welcome to the danger zone

Posts tagged “restless

Just A Lot of Whining

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.


Sleepless in Shenandoah

Update on my new year’s resolution(s): I was unable to refrain from reading comments on articles posted on the interwebs. #resolutionfail. And this entry includes the name of the town in which I live. Let’s hope facebook doesn’t read my blog and find out.

I’m doing better. Not as insane as I was just six days ago, but not nearly normal either. I made it to work this week – three days in a row. I was in the office on Wednesday and had training Thursday and Friday. Next week I am planning to do a full week in the office, then Monday and Tuesday of the following week, and then it’s time to roll up the sleeves, pump up a vein and get down with the mad chemo party. Chemo buddy for the next adventure will be the lovely Heidi Y, and I am way to excited to be able to bring and play the Chupacabra dice game with we are there!!! Yay!!!

I’m struggling a lot with anxiety at night lately – this is new to me – I’ve never had this kind of panic/terror/unsettled feeling before. My legs are mad restless, and then as I close my eyes, all kinds of madness creeps into my mind and BAM, I am wide awake and trying to find a way into sleep. Last night I tried to meditate, listen to some talks about lovingkindness and the only thing that shut my mind down at approximately 3 am was a coconut vodka eggnog and two percocet. Yes, I know it’s not the wisest combination or something I should use on a regular basis, but hey a girl has got to sleep. I try to unwind in a myriad of ways – not a single one worked.

It’s a day later, I’m still writing this entry and it’s again 3:30am. I’m having a lovely hotcocoavodka, listening to some classical music and trying to write myself to sleep. I was going to read myself to sleep, but then I couldn’t find my glasses – until I got out of bed and settled down in the writing chair to write. I’m still having anxiety. I’ve realized that my body is also out of control with hunger lately, that too is partially anxiety. The other part is my body stocking up for the next great famine. As for the anxiety, I can feel it in my shoulders, my stomach and neck. It’s hard to be “ok” when your body is being a rebel.

There really isn’t much more for me to write about tonight – I mean there is, but I’m not feeling it. It’s like it just wants to stay bottled up inside – maybe it’s waiting for me to be funny again? To write better? To not drink vodka? Who knows, but I know that this is the best way out of my head for me. I can’t even describe how different this whole experience is this time – it’s so much harder emotionally and psychologically. I hate being a reader. I hate being curious – it turns up way more information than I am ready to handle. I know that much of what I learn is really not applicable to my situation, but it’s still now in my head. That is why I am trying to turn my intellectual pursuits in a more spiritual direction. No, I’m not begging God to heal me – not that I mind prayers, because they are positive energy that I need right now to help scour my body of this nasty annoying disease – rather I am seeking a way to center all this fear and anxiety. To find my spiritual core again – I shouldn’t freak out in the middle of a lovingkindness meditation because cause I can’t forgive myself and love myself completely while I am still blaming myself for choice I made in my 20’s that may or may not have contributed to cancer in my, well, my later life. And bam, writing that hit the crux of everything. I’m blaming myself – for my cancer coming back – was it negative thinking? Was it poor food choices? Is the laptop on my belly causing radiation to make cells grow? Is it negative thoughts? Too many sexual partners? Poor health care? Eating ice cream? Birth control choices? Hamburgers? I can’t accept that this is random and keep blaming myself, irrational as that is, that my negative thinking and bad decision making caused this and the only way out is to get back to a better spiritual core and man, I suck as a a human being.

And there it is, and now you see visually what writing this blog does for me, other than give me a place to randomly make commentary – it lets me keep picking the scab of what I am trying to bury until I make it bleed. And when it bleeds, as painful as that may be, I get to let go of a layer of self-blame and self-doubt. The other night as I was meditating, I couldn’t get to the place where I loved myself unconditionally – I know that this is an issue for a lot of people, but I couldn’t let go of the big grey concrete block keeping me from forgiving myself and being able to love the wondrous, loving and generous person I am – the creative and funny and intelligent being – the person who has a spirit of adventure and sense of magic – because all I could see was the person who made some less than stellar choices in my 20’s, choices I don’t regret, because they are the reason I am who I am and if I had made other choices, my life path would be completely different, but I still can’t get those monolithic barriers out of the way so I can love who I am completely.

~ Newsbreak ~ 4:11. One of the drunk ass neighbors on Lloyd St is making his relationship issues public in the middle of the street. I am always torn between being a lookie-lou and running to the window to hear more and just hoping the police arrive and make an arrest. I usually go with the latter, and I am tonight. I don’t understand the people of this town, at least once a night, somewhere in the two block radius of my house, someone is always in the street between midnight and five am, having some sort of argument, involving screaming, daily. The only time I don’t hear it is when I have the AC on. And it’s winter, so no luck there. ~End  Newsbreak ~

So yeah, back to my inadequate self, and my loathing of it. I believe tomorrow it may be time for a list here of my good qualities. And some clean up in this cave I call a bedroom. Some day, I will have my own studio, with a real desk, and storage for my mountains of craft supplies, and I won’t be all jam-packed in one room with it all like I am now. I wish I could apply some of my incredible life-coaching skills to myself. I am so good at helping others get their lives together, mine, not so much. Then I put off doing things until I shit in order, which I then don’t, and then I have just a mountain of unfinished projects and snakes of yarn everywhere. I just need a giant dumpster that seals itself shut after I toss stuff in it right outside my bedroom window. When did I become a fucking hoarder? When did I get so attached to my material shit?

I think it’s time to go now. Otherwise, I will start to analyze my actions and I want to sleep at some point. Sorry again for boring you with self-psychoanalysis. I’ll get funny again, I promise. But for now, I must finish my cocoa and crawl back into bed. Since I found my glasses, I will be starting to re-read “Awakening the Sacred Within” – I’m going to shoot for a book a week. For now my friends, this is it – and although boring, this entry is at least, somewhat shorter than most. We are almost one month through this winter thing! So, bon nuit mes amis. I was going to say don’t let the bed bugs bite, but for those of you in the child welfare system with me, that will simply evoke itching because we’ve all had to encounter the little critters at least once in our illustrious careers. Sleep well my friends. And remember to send those cancer killing thoughts my way. xo.

abcsleep


Magical Mystical MRI (or The Time I Got “Blue in the Face” Instead of “Trying to Breathe”)

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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.


Slice and Dice With Minions – Part Dos

Ah my friends, I have returned, later than planned, but back nonetheless. It’s early morn on Christmas eve, and I am still a little amped up from crafting like a loon as if I could ever finish everything I want to before Christmas day. As we know I am a grasshopper in all things. I did however, finish a project for the tree I have moved from project box to project box for two years now, so I’m kinda stoked. Now the tree just has to go up. Again, another attempt to get Christmas right gone awry because of the stupid pufferfish — which leads us to today’s entry where the minion encounters the pufferfish for herself in the operation remove and apparently realizes that I wasn’t kidding about the torture it was inflicting on me.

When last I wrote, I left you with a cliffhanger about how I was going to see Dr. K on Monday to discuss the future of pufferfish residing in its pouch. I hope you googled pouch of Douglas so you can visualize the pain I endured from leaving the ER and enduring the rest of the week lying on my side because it was no longer possible to sit or stand for very long after that no good horrible very bad day. Monday arrives and Andy drives me to my appointment. LONGEST hour of my life. Every bump stung. We could not get there fast enough. I am sure Andy was doing at least 80 but it felt like 40mph, and every stupid person who could possibly be on the road was on in front of us slowing us down. I get to the appointment. Dr. K is running late. I can’t sit. It hurts too much, so I am standing and pacing and squirming and just generally miserable. Did I mention by this time I have also run out of percocet? Yes, well I was out on Saturday. I have seriously pondered removing this thing myself. FINALLY my name is called. I jump on the scale, and guess what? I am down 30lbs. Since October. Being unable to eat has its benefits. Onto the exam room.

Again, no one is taking my pain as seriously as I am, even when I tell the nice nurse I am at an 8, pushing a 9 on the 1-10 pain scale. I am lying down on my side on the exam table, my blood pressure is “going to pop a blood vessel” level. I am rocking and crying and waiting for Dr. K. He will save me. He arrives. I blubber about how this is now unbearable and I cannot go on, this monster has to come out. He nods and says, yes, I agree. Finally!!! Someone is taking me seriously. He’s gong to get me on the surgery schedule for tomorrow. YAY!!! And even though this means I cannot have anything to eat or drink from now until after I am gutted, I am elated. I would not eat for weeks if it meant I was going to have some relief. Whatever it takes, I tell him, just get it out of me. I pause in my blubbering to complain about his new associate and the minions and how they wanted to keep me overnight on psych hold and how his associate should never ever use the words sympathize and/or empathize ever again because she is clueless about what my pain was like and it came off as cold and uncaring, and they sent me home in the exact same pain I arrived in. And also, please let them know I know the difference between “the pufferfish is trying to assassinate me” and “constipation”. So there.

I meet with the necessary folks to get all my surgical ducks in a row and get some sodas and water from the kind nurse Sue. She’s the best. They will call me with a time for the surgery tomorrow. No more eating and no drinking anything after midnight. Fine, what ever, just give me another ‘script for the happy opiates and I’m on my way. Oh wait, you need to go to anesthesia. No, not them, Dr. Doogie will say I have a heart murmur again. Damn. Okay fine. Whatever it takes to be released from my bonds of pain.

I go find Andy in the parking lot and give him the news. Now we have a dilemma. Do I go home, an hour away and usually 20 degrees colder than Hershey with a winter storm pending, and risk having to drive at a super early hour to the hospital in snowstorm, or do I stay in Hershey? It seems logical I stay here. I have clothes in the car since the ER trip. I have friends I could call and stay with, but with a storm swirling off the coast, I don’t want to inconvenience anyone, so I decided to book a room. I get one at the Simmons Motel which I will plug here as a very nice, quaint, clean and comfy room and a 50’s feel and a super soft bed. And quiet except for the damn train. But I am getting derailed. (see what I did there?) In the meantime, Andy makes arrangements for his friend Tom to pick me up and get me to the hospital in the morning so he doesn’t have to come down and just sit around all day. Now some may say it’s odd that I don’t want anyone with me – but frankly, it’s easier to be by yourself, in my opinion, you don’t have to make anyone feel OK, and comfort them. You can just get shit take care of. We go hang out with Tom for a while, I get my pain under control with some medication, and head back to anesthesia. I meet with the goofy anesthesiology associate – I think you have to be a bit odd to work in that department or working in that department makes you a bit odd, because she asks me this litany of questions but doesn’t put down the answers as I tell her as I find out later. She asks me about my “heart murmur” and I ask her to keep reading so she can see that I had an expensive EKG after that diagnosis, and that there was no heart murmur. Her response? Oh, right I see that now. Then she asks me about my anemia following my surgery. I tell her continue reading, so she can see that I lost a ridiculous amount of blood from my tumor and that once I got some blood bags hooked up, anemia gone. Again, Oh right, I can see that. Then she asks me about my thyroid. Again. I tell her to read ahead, and again, she sees the answer I was going to give her. It takes forever. I want out . I just want to go to the hotel and sleep until I get the call. Let me go. Please. Finally, she leaves and the Dr. comes in. She checks to see that I am still breathing and I still have a heart. I sign the papers. I get to leave. I go to the hotel and check in and send Andy on his way. All is going to well, see you in two days. We hug, and give the usually mother/son affection. I tell him, no worries not gonna die.

I find that my surgery is scheduled for noon. Oh good, I could have gone home – but hell, the room was only $50, I don’t have to worry about being tempted by food or drink because I have none, and I can just lie there, in an opiate haze and do my bowel prep. Those of you with previous abdominal area surgeries or in the medical profession will understand that this means a lot of time running back and forth to the bathroom, typically in the middle of the night. I drift in an out of pain riddled sleep, literally counting the hours until I will be rid of this nightmare inside. I finally doze off for a few solid hours until BOOM. The medication for the bowel prep sends me running to the bathroom. Now the fun starts for the next 4 hours. I get through night, and though I’d like to remain in this super soft and comfy bed, I have to go. Tom comes and picks me up and takes me to the hospital around 10, because he is squeezing me in between work, and I wait. Counting. I am all checked in and they tell me a volunteer will come get me when I need to go to the surgical wing. I am stoked because I can then get a wheelchair ride instead of having to make that long walk. I connect to the free wifi, and get down to the business of saving baby pandas from the mean dragon. I will save you baby pandas.

Noon. Gee, all the volunteers have gone home, so here’s a map and off you go to same-day surgery, ma’am. What? I have to take myself? No wheelchair. Walk? Oh fine, and I head off. (please make no mistake, I love Hershey Med Center, they are awesome and I would not go elsewhere for my health care) I get to the elevators when I encounter on of the Sons of Anarchy Pennsylvania motorcycle club members. I can tell this by his hoodie, that reads “Sons Of Anarchy – Pennsylvania.” He has a pager. He must be a MD too. Why else would he have a pager, being in a biker club? He notices my Spamalot t shirt I am wearing from the musical. He shares with me that Spamalot is one of his favorite musicals too. If only I wasn’t about to have surgery, I may have just met my soul mate, a biker who loves musical and is clearly a doctor to boot! But as my luck would have it, after we exit the elevator on the surgical wing, he turns left and I go right, and our potential love affair is over. Sigh.

At the unit, I am escorted to my prep area and given a gown and some special washing clothes to prepare. The nurse shows me the chart and tells me how to wipe down for surgery and says when it comes to doing my back, ring for her and she will do it for me. I do that and a different nurse comes back to help. I tell her what I need, and she says to open the last package, place the pad against the wall and rub up and down against it like a bear scratching its back on a tree. I look at her surprised, about to question her, but still ready to follow her instructions, when she says, “just kidding”. I laugh with her and said that I guess they have to get their fun anyway they can, and she said she was gonna see if I was going to do it, but she decided against it. I told her had she not stopped me I probably would. I hope on the bed and entangle myself in my blankets and listen to an Anxious and Angry episode on my iPod I guess my laughing to myself troubled the nurse and one comes to hang out with me and get all my vitals and shit. She hangs out for a while, and finally I am ready for the big surgery, when they ask where my ride home is. I said I am not going home til tomorrow, and she’s all – well it says here that you are going home after surgery – I look at her and say, uh no. That’s not what the Dr. said. She leaves to go get that worked out. Time check. 2:20PM. Technically I am supposed to be in the ER in ten minutes. She comes back to assure me that I am indeed staying overnight and informs me that surgery is running about 45 minutes late. I tell her it’s cool, I was a last minute add on, and as long as the pufferfish is dealt with, I will wait. I pick a movie to watch on Netflix and wait.

3:45. Still waiting. Me and another woman are the only people left in this holding area. She’s crying and whimpering, and I am am just happy that gutting will occur. 4:30. I’m on my way. Next stop the OR. I tell the operating room nurses that they better keep Dr. K focused and don’t let him mess around, I want be in and out and in recovery before the Season Finale of SOA at 10pm, so no dilly-dallying around in there. They assure me they will keep in him in line and before you know it, I am waking up in the recovery room to another nurse asking me if I want ginger ale. And this Mennonite lady in a rocking chair smiling at me. I wasn’t sure what was going on at first and then I slipped into full awareness once I noticed there was no pain. JELLO!!! I could have JELLO!!! It’s JELLO heaven. I immediately order up a few orange jellos and some water and eat like I haven’t eaten in days. Oh wait I haven’t eaten in days. I inhale the JELLO and begin to keep the nurses and the nice Mennonite lady in stitches with my sense of humor until they determine I can go to secondary recovery down the hall. The doctor will see me then. My “sister” Paige calls me and we chit chat for a bit as the anesthesia wears off. I assure her I am fine, and think about getting more jello. The little boy in bed across from me belongs to the Mennonite woman, and needs to go to the NICU, but there’s a problem getting enough people to help transport him – I tell my nurse she can go help, I have things under control, I’ll be fine. She is about to do when word comes down, I’m off to the next stage of recover and away we go. At this point I realize I still have a catheter. I am not please by this. I ask for its immediate removal. Denied.

I get settled in my room. I have some sort of inflatable bed. It’s very comfy. I have the special massaging boots I love so much on, and my phone. Rudolph the Red-Nosed Reindeer is about to start and I can have all the Jello I want, and when I am ready, even a sandwich. I make sure I am not dead, because it seems like heaven. Especially the no pain part. No pain. Did I mention NO MORE PAIN. I get a new nurse. Like all of the nurses, she is super nice. She tells me I am staying there all night as there’s been some sort of influx of patients on the Women’s Health wing and there’s no room for me there. I see all kinds of people walking the halls – they aren’t stuck with a catheter. I ask again for mine to come out. Wish Granted. I am even allowed out of bed. I get up and head to the bathroom, just for fun. I have no pain. I am so happy I can’t even explain. I jump back in bed, watch the final episode of SOA, call Andy and eventually get my sandwich. I take several trips to the bath room, roam the halls for a while and finally fall asleep around 2 am. I still have no pain. If I didn’t know better, I’d say I’m still not awake and this is all a dream.

I get up around 6 when the female minion arrives. I remind her that in the ER she said she said she would not be gutting me. I ask her what happened in the ER, because none of the nurses knew the exact details. She tells me that they went in, it was hard to get to, they just drained it and did a bunch of biopsies. I ask about the C monster due to the what I read in the CT scan and she tells me that they are pretty positive that things were normal, but they won’t know until the reports come back, because you can’t tell those things with human eyes. I ask where Dr. K is. She tells me they will be back between 8 and 9 to discharge me. At this point I am starting to think he called it in, and let her do the surgery because I didn’t see him before surgery or in recovery and now he’s sent her in here and I am not even sure he didn’t go back to Disneyland. But I’ll wait to see.

I alert Andy to come fetch me. I am starting to have pain from surgery but not pufferfish brutality. I am told to wean of the perocet first and then the morphine. I get up and head to the bathroom to produce enough pee to be allowed to go home. After succeeding in that area, I am provided with a delightful breakfast of eggs with salsa. I can’t really eat, but I try. The nice nurse who was with me through the night tells me that Dr. K and the minion aren’t coming back but I can go home. I find this odd, and now I am sure he is just a figment of my imagination, but I am going home. I get freed from all of the IV tubes and machines and dress to go home. Run to the bathroom again. When I get back Andy has arrived. I am free to go. Still no pain. It’s a early December miracle. The minion comes back with my note for work, and a pretty prescription for percocet and I am turned out into the cold. Andy and I head home, after stopping for chinese and a chocolate croissant. I am cured.

This brings us to today. The pufferfish remains. He is still under the watchful eye of Dr. K and my close monitoring of my body. There are more tests to be run, but I remain pain free. I am weaned off the morphine (yay) – I have no debilitating pain – I had my one week check up – wounds are healing very slowly, and there was a lot of bruising inside and out. My incision did not start spouting fluid like they did during the last surgery. I can eat a little and sleep a lot. I have lost 40lbs now. Things are looking okay, but I cannot go back to work until the 6th after my 4 week check up and I can’t lift things. This means no holiday baking, not decorating, and only doing things that require sitting or lying down. I drove the car to the Dr. yesterday – I am still recovering from that, but the bottom line is I am recovering and will be able to enjoy the holiday with NO PAIN.
And that my friends, it the second part of the story. I will relay the story of my one week check up at a later date, but it involves minion 2 (the male one). It’s time now for me to return to watching White Christmas and sleeping. Have an awesome holiday and be sure to savor every minute you are with those you love. Eat, drink and be merry. I know I will be when I am gnawing on the bone of my rib roast on Thursday. Tomorrow (actually today) is the annual family Christmas eve dinner. Pictures will be forthcoming and I bought a special surprise that will bring joy to the hearts of many and make the family photo spectacular. I will share that debacle with you all later. Merry Christmakwanzakuh. I hope it’s all you wish for an more.


The Minions Meet Pufferfish…The Beginning.

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.


Because Sleep Is My Best Friend

I’m rewatching the most recent episode of Sons of Anarchy. I spent most of the day in bed – I’ve been spending most of this week in bed – due to the never ending pain that writhes through my body and my days like a nest of snakes. 12 days until I have another dr. visit, and hopefully find a stop gap for this stupid pain, other that 24/7 morphine with percocet chasers. So that’s why I’m not writing much – I hate the fact that my days are reduced to whining. I try hard to find beauty, be positive, laugh, but it’s a struggle and feels so fake – but I fake it anyway, because there’s no other way through. I keep reminding myself there’s a reason in all of this, a lesson, and I think back on the last time I was pain free like it was trip to Disney. I remind myself that life is suffering, that art takes pain, blah blah blah, but right now the only thing pain is doing for me is clouding my mind and making me sleep, and a sleep full of crazy mixed up dreams that leave me wondering what day it really is when I wake.

Yeah, I’m feeling sorry for my self. But in other news, this healthy eating thing seems to be working out. And some days I remember that I actually like eating things that are good for me. Even if they aren’t cookies.

I’ll find my way back here eventually – there’s too much in the world that I have opinions about not to.

Peace and pumpkins, people. It’s time to squelch the pain with another pill.panda


 My Days in Poppyland…

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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.


Patience My Pretties, I’ll Be Back.

Never fear, I haven’t abandoned you. I have tales to tell – it’s just been a bit of celebration and whirlwind of things happening since the pufferfish was deflated again and I was enjoying the last six painless weeks, with nary the need for pain medication. That said, I’m a tad down at the moment, and needed to write the following, and though I thought I’d keep it private, hell, why not share, I mean, you’re already familiar with my former uterus.

Stay with me dear ones, I will be back to keep you spellbound with happier tales than what follows. But today, I am sad.

Joey,

I can’t remember the last time I wrote you one of these letters that I couldn’t send if I wanted to, but the sadness that lingers at the end of summer when the days are perfect but growing shorter reminds me of you. And it may be coincidence, but I keep seeing things that remind me you’re gone but still hanging around, if that makes any sense at all. I miss you. I miss having one person who knew the darkest side of me and one person who understood my innocent joy. I think of what it must have been like in the last moments you were here and if you knew you were about to leave or if you made that choice. Everything changed when you were gone.

It doesn’t seem like there’s a day here when I don’t think about you. And in my mind’s eye, we’re 20-somethings with not a care in the world, scheming, and whether we’d seen each other the day before or months apart, the world was ours when we were together. And in my mind’s eye, I remember every detail of the day it crashed around me.

I wish I could mail this letter to you like I did so many others – tear stained, or gleeful, excited, full of wonder, sharing every detail of my broken hearts and plans for the future – fat envelopes, stuffed and sticker-covered and keeping me connected to you despite thousands of mile and minutes. Stories of new adventures and days I wanted to close my eyes and have it all be over.

I know it’s a matter of time until we find our paths crossing again. I thought it could be in this lifetime, but probably the next. Just know I’ve never forgotten you my friend. And I am still mad you left me, but I understand that it was time for you to go. I just wish I could have one more hour to put my head on your shoulder and cry until you were covered in snot and slobber, and have you take the hurt away for little while. Fucker.

Me


50.5 Hours ‘Til Depufferization

I am so restless. Monday cannot come soon enough. I had to stop taking motrin last night because of its blood thinning properties, and I’m out of tylenol until later so I’ve been nibbling on percocet trying to make the pain go away. It’s not.

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In an effort to distract me from writhing about in bed, bemoaning my situation, I decided to give cleaning out my closet a go. I applied the fifteen minute rule, and actually was at it nearly an hour. I got rid of a lot of things I won’t/don’t want to wear again. There are still some things I can’t get go of including the very Victorian/gothic long black dress I bought trying to hang on to my goth past, and a crushed red velvet mini dress from the same desperate period when I dreamed of returning to my glorious youth. I tried – I event took the black dress of the hanger, but in the end, I clutched it my hands, as my opiate-sotted brain harkened back to the days of pale skin and clove cigarettes and dancing wildly to Echo and the Bunnymen, the Jesus and Mary Chain, and Love and Rockets. Sigh. I realistically know that the dresses will hang in homage to my youth, never to be worn again, the same way there’s a pair of size 5 shorts in a box somewhere from when my short-lived border-line skeletal hips slipped them on one summer day following my high school graduation. Strange the things we treasure. Now, I’m lucky if I could get them over my ankles.

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Even though the pain is still a constant ache despite the medication, the sedative effects are doing just fine. My eyes keep slipping closed and I should probably take a little nap because I’m going to head in to the den of babysnatchers to get a few more things done before I am off on Monday and Tuesday to have my procedure and biopsy done. They pushed the time back to 12:45p so a pathologist can be available when they retrieve the tiny chunks of flesh from SPFXL from snappy steel jaws that will be tearing them out of me. Of course, I don’t expect to have the pathology completed before I am released to go home, even though I secretly know they do because all they have to do is look at the sample and it’s either normal or it’s not. I don’t need to know how normal or abnormal the cells are, I just need to know one way or the other.

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Not that it really matters, because as I was driving back from Pittsburgh on Thursday night, I was on Interstate 99, and if you have never been on it, there are 11 miles of the most beautiful stretch of highway I have been on, outside of Hwy 1, aka the Pacific Coast Highway, in California. The sun had just about set, the hills were green and purple and some of PA’s tallest rounded mountains were rising above the fog that was settling into the valleys amongst the farms and random houses spotting the countryside. It was so magically beautiful, I kept waiting for it to end, and each curve of the highway just became more breathtaking than the previous one. At one point, when the sun had almost sunk below the horizon, there was this lone cow standing next to a barbed wire fence on a hill close to the highway, silhouetted black against a violet twilight and I could not even remember when I saw something so simply marvelous. If I wasn’t moving along at 80mph, I would have hit the brakes and captured it on film. Fortunately, I can still picture it in my head. And I realized, after travelling 500+ miles that day, in the car, alone with my thoughts and in silence most of the car ride, that there’s nothing to fear, no matter what happens next. In that moment, it didn’t matter if I was going to live or die, because everything is connected and timeless. Yes, I had brief reminder of nirvana, one of those glimpses of what being human is all about, and why nothing is ever lost, why we are here, and why it matters, and that whatever comes is just another lesson for me to learn. It’s all going to be okay, even if it seems like it’s not. And I’m okay with that. I forget how strong I really am, and how much I have gone through and how I am so grateful for everything I’ve endured because generally speaking, it has made me the pretty fucking awesome person I am. And even all the not so positive bits, the parts of me I don’t like, are just challenges yet to overcome. Including the SPFXL.

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So now that I have waxed philosophical for the day, I’m off to get ready to face the day and head into work to tackle a few things so I can come back after the probing and get back to the grind. Then it’s off to Presto’s 3rd Birthday Party. Have a great weekend, friends. And if I don’t check in before I’m rocking the CT scanner on Monday while I’m probed like an alien in a secret lab out at Area 51 in Arizona, send me some good vibes – especially that they have some good jello in the recovery area. Peace.


Pufferfish Becomes Superpufferfish XL

Who ever said ignorance is bliss should have a monument erected to them. I believe I would be so much happier if I was stupid. There’s a price to be paid for knowledge, and for having information at our fingertips on the internet.

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I won’t belabor the issue – my most recent CT scan (yesterday) report appeared online last night. In addition to having a ridiculously low and almost non-existent level of thyroid hormone (I knew it was low, but this was way below the low end of the measurement scale) I had the joy of reading that the former pufferfish has, in less that four months, become superpufferfish xl. That’s right, the pelvic mass that we all thought was defeated in a previous episode has not only recovered but has evolved like a Pokemon, say like a Igglybuff transforms into a Jigglypuff (see images below). It is now the size of a pink grapefruit or softball instead of a common baseball. And being that it is a holiday, and my dear Dr. K is out of the office until Monday, and probably did not feel compelled to check my medical records at midnight as I did, will not see the transformation until Monday, and they are not going to call me until Tuesday. I know my treatment coordinator saw it, because she called me about the thyroid thing, and left a message about that, but nothing about the SPFXL (Superpufferfishxl). Back to the waiting for the news.

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Of course, as is typical, I use the sacred interwebs to research this evolution. Things that grow so fast are often malignant. The only positive I can derive from my online inquiries is that there is no change in the nearby lymph nodes or other organs, which is a good sign. Whatever it is, I will deal with it, but I hate being in the no woman’s land of not knowing. I can feel it fighting with the other organs nearby for space, particularly my bladder and stomach, and it is annoying. Not to mention the pain it is inflicting by its inflation as it rests on the nerves in my lower spine and coccyx. (I should state that I love the work coccyx). Either way, it is going to be jabbed and poked and prodded with sharp needles and cutting tools, and it’s gonna mean that there’s gonna be no Riotfest in my future because I’m gonna have to take time off for hospital visits.

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And I’m scared. That actually goes without saying. To deal with the fear, I’ve been binge eating because nothing conquers fear than a package of limeade oreos, Chinese food and coolattas. Which makes me more uncomfortable. But I am letting myself have the 4th of July to wallow in self-pity. Tomorrow I’ll take an extra effexor, and get out in the world and see some babies I don’t have to take away from selfish, self-absorbed and self-indulgent adults, and remember just how strong I am. And see fireworks. The world is a better place with fireworks. Or explosions. Explosions are good too.

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Celebrate the day, my little firecrackers.

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