Ha! Tomorrow I go to interventional radiology to get my tube removed. So, ok, maybe they are referring to it as a tube change, but I am going to present a very well formulated argument about why it needs to come out. There are totally legit reasons, aside from the nagging pain and tugging hose. For example, my immune system is constantly on high alert preventing infection and trying to heal the holes in my back that don’t exist there normally. All that energy spent on fighting fungi and plagues and rare disease spores doesn’t give me much energy for anything else – I’m good for about a day a week. My immune system would benefit from a break and since my bladder provides me with nothing but happiness and joy these days, it’s clear emptying the guts from the pufferfish, was beneficial in relieving the hell of my pelvic region. So, using logic and reason, I have also deduced that my ureter is probably not being crushed any longer at this point in time, in which case, we can remove the hose from my back.
I apologize for my lack of writing – most of the last two weeks I have been horizontal, except for an afternoon in Hershey, and D4 last Friday. I just opened the computer for the first time since Friday. I’ve been subsisting on chocolate milk, crunchy Cheetos and mac and cheese – and a very delicious and fiery taco that Andy brought home from the taco truck he found. I have developed an unnatural addiction to chocolate milk in the last two weeks which must mean my body was lacking something. I had a few days where I plunged into darkness and cried endlessly and sporadically and could only sooth myself by taking long drives in the car and screaming in peaceful forests and valleys. I expect that will occur again after my Dr. visit on Thursday with palliative care. So I’m downloading some more music to my phone. And let’s not forget it’s FALL, which means things are dying everywhere and winter is coming and as we all know, this has never been a cheerful time for me emotionally, because not only is everything dying around me, the people who have meant the most to me who have gone to another place or body, left me in October or November. And then there’s all that turkey death. Dead, albeit delicious, turkeys everywhere. I hope I am up to cooking Thanksgiving dinner this year for the boy and I. Maybe we can have a thanksgiving picnic/food fight like we did when he was two. Good times.
Okay, I’m adequately drowsy now so I can get some sleep before it’s time to get on the road. I can’t have anything to eat or drink after 6 am, so I have to get up before then for my chocolate milk and toast. Or I’ll end up trying to bite a nurse when I get hungry and that never goes well. I’ll try and be more consistent about this blog. I mean I need to write more just for the sake of clearing out my head – I just have to be able to sit up to do it, and that’s been sketchy lately. Chemo never made me as weak and sick as I have been these last two weeks. I am just glad I kept the circle I infected very small because no one deserves to suffer like that. So my friends, and visitors, and passers thru, please send positive thoughts and vibes and animal/insect/fish/vegan sacrifices my way, so that the frankentube is history as of tomorrow. I promise more stories in the days to come. For real.
14 October 15 | Categories: c-monster, Philosophizings, Profound Insights | Tags: afterlife, cancer, death, depression, dying, endometrial cancer, fall, kidney, medication, nephrostemy, pufferfish, radiology, sadness, sick, sleep, tube | Leave a comment
Let me begin with this: I am not going to be making a resolution involving vodka and orange juice, because I decided that my relaxation cocktail is just that: pineapple, orange, and veggie juice with coconut vodka. It’s mighty tasty. I am having a lot of anxiety this evening (as will be discussed in the next paragraph) and I am trying to chill because I need to be bright eyed and bushy tailed for my Dr appointment tomorrow. I know I gained a little weight. I am not sure how, but I feel fluffier. I’m not stressing about that, because in three days, I’ll be so sick that food will be my enemy once again and the only thing I’ll want to eat are my go-to foods: pineapple juice, english muffin, oatmeal, yogurt and ginger beer. I want to make a pork roast tomorrow for dinner but I am afraid if I eat my friend, the pig, before chemo, I will lose my love for the other white meat the way I have lost my taste for artichokes and parmesan cheese the last time. And if I can’t eat bacon, what’s the point of living? Right now I am trying to coordinate with my brothers to get me to chemo and back because Andy is afflicted with the winter death plague, and I cannot be trapped in a car breathing his germs for an hour while we drive to Hershey. As it is, he is forbidden to be within six feet of me. And if he gets close, I pelt him with a hand sanitizer. So right now, it’s looking like I will be arriving two hours early for my appointment, and then waiting an hour or two for a ride home after we’re done. It’s gonna be a long, long, long day. But when in my life has anything been simple or easy. Enough stressing about what hasn’t happened yet, we have to review today’s adventure.
Let me preface this with this: the internet is a dangerous tool. Useful, but dangerous. Damn Penn State Hershey didn’t put my MRI results in my “My Health” account like they do with with my CT scans. How am I supposed to make myself anxious all night before my appointment if I don’t read them like I read my CT scan reports? Hmm? How can I prepare for the worst if I don’t have the info? I, of course, interrogated the nice young technician who did my MRI as to what she saw. She confirmed that there is indeed something in there, but I knew that – when I asked her if I should be prepared for an unpleasant surprise at my visit tomorrow, she would not commit. That typically means yes, I should be, because when they don’t put your fears to rest immediately, they are trying to find a way to avoid a straight answer. So we shall see. But again, I can’t worry about that until tomorrow. That is the point of the relaxation cocktail.
Well it was a lovely ride to Hershey. The fog was thick and murky on the interstate, as I tend to like it. It feels like driving in a thick cloud. I forgot it was a travel day and that Canadians would be in our country and on our roads, making driving difficult, which can also be said of New Yorkers, and also those from New Jersey. They should just stay home and enjoy their holidays in their own country/state. I had to stop and get something to eat because I was feeling nauseous, so I also took a percocet because it’s hard to tell if I am feeling sick from not eating or withdrawal, so I addressed both. I tossed back my chocolate milk and rolled into the parking lot at The Cancer Institute, realizing I would need to pick up my parking pass tomorrow for this lot for my treatments. I scurried into the building, looking like I rolled out of bed and fell into the door because I was trying to dress in things with no metal so I wouldn’t have to change into a gown. Nope, that didn’t work. I soon realized I had to go in the main entrance, and I meandered down to the radiology department, the same place that had tried to empty the cyst for the last year. I was the only one there, so I was personally escorted to the MRI room. I filled out my questionnaire about all of my surgeries and tests and radiations and chemos and skin pokings and jabbings and big giant incisions and medications and answered some math word problems about trains and wrote a short essay on what I did on my winter holiday. I signed releases I didn’t read. Then I was escorted to the changing area. It was pretty much the same deal as going through radiation, except there are no animal themed changing rooms and no waiting corral. I did get a locker for my stuff, and I actually had two gowns that covered me, instead of feeling like I always had to close some area that was exposing skin.
In typical fashion, I needed to repeat my name and birth date about 3,129 times. I had to show them my tattoos – MRI tip – an MRI will cause certain inks in tattoos to swell/itch because some inks have metal particles in them, particularly bright, vibrant colors. It’s not the best idea to get a tattoo right before you get an MRI. The technician asked me if I wanted some music during the procedure, and I said sure, but you probably have nothing I listen to – and to my surprise, she said give me the names and I will use Pandora. So I rattled off some of my faves: OWTH, Against Me!, The Go Set, Pennywise, Alkaline Trio, excited that I wasn’t going to be forced to endure One Direction, or Creed, or worse, Nickelback,
We entered the MRI room and to my surprise, the MRI machine is not so different from a CT scanner. However, there is the obvious lack of decorative stickers. I pointed this out immediately, and suggested some Brave, or Jungle Book, but no Toy Story 3, because I am still traumatized from that one. The tech said she’d check but they probably cant because of the risk of metallic particles.
Curiously enough, the room itself has a background hum that sounds like the womb sounds that my Sleep Sheep makes, which would have been soothing if not for their loudness. Unlike the CT meat slicing machine, the MRI tunnel is entered feet first. I had to get an IV started because there would be contrast dye for this one. They put some boards and blankets on my belly, and start the IV, which actually hurts at first. I told her to choose my right arm, because I was saving the left for chemo on Tuesday. Chemo tip – always go for the left arm. You will get a lot of fluids and will spend an inordinate amount of time in the bathroom – you want that right arm unencumbered. We got the IV issue worked out and that arm got strapped down. I was given a emergency call bell in case I started to freak out for the other hand. Then they put my headphones on, and I get launched into the tube. It’s a pretty small space, and I am a pretty fluffy girl. I had wiggle room but not much. The music started to play, and amusingly, the first song is an Alkaline Trio song, Blue in the Face, which ends with the line, your coffin or mine? I found this so amusing but being that I had to remain still I was not allowed to chuckle. The MRI imaging is done in time limited sessions. 45 seconds, 1.5 minutes, and then 2, 4, 5, 6, and (2) 8 minutes. Then the dye is injected, and you do 2 more 2 minute and 4 minutes sessions, and then (4) 18 second images images holding your breath. The instructions to hold your breath are supposed to come through the headphones – the tech broke into the music to tell me to follow along, except the instructions were in spanish, and she then had to just tell me what to do each time.
The actual imaging sessions are noisy. I was doing okay though, because I had music. Curiously, even though I had given her the names of the bands for Pandora, I got mostly Alkaline Trio and the Menzingers, and no OWTH for the first session – there was some Taking Back Sunday and some AFI – but no OWTH or Against Me!. This was tolerable initially, and I shouldn’t complain, because it could have been worse, like noted above, Nickelback, or even, ~shudder~ Macklemore or Pitbull. When the tech came in to start the dye, I asked her to restart Pandora with OWTH and the other requested bands – I got one OWTH song, and then it went right back to the Menzingers – weirdest thing ever, I wonder why that is? Anyway, the last sessions were the most difficult to stay still during because the machine was literally rattling. And your body gets really hot. Like it’s cooking. But I did really well keeping still, I turned on my meditative brains and pretended that I was a corpse. Of course, then runaway brain came along and I started to think about what it would be like to be buried alive, and this is as close as I hope to ever come to it. Then I started to think about all the poor people who were buried alive and what that must have been like to wake up in a box underground and be trying to claw your way out, and then the terrible realization that this is it, and you are trapped and never getting out. I then realized that I need to modify my living will to specifically state that under no circumstance whatsoever am I to be buried, or placed in any boxes unless my heart has been removed from my body or my head severed. That freaked me out. I realized then that the only suitable way to die would be drowning and then eaten by fish. Fear of being buried alive moved to my number 2 fear. Clowns were downgraded. Fire is still at the top. Again, drowning would be the only acceptable way to go.
Returning to our discussion track, there’s a lot of noise during an MRI. Banging and whirring and swishing and thunking. I did okay with most of it, the music minimized it but it still all seems to be going on by your ears, instead of where they are taking pictures. At one point it felt like the hair on my legs was being magnetized Totally bizarre feeling. It’s not constant. It starts and stops, and they tell you through the headphones when the next imaging will start and how long it will last. I only got caught off guard once with the loud banging, and fortunately, since you are in a restricted space, you can’t really jump out of your skin. I kept referring to my meditation practice and controlled my breathing the best I could, trying to relax. This is an important tip for those having an MRI. Work on your breathing. When it was all said and done, and I got to sit up, my whole body was stiff from staying still for so long. Even though the actual imaging session are short, the whole process lasted about 1.5 hours. Keeping still is a lot more work than you would think it is. As I mentioned, I asked the tech what she saw, but I also asked her why they do MRIs on a Sunday. She said they have to staff the MRI 24/7, and since someone has to be there all the time, they decided to make use of those hours by scheduling outpatient scans so they use the time effectively. There are a lot of emergency and rush procedures during the week, and it’s really stressful. Weekends are more laid back, there’s no tension and it can accommodate both staff who want to work only weekends and patients who need an urgent but not immediate scan, or people who can’t take time during the week. My tech said she actually prefers being there and doing procedures on the weekend. I have to say, it is a much more pleasant experience for the patient too because you aren’t jammed into a room of sick people to wait and you don’t feel rushed and everyone seems more calm and relaxed. There’s also better parking and fewer people in the buildings. After I regained my sense of stability, I was given my key to my locker and changed into my clothes and then scurried (IE. Walked slowly and stiffly) to reward myself with a chestnut praline latte at the hospital’s Starbucks. Twas yummy.
I took a longer scenic route back home – I had planned on going to dinner with my sharksister, Ashley, but she came down with the flu or plague or west nile last night, and we had to cancel. I was disappointed because I was really looking forward to seeing her, but we’ll have time, I have 4 months of appointments yet. We were going to go to Pho Miss Saigon in Hershey – a super yummy pho/noodle house – I still don’t have much of an appetite, but I was looking forward to Vietnamese iced coffee, which is my most favorite. If you frequent the Hershey area, I highly recommend the spot, particularly if you like pho or noodle dishes. It was still quite foggy as I headed home and was dark, so more stupid people than usual were about to hinder my ride home. Tomorrow is doctor and blood work day, and laundry. Weirdly, I need to make sure that I have a fresh blanket and sheets on my bed for after chemo – because of the whole weird smells thing, I need to have things as fresh as possible the first few days. Andy is also going to need to clean the car and quit smoking in it, because the odor of cigarettes is the one scent that makes me want to immediately hurl once I start chemo. At least I know what to expect. I also don’t have to have the nasty neulasta shot, at least not initially, so that’s a huge plus. That shit is the worst part in my opinion – the pain in your bones is as horrible as the pufferfish. I’ll have to get a picture tomorrow while I still have my hair…I figure it will be gone by the beginning of February I’ve started work on a fox hat, and I have patterns for a raccoon, panda and queen crown.
So that was the MRI. To summarize, much like being buried alive but without the bugs or dirt or paralyzing fear. Also much noisier. Not for the claustrophobic. In other news, I facebook blasted that my cancer is back – it may seem like an attempt to get attention to some, or putting “my business out there” but you know what, I don’t really care. People are naturally inquisitive – they want to know – and I don’t think this is something I need to keep private. It’s scary and people are curious. If I make it easier for someone else, all the better. With that ma petites, I shall leave you for today. I’m gonna finish my cocktail, and tuck myself in. Hopefully I’ll have more details tomorrow. Sweetest dreams my friends, and like I said on facebook, send me your good vibes, positive thoughts, prayers, animal sacrifices or good juju, I can feel it and it helps.
And don’t be afraid to ask me questions – it doesn’t bother me a bit.
5 January 15 | Categories: c-monster, Philosophizings, Profound Insights, Random Rambling | Tags: alcohol, anxiety, bald, biopsy, buried alive, cancer, carnivorous kangaroo, chemo, chemotherapy, clowns, cyst, death, doctors, flu, flying monkeys, happiness, hershey, mri, music, pain, plague, procedure, pufferfish, radiology, restless, stress, tattoo, treatment, tumor, uterine cancer | Leave a comment
While I was hanging out in recovery on Friday afternoon, I was coming up with witty titles for my thoughts post-mining. I had several. I don’t remember any. Sorry. I feel like I leave you all down when I can’t be funny. I let me down too, because no one cracks me up like me! I am quite hilarious, the nurses found the giraffe joke much funnier than Andy did while we were at the hospital.
First, let me say that in rereading my blog entries recently, I have noticed numerous typos. I hope they have not been very distressing. I do read and edit this babble before I post it. I know it seems chaotic and free-form and sometimes not even funny, but I do edit. Not very well though as evidenced by my recent writing. And down goes another career path…”editor” now lies in the heap with “famous ballerina” and “badger rancher”. Please continue reading despite the poor grammar and editing.
Second, this post will be tinged with the sorrow of tomorrow’s lost snow day. My last hope for a snow day has been dashed by the local news. It appears it will not be more than nuisance snow, with super duper frigid temperatures to go with it. What that means it I will be forced to return to wearing boots and being uncomfortable all day. So, if the weather is reading this, here’s how it’s gonna go, you will either provide snow days, or get spring going, I’m tired of having to go out and about in boots for no other reason than to prevent frostbite.
Now that I’ve addressed those issues, let’s talk about how Friday went at Hershey Medical Center. I arrived early, got ushered into a holding area, and then hustled along to the Radiological Procedure Area in the basement. First observation – the regular radiology area is not as attractive as the radiological oncology area. No fish. A fun little TV area for the kiddies. But no awesome wall of fish. There’s no cell reception in there. Wifi is free though. Andy and I both left our cell chargers in the car so the phones died fairly quickly. Turn the paperwork in, wait a bit and we are off to our procedure area. I get to have the one right in front of nurses station. They don’t know what a treat they are in for! I get into my gown and hop on the bed. Jabbing and stabbing starts. IV in one hand, poor arm trapped in those vicious blood pressure machine, but at least they give you warm blankets. Finally all the necessary numbers are recorded and I am freed from the multiple hands everywhere making sure I am human. It’s time to wait. Oh good! There’s a clock directly in front of me! I can watch every anxious minute pass by. I take some pictures and post them on facebook, and try to think of a way that I can get the nurses to let me have the cool stuffed bird at their station. And watch the clock. Watch the flippin’ clock. Then a new nurse comes to take me to the cell where they will jam that needle and probe into my side and go on adventure…but I won’t care, I’ll be enjoying sweet, sweet, sweet moderate sedation.
Moderate sedation does not mean what I thought it meant.
I ride on my bed through the halls into a room with a ct scanner in it. It better have stickers. I get parked against the wall. The resident who will be assisting tries to pronounce my name and butchers it. I joke about it. My nurse jokes about it. Resident seems nervous, and when he says “I’m going to listen to your heart and lungs”, I reply “I’m pretty sure I still have them”, he doesn’t get it. Then he asks if I understand what this procedure is. Sure do, you’re going to put me to sleep, and then, like testing the doneness of a cake, you will spear me with a needle, find the pufferfish, stab and grab it, and tell me whether or not the C-Monster has been reborn. That’s when I see his terror – no, says Dr. M.. there’s actually 4 scenarios: 1. We can’t get to it because it’s in there too deep. 2. We get to it and find out it’s an infected mass and we have to put in a drainage tube. 3. We get in, get samples and get out. 4. We get in, we get samples, we drain fluid, and get out. All could go horribly wrong and you could bleed or get sick or worse. K? Oh, and you are only getting moderate sedation – you’ll get a local anesthetic, some stuff that makes you feel like you had two or three drinks, but you will be awake the whole time. Holy shit, two or three drinks? Doesn’t he know I have an affection for hotvodkacocoas? With pain meds. I’m gonna feel every little poke. Good dog, how am I going to survive this? I try not to show fear.
Kind nurse #1 helps me get on the CT table. I guess I have to have a scan first. Makes sense. I note the lack of stickers. KN#1 tells me not to fear, the stickers are inside. I tell them that’s good because I would have to make a formal request like I did in radiological oncology. I don’t do CT scanners without stickers. Wait? What is this? I have to lie on my side. Interesting. Then they start to prep me for the event. What? I stay on the scanner the whole time? Hmm. I get oxygen, more IVs, needles, and finally large velcro straps to keep me on the table. Apparently I will be sliding in and out of the machine throughout the procedure, like some sort of amusement park ride. And I will be AWAKE. Did I mention I will be awake? Yes AWAKE.
My plethora of tubes, wires, and monitor leads keep getting yanked about as I pop up and down in the machine like a whack-a-mole machine on its side. We finally get it right and I hear the Dr. getting started. And then I FEEL IT. Because, as I mentioned, I AM NOT ASLEEP. Not that I don’t try to fall asleep – I keep closing my eyes and trying to nap, so that I am not focused on the bizarre feeling of this snaking needle meandering through my lower abdomen on its way to Location: FPF. I FEEL it find Pufferfish. I FEEL IT attack it, grab some meaty goodness and head for the exit. THREE TIMES. Okay, it hurts less than a tattoo, or childbirth or playing chicken with a lit cigarette, but it still hurts is a weird achy way. And not a good way either. Back to popping up and down in the machine. I hear the words “we’re almost done”.
Key word: ALMOST. I was about to breathe a sign of relief. Except, that was when the sharp pointy stabbing thing went back in with a tube to drain some fluid. More achy weirdness. More sliding in and out, up and down, and the promise that I am about free. I ask the KN#2, well, what’s the deal? Good, bad, don’t know? Her cautious reply is that the Dr will be in to talk to me in recovery, and usually it’s a week to ten days until there’s anything back from the pathology lab. Being quite lucid after the procedure since the medication to relax me didn’t exactly relax me, I realize that before I was strapped in, they told me that there was a pathology lab right there that would look at the samples when they were extracted to make sure they had good samples. Oh well, I will wait for the doctor.
I crawl off the machine and onto the rolling bed and back to my curtain. I try to sleep for a bit before they page Andy to come back. He really like that part. Here’s your pager son, we will page you when your mom is in recovery. So off he went to get a coffee and have some breakfast. I can’t sleep. I’m restless. It’s 11:30. They page Andy. He comes back and I get lunch. No jello. Just applesauce and a turkey sandwich and some Oreo cookie snacks. A healthy lunch. And water, I haven’t had anything to drink since 1am. Phones are mostly dead. He won’t let me watch TV. Won’t let me since the Chitty Chitty Bang Bang song. Or the Barney Song. Or You Are My Sunshine. Or the Wake Up Song (I wrote that one) Or the Carpenter’s song about birds appearing. So apparently I am not allowed to sing. So what do I do for fun? I die. Not really, just that my leads came off the monitor and it just looked like I was dead to the nurses. Who looked up and saw I was not really dead before they got those shocking paddles ready. That’s when they took away my monitoring devices so I couldn’t hold my breath while wildly wiggling my finger to make it look like I stopped breathing while my pulse was erratic on the monitor anymore. So now all I could do was swing the unattached monitor lead on my index finger around and around until the doctor got there.
Apparently, the Dr. is not coming. He usually doesn’t see the patients after the procedure unless there were complications, and I had none. I’ll find out from Dr. K. next week. Now, I’m not dumb. You always get good news right away. When I have to wait, I pretty much know it’s not a happy thing. They did drain fluid from the Pufferfish. I can feel the difference. I know I should think positive thoughts – I am – maybe not the kind you are expecting – but I am thinking I am glad I have such excellent medical care and an exceptional medical team, who I trust, and if it is malignant, at least it’s been being monitored and it’s far less serious than the last go round, and I made it through this whole nightmare once, I can do it again. Since I am not going to see a Dr., they have decided that I can be dismissed, sadly, because they have enjoyed the entertainment I have provided. Andy has been told that he can take me without supervision to the car in a wheelchair. I must not walk. They do not tell him that he must not crash the wheelchair but they do tell him no strenuous activity and I am not to shovel snow every again. In my life. Ever. Never. Don’t even think about it. (This is not medically mandated, but I like their thinking.)
I get dressed and then get in the wheelchair. Andy was a pretty decent driver. When I yelled FASTER! He complied. While waiting for the elevator he spun me around until I was dizzy. He effectively wove in and out of the slow moving people in the hospital’s main corridor, and didn’t park me outside in the cold while he got the car. I would recommend his services in this area highly. Finally I was in the car, gobbling up a loaf of Irish Soda Bread, and wistfully looking forward to the day in bed and my snow day on Monday. The snow day I am now being robbed of.
And I had a witty title already for when I wrote this entry. But it’s two days later and I’m two days closer to knowing what comes next. I hate having my life on hold. I hate it even more than being denied a snow day and still having to wear boots. I still need to go to the store even though I don’t need milk and bread now. I would like a coffee too. So it’s off to rip off the band-aid from my wound, and head into the real world. Frightening though it may be.
That’s all for now. I’ll be back sometime this week to reveal the outcome. But before I go, I almost forgot – the stickers inside the CT machine? They were from Finding Nemo. And the one directly in my line of sight? A Pufferfish. Coincidence? I think not.
Funny foot ghosts
Stuffie just out of my grasp
2 March 14 | Categories: Picture Perfect, Profound Insights, Random Rambling, Soapbox | Tags: anxiety, biopsy, cancer, cat scan, challenge, cyst, death, flying monkeys, jello, mass, nemo, nurses, pain, pufferfish, radiology, restless, surgery, treatment, uterine cancer, wheelchair, zero to hero blog, zerotohero | Leave a comment