to double up on the opiates and send myself into a coma for an hour until it was time to go to work. Don’t worry, I am smart enough to not drive on coma mornings. And every time this happens, I make a silent wish that medical marijuana will someday be the law in PA. Because I believe that much of my pain would be squelched by a cannabis brownie.
This will not deter me from the Wine and Whine OTR trip this weekend in which we shall descend on local wineries like thirsty locusts and suck up grape nectar until we tumble back onto the bus. I’ve never done one of these wine tasting trips, but I am looking forward to it. Although I believe there’s some sort of cautionary bit on my prescriptions about alcohol intensifying the effects. Also long as it’s not intensifying the pain, I should be OK.
I apologize for my failure in the witty blogging that you’ve grown accustomed to, but the narcotics dull my shine. I hate not being myself, and I hate being in pain and there’s no happy medium. But I’ve committed to myself to write my way through this, so maybe one other person who is struggling with the magnificent residual gift of the c-monster doesn’t feel insane. They give you all these pamphlets about what treatment is like and what the effects of chemo are, etc, etc. And they show all these smiling “survivors” on TV, all bright and beautiful – but what you don’t hear about is all the goodies that the disease and the treatment leave behind. I’m still having to randomly smell phantom odors (all of which are unpleasant), I’m tired a lot, my hair still tries to be curly, and then there’s this fucking stupid cyst. But there’s no evidence of any cancer, so for that I’m grateful
So since I took my happy little blue pill an hour ago, I’m nodding off as I type, so this signals I should try to get some rest while I’m in the honeymoon stage of numbness. But before I go, I should announce that in my efforts to defluffitize, I’ll be trying to eat in a healthy manner. That means no more “single serving” pints of Ben and Jerry’s and stuffing pizza in my mouth like I am the beaked creature in Beetlejuice whose head practically opened in half. I’ve asked my coworkers to punch me or knock unhealthy food from my hands at the office, so if you see me in a public space dining on sugar bombs, please feel free to do the same. I am somewhat upset that I am trying to do this during the eating season when orange kitkats, turkey cranberry paninis, and warm chocolate cookies are taunting me like tiny demon sprites around my head. And now it’s time to watch American Horror Story, because the morphine and percocet don’t give me enough weird scary dreams on their own.
Peace my pumpkins, be well.
8 October 14 | Categories: c-monster, Philosophizings, Random Rambling | Tags: annoyances, anxiety, cancer, challenge, cyst, diagnosis, doctors, fear, flying monkeys, food, gratitude, healthy, home, life, morphine, narcotics, pain, positive, restless, side effects, sleep, surgery, uterine cancer | 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