It’s hard to believe that it’s barely over a week since I saw the oncologist. Last Monday, I was pretty happy, normal person, albeit with a massive pufferfish exploding to new sizes in my pelvic cavity. And now my world is fucking upside down and I am angry, hurting, scared and lost. So I caution you now, this mostly fueled by the anger I have for this fucking disease and is going to be graphic, and will likely include overuse of the word “fuck,” but at this point, I don’t even fucking care. You might. I don’t. You’re not the one with the giant pee penis rammed into their vagina like a rolling pin, walking around with pee bags attached front and back because your body fucking betrayed you more than you thought it could. I am.
So yeah, there’s humor in here, but only because being fucking bitter makes me funnier. Let’s tell the story. We all know that the whore of a pufferfish is still growing in my pouch of Douglas. We all know I wanted just two more months of no treatment so I could have some fun before I got really sick again. I was dealing with the fact that the stupid c-monster wiggled around in there, sometimes blocking my bladder, sometimes causing me real pain, but things were working for the most part. I was dealing with the almost hourly trips the bathroom at night, the lack of sleep, the constant urge to pee at night. I could live with it, as annoying as it was. Until the ability to pass the pee stopped on Wednesday night. And I am going to get even more graphic here because what the fuck, I have to live it, so maybe this will help someone else who deals with something like it. On Wednesday night, the 12:30 trip to pee ended in a couple drops and about 40 minutes of cramping, cursing, writhing, crying, more cursing, wriggling, standing up and sitting down, and frustration. Sleep five minutes. Back to the bathroom, repeat. All fucking night. For those of you who have given birth to spawn vaginally, imagine that moment when you want to push and they tell you to wait, and there’s all that fucking pressure and you’re just like when can I push this monster out of my uterus??? Well that was what this feels like. I’d been dealing with a milder version of it for months, but at least then it ended in finally being able to pee. Not this time. The sun came up and I got ready for work. Usually I had no problems during the day, because the movement of being up and around would move the cyst away from whatever it was blocking, and I could be normal during the day. Not this time. All morning, nothing. And it is as uncomfortable as anything you could imagine. I google my symptoms and web md tells me I should probably go to the ER. We agree. And off I go.
Since I won’t see a Dr. anywhere but in Hershey, I make the hourish drive there. I’m doing great until I hit Hersheypark. Then my bladder, deciding it had had enough fun with me for the day, bursts like a fucking tsunami in the car without warning. And what do you do when you are pissing yourself at 60mph, and there’s nowhere to stop, and what would you do anyway, if you could, stand on the side of the road and drip? AND it’s raining. AND the get gas light just came on. I did what any normal person would do, I drove to the ER and parked the car and panicked. No blankets, no towels, not extra clothes, soaked in piss. In the rain. 200 feet from the ER. I can’t go get dry clothes at home because I would need to get gas and I can’t get gas because I’d have to get out of the car. I can’t just run over to K-Mart and get some dry things because I am soaked in pee. Finally, I try calling some friends to see if they can run to my house, get me some dry clothes and bring them to me. My friend Lori agrees to help me out and while I am waiting, I decide that I cannot sit in the car in this state for over an hour. I call the ER, and ask them if they could send someone out to get me with a wheelchair or something. They do. And I cover the driver seat with shop towels to try and soak up the mess.
The ER was awesome. They got me right to a room right away, and got me out of my pee-pee pants. I have to say that the ER staff was downright amazing. Now, my body has agreed to let me pee a bit from time to time. At first we’re just going to make sure there’s no infections or what not. I point out that I know it’s the bloody pufferfish’s fault. They do an ultrasound on my bladder and kidneys. My bladder is full. Even though I just successfully completed the attempt to urinate not two minutes before. This is not good. My kidneys look nice, but the right one is showing signs of distress, because the beast in my belly is putting a kink in the right ureter and urine cannot pass from the kidney to my bladder as efficiently. While all the poking and probing is happening, Lori, my saviour, arrived with dry clothes, and my bff Kelly came to visit and brought me a phone charger. You see there’s wireless in the ER, but no cell service. So I need to put my shit on blast on Facebook (which I’d probably do anyway) to try to get messages to the people I would usually text. And for that, I need my phone to be charged. It was like having two guardian angels in the room. All the while they were there, we’re kind of just waiting. I am getting scolded by the wonderful nurses for escaping the monitors they have on me and leaving my room. We set the bed alarm off trying to figure out how to make the back go up. We ring the nurse just to ask her if our pizza is here yet. We make their jobs fun.
Finally, the resident surgeon from urology comes in. We talk about how I was going to have a consult on Tuesday about a stent in the right ureter. I am still not sure how that is going to help the bladder issue, but I am not the medical professional here. He’s hot, not super hot, but definitely a cutie, and probably barely older than my son. Oh good, and now he has to examine me. Now, I know a lot of people say that they don’t care about how they look when they’re sick and the doctor is examining them, but I am not one of them. I am completely self conscious about being obese, with radiation scarring, the myriad of scars from laparoscopies, and my sad sad vagina. I don’t really want to look at my vagina myself, so I feel bad when others have to. And that’s sad, because the vagina and I had a lot of good times together, but that was over 20 years ago, and now, it’s just another body part to betray me. Cute Dr. Brian gives me some options – get a catheter and come back Tuesday for the stent, consider just getting a nephrostemy on the right kidney today, or next week, do nothing, or just get a catheter. I say we should just try the stent, and then see what happens. He goes off to consult the attending, I mentally try to remember his full name for my friend, Ashley, who needs a rich doctor husband.
In the meantime, Kelly and Lori have to leave…it’s becoming late and it doesn’t look like I am going anywhere. Nurse Kristen tells me they are just waiting on urology. Dr. Brian comes back and says, “Hey, I forgot one option, we could admit you and do the stent in the morning!” I like that option. I’m getting a catheter anyway because they will need it for surgery, and Dr. Brian initials my right belly with his purple sharpie so they don’t screw up and put the stent on the wrong side and he’s gone until the morning. Nurse Kristen brings in some helpers to do my catheter, a nice young lady, and another cute male nurse. Oh fuck yeah, bring on the vagina/body image shame round two. Kristen tried to put in the catheter, but it won’t go in, the male nurse is just hanging back and Kristen and the other female nurse go back and forth, trying to jam this thing inside and it’s not going. Finally, they ask the male nurse to do it. He manages to get it in the urethra on the first try, and I breathe a huge sigh of relief that that inhumane torture is over. Or is it? Then they start an IV. The first bag is fine, until the vein blows up and now we are on to the other arm. All this time my blood pressure is through the roof because I am in pain, terrified, and don’t want a hole in my kidney. I break down once with nurse Kristen, and once again when Dr. Brian comes back to check in about tomorrow’s surgery. Kristen puts the IV bag on a hook in the ceiling so I can no longer get out of the room. I am trapped until I am admitted. Five minutes later they come to take me to a room; then immediately cancel it, because they now can’t take me to that room. I remain in the ER.
I have to say that Kristen was awesome when I was crying and sobbing about how this is so unfair, that I have plans for the next two months and how this was not supposed to happen and then cracked up when I said that I didn’t even get any of the good side effects of cancer like losing weight. Not me, my appetite is just fine. Then she said that patients like me are the reason she is a nurse, and that she was grateful to me because sometimes she forgets why she does what she does, to be there to comfort people when they are scared. She said she wished all her patients were like me, and she just held my hand. I don’t often say things like this, because I’m not gonna lie, I have some unresolved shit with my dead mother, but in that moment, it felt like my mom was there trying to make me believe it was going to be OK, because my mom was a nurse too. I was so grateful to Kristen that night, and even more so when she tried to find me jello and could only come up with two vanilla ice cream cups which became that night’s dinner. (I also had a turkey sandwich, later).
Pause here for a breaking funny story:
Andy comes in after his shower, and I tell him that Urology won’t even see me until September 14th, which means I can’t go to Riot Fest or the Whoopie Pie Festival, because there’s no way I can be up and about with the giant pee hose stuck in me for a drive to Chicago, as I am only comfortable standing or lying down, he does what Andy does best – he offers this solution:
“We could get a u haul and attach it to the car and throw you in it on your back, and punch some holes in the side so you could breathe back there or maybe get you an oxygen tank.”
How can a mother not be incredibly proud of such resourcefulness?
Back to the ER now. So the evening wears on – I am being admitted but who knows when? I am now forbidden to eat or drink after midnight as I will be having general anesthesia for the stent procedure. I suck down all the water I can before I become gremlin-like. They pull my IV off the ceiling and put it on an electric pump. I get a new IV in the opposite are because the other one is swollen like a bad molar. Around 2am, I am being moved to a new room. It’s all the way at the end of the hall of a new section of the ER that I have never been in before. It’s dark, and it looks like the holding cell for psych patients at our local ER. Not the psych hold thing again I hope. But in comes Nurse Dan. Again, a handsome young man who will probably take a look at my hideous nether regions. More anxiety. The way they have my IV inserted in my arm, every time I move I set off the alarm on the pump and Dan has to come running. He kindly asks me if there’s any possibility of being pregnant. I snort, and say nope, no uterus. He asks me my favorite question “when was your last period?” I proudly state 2011. When I answer my fifteenth interrogation of the night, I try to sleep. Only to be woken by some maniacal woman down the hall screaming at 5:45 am that it’s her health choices and she’ll make them and then screaming for Dan to get in there. Poor Dan.
Finally cute Dr. Brian and his attending and some other medical minions come to see me before surgery; I tell them that I thought it over, and if they cannot place the stent then do what they have to make my kidney well, and if that means nephrostemy, then that’s what it is. They are glad to hear this. And I am whisked off to surgery. When I wake up in recovery I demand jello, and discover they could not place the stent. Nephrostemy it is. That will come later. That one is an awesome “twilight” procedure, which means my ass will be awake. Oh fucking yay. Fortunately, that does mean I can eat jello. And drink water. No food, but at least there’s jello.
In between procedure one and two, I am taken to the second stage recovery from same day surgery. While I am there, the kindly nurse gives me some IV dilaudid/fentynal to help my pain. It brings me joy. Then two minions from gynecological oncology come by to see me, and tell me Dr. K is out of town, but they will see his associate this afternoon, and she will probably come over this afternoon. When they tell me who that associate is, from my drug fueled fog, I become lucid enough to tell them “don’t bring that bitch here, I have enough stress going on without her lack of bedside manner to make it worse.” The two minions stared at the sudden transformation from my happy cloudy self, to the alert demon before them now. I tell them she tried the put a psych hold on me the last time I saw her and I don’t want her near me in my present state. I will wait til Dr. K returns. I thank them for their time and they leave, and that is the last I hear from gynecological oncology during my stay.
Around 3pm, I head to radiology for the nephrostemy. They give me some meds to relax me, and some local anesthesia in my back. Neither eliminates the stress of what’s about to happen, the pain or the anxiety. I am lying face down on the table while they drill in my back to get to my kidney. After a few false starts, they hit the bonanza, simultaneously finding the only spot in my back that is not anesthetized Screaming commences as they try to get the pain under control; the pain subsides, but I am shaking so hard from the pain I can’t keep still. Somehow they manage to get the tube in and I am eventually returned to recovery. More pain meds follow.
Andy and Tom and my friend Ashley who left me to work for the Governor’s Office all come to visit me. I finally have a phone and a phone number and Erica and Paige call me to talk to me and it between my visitors and callers I feel pretty good and have not had any time to focus on the fact that in less than 24 hours, I have gone from happy-go-lucky cancer girl, to girl-with-a-tube-in-her-kidney-with-a-fucking-giant-cyst-that-is-causing-complications-forever. After everyone leaves, I nibble the snacks Andy and Tom brought and enjoy the flowers that Ashley graciously shared with me. I watch TV. I find that new pee bag became unplugged from its hose and soaked me and the bed. We wash, change and I get back into bed. More pain meds. Dr. R from urology comes by to say he’d like to remove the catheter as he doesn’t want me to have to go home with it. He says they will take it out at 1 am, and if all goes well, I’ll go home in the morning. I get some dinner, a delicious meatloaf and mashed potatoes and fresh green beans. No jello, but a delightful lemon sherbet. When 1 am rolls around, they finally remove the catheter from me. Liberation. I can finally get out of bed, and discover that my bag leaked again. I am not thrilled. Then I discover when the nurse’s aide pinned the bag to my gown the last time she changed it, she put the pin directly through the bag, and not where the pin can safely go. Now we need a new bag. We get things in order, I get to use the bathroom and actually tinkle on my own in one of those awesome “hats” and I try to get comfortable enough to sleep. I now have the IV in the back of my hand (location 3) it’s hard to find a position in which I am not kinking something up or cutting something off or being speared in the kidney by a hose. It’s a fucking circus.
Nancy, the nurse’s assistant or patient care aide I think is what she’s called, is a talker. I had her care for me back in December when I had the laparoscopy. One son is a genius, and is an aerospace engineer with no common sense, who now wants to be a lawyer, and her other son, well he’s just normal. Her husband had his arm torn off and reattached and when he’s grumpy, he makes her grumpy. She has a migraine but what can you do, you have to come for work. She cannot get over the beauty of the sunflowers from Ashley’s yard. She’s never seen anything like them. She’s loud and funny and talks non-stop, which isn’t helping with the sleep. I tell her I would like her to take the flowers when she leaves, and enjoy them, and she is overjoyed and begins to tell me how she is going to dry them and get the seeds so she can plant them in her garden next year. I finally fall asleep for an hour or so, and then the early rounds start – the urology minions first, then the radiology team. I am free to go, once I can get Andy to answer his phone. Andy also has to be here to learn how to clean my tube daily and to change the dressing – they offered to show me how to do it, but um, yeah, it’s on my BACK, and I am not an octopus with multiple arms nor am I an owl who can turn my head to see my back. I eat my breakfast and wait. I put the clothes on that Andy sent down with Lori. His picks were from the “these clothes are being thrown away” pile, so I put on the shorts with no elastic and decide to wear the shirt I came in with instead of the too small one Andy packed. Finally, sleepy head gets there and we learn wound care and off we go.
I get home, feel pretty good for having an hole in my back. I sleep most of the day away, until 11pm, when the no peeing thing starts all over again. Long story short, it was a horrible horrible night. I tell Andy I need to go to the ER, and I pack extra clothes and a seat cover in case of accidents and off we go. About ½ way there, my bladder lets go with no warning. Good call on the seat cover. I tell Andy to take the back way to Hershey because there’s a portapotty at one of the trail entrances on the state game lands. We get there and to my surprise, it’s been upgraded to a real national park bathroom. As gross as a portapotty but larger. I change and we resume our journey. Unfortunately I also have another bladder eruption as we are turning into the driveway for the ER. How can there be so much pee! Andy has to go get a wheelchair and bring me in that way again.
You would think the fun was almost over here wouldn’t you??? I would. I have to give an urine sample. I try to do it in the bathroom, and squeeze out a little. I go back to the exam room, and guess what? Bladder eruption, but this time I am on one of those pads, so it’s all good. While waiting for urology and the er docs to come by I discover that I can pee, but only if I am sitting on a fucking diaper on a flat chair, because it pushes the cyst back up into my body and lets the urethra do its thing. When I try to use the toilet, it rolls down like fucking boulder and shuts everything off. I share my discovery with the Dr. who says it sounds reasonable but not a long term solution so guess who’s getting another catheter. It is at this time I learn that the reason I had such discomfort with the last one was because they used a latex catheter and uh, yeah, I am fucking allergic to latex. Nurse Sara tries her best to gently insert this one, being herself a vagina owner, and knowing how brutally uncomfortable this is. She can’t get it in; Urology is called, and they will come do it. Two doctors arrive, and no matter how hard they are trying to be gentle, they don’t own a vagina, so they have no idea how ridiculously painful this whole process is. Finally it’s in, and my bladder starts to empty. Despite the number of times I managed to empty my bladder using the chair method, it’s still pretty full. They are going to do one more urine analysis and then I can go home. Andy has already left for work, and my beloved Paige and baby Kenny have agreed to come get me. They tell me I will have the catheter in for a week or so – then they will take it out and see if I can just intermittently catheterize myself on my own daily instead of having the giant pee snake invading my vagina. They will call me with an appointment. Nurse Sara comes in to show me how to take care of this set of tubes on my own and then shows me that I also get a snazzy “daytime bag” that I can strap to my leg when I want to go out and about. OOOh, a fancy pee bag accessory – IT’S A FUCKING PEE BAG – not a clutch. I laugh because I doubt that I’ll be all that concerned about the size and shape of bag when there’s a fucking gigantic garden house dangling between my legs. Sara leaves me to the business of figuring out how to dress to accommodate the gargantuan hose and bag. When Paige lets me know she’s close, I ask Sara if I can leave, and she gives me the okay…at this point I couldn’t bear another minute after listening to the dude in the next room grunt for two hours while someone else kept their finger on the call button almost the whole time I was there. I’m outtie.
Not so fast, says the Drop Dead Fred look-a-like at check out. You must check out. I tell DDF, no, I don’t, I was dismissed by the ER. Yes, yes, you do says DDF. He demands my checkout papers. I don’t have any DDF, I tell him. DDF asks if I have any papers from the ER, I say yes, and he demands I turn them over. So I slam my pee bag on his desk, and open my backpack and hand him the papers. DDF peruses them and says, um, yeah, you don’t have to check out. I grab my pee bag and leave in a huff.
I keep falling asleep on the way home, because I am exhausted. Paige and I hit Wendy’s because the last thing I ate I can’t remember. When I get home, pop a muscle relaxer, have some herbal meds, empty the pee bags and pass out in sweet sleep. When I wake up in four hours, the pee bags must again be emptied, as they fill quickly when you sleep.
I’ve since named the pee bags. Tweedle Dee and Tweedle Fucking Dumber. I carry the big one around in my backpack, the little one’s pinned to my side. There’s no getting comfortable, only being able to tolerate the positions. It still feels like having to pee all the time. Like there a rock stuck in my vagina on the end of stick. And while I am grateful for being able to sleep for more than 1 hour at a time, I still have to get up and drain them at least twice a night.
This is my new reality, and why I am so angry. Like I told my nurses, I knew something like this would be down the road, I am not a pollyfuckinganna. I just wanted those last two months, the two months when I could feel like a normal human, not a fucking cancerous blob, who will just sit in bed and wait to die. I wanted quality over quantity. This is not quality. This is a nightmarish hellscape that I am not waking up from. Yes, it could be worse, which is easy to say when you aren’t the one with the pee bags. I know it could be worse, and I am grateful that it’s not. But today when the Urology dept called for my follow-up and said my appointment to determine if they would remove the catheter would be September 14th, that was the last straw. No Riot Fest. No Whoopie Pie Festival. No more swimming. No more baths, no more hot tubs. Just fucking days of emptying and cleaning pee bags, self medicating and sleeping because there’s not much else I can do. I can’t even go to the beach because SAND. I am not happy. I am not.
So before you try and turn my frown upside down, please understand I need to be angry, I need to be able to feel sorry for myself. I need to say that cancer sucks, and it’s a horrible insidious disease, and that I have every right to be upset that my life is completely different today that it was last week. I don’t know what I did in a past life to deserve this, but when I look back on everything I’ve gone through in my life, I kinda feel I’ve been cheated a little. This will pass in a few days I know, but for now I don’t want to talk anymore about it, or pretend my world is a happy fairyland where unicorns play candyland with talking bears. I am grateful for all of the concern, and love, and caring, and well wishes, and prayers, I truly, profoundly am, but I am still coming to terms with what is reality.
And with that my friends, I am going to go have a nice shower with TD1 and TFD2. Good times. I’ll be back to my normal self eventually.
26 August 15 | Categories: c-monster, Philosophizings, Profound Insights, Random Rambling | Tags: annoyances, anxiety, cancer, diagnosis, disease, dying, endometrial cancer, fear, flying monkeys, friends, nephrostemy, nurses, pain, procedure, treatment, uterine cancer, uterus | 3 Comments
Go get your tissues, cuz it’s gonna be sad. Sorry. I really didn’t want to write this tonight, but my brain won’t let me sleep despite all my efforts to turn it off until this is in black and white on my screen.
Today was doctor day, in the new offices in the Cancer Institute. Heidi came to pick me up and take me to the dr. Andy wanted to know if he should come, but I told him no, he didn’t need to stay up all day and just get cranky waiting and get no sleep. The news would be the same whether he was there or not. We got there kind of early, and then waited about an hour after my appointment time before I was called. By that time, my “relaxation” medication had worn off, so I was clear and lucid for the visit. Damn.
There were an alarming number of cranky people in the waiting area. It’s not like the Hope drive office, where all the patients were women. My dr.’s new clinic is in the same area as the infusion suites and the labs in the cancer institute. It really only makes sense because he’s not just the gynecological oncologist but the surgeon, and the Hope drive offices were alll the way across the hospital campus from the hospital and the Cancer Institute. But it’s change, and change is uncomfortable. And there were really sick people there. And people who just wanted to get blood drawn. In my head, I am trying to guess the type of cancer that has attacked them. I see some women in wheelchairs and on scooters, and not just for fun, but because they need them, and I think…I don’t want this to be me.
When they call me, the nurse takes Heidi and I back to an exam room. At least she didn’t ask me when my last period was. She uses the medieval torture device of an automated blood pressure machine to take my blood pressure which registers at a scary 150/110 or something. Not normal and not good. I’m feeling fine, so I blame the machine. Those machines always get it wrong. Now, the scale on the other hand, it got it right. Even better than right, because after slurping down a pint of Ben and Jerry’s and tortellini sandwiches and chips and peanut butter m&ms and Chinese food and Taco Bell the last few days, my weight was actually down, instead of up. I am friends with this scale. After the nurse, in comes a minion. Very nice minion, but very tired. I tell her my story, I tell her I’ve seen the scan, I know it’s bad, and I want to stop taking tamoxifen because I hate hot flashes. I also tell her to tell Dr. K no chemo until November if that’s the option. She asks me if I get nauseous to which I respond, no, I smoke weed, there is no nausea. She laughs at my forthrightness. I tell her Dr. K knows, he just doesn’t put it in the medical record. We review meds, blah blah blah.
And in comes Dr. K. Wellm he actually tried to kick the door in, claiming he tripped, as he was coming in. I ask him how bad it is, and then it gets all kind of surreal. I can see on his face, no bueno. He says it’s larger; I say I know. He reads the report to me, which if I read once, then I’ve read 1000 times since last Monday. I get the feeling he didn’t really look at it closely before I got here. I can understand that when you see 22 patients in 3 hours, sometimes you aren’t as prepared. He’s really bummed, he says he feels like the grim reaper. I tell him I know it’s bad, but like, what are we talking here? I asked if they could drain the cyst again because it’s bigger than ever, and while it’s not causing me more than a 5 on the pain scale, it’s uncomfortable, like an alien baby. Or hey, a pufferfish. He said they can’t do it in radiology again because inserting a needle in to the cancer ball would create the opportunity to spread cells as they pull it out. I can see he’s struggling with this, and I feel bad – I don’t want my doctor to feel so horrible about this. He says he’ll make a referral to urology and see if they can insert a stent. Then we talk a little about options, I tell him I’m down to do chemo again but not until November. I have too much to do in the next two months. He’s okay with that. He wants me back in a month and he’ll come up with a plan. Maybe a trial. Heidi asks him some questions about chemo and stuff, and he says that we can try some other flavor of chemo since the last one didn’t work. I am just happy that he said to stop taking that fucking tamoxifen.
There was no avoiding asking the big question though, and I asked him about time, and how much I have left…he didn’t want to say. He said I would make the OWTH show in September. I said good, but how long, ball park, and again he hesitated and I said I just want to know if I am going to have another summer. I’d like another summer. And bless him, Dr. K. said I think I can get you another summer. And then he hugged me hard. Like really hard. Like the kind of hard that says I wish I could have done something to keep this from happening to you. I like having a Dr. who cares.
I see the urologist next Tuesday. They are filling out FMLA paperwork for Andy and I. I see the Dr. again on September 21st. I was super proud of myself for keeping it together during this visit. I joked. I tried to scoff at the spectre of death. My voice only got wavery once. I checked out without tears, and with another prescription for oxycodone. I even kept it together having a drink with Heidi, and at dinner and the ride home. I almost kept it together when Andy came to unlock the door. Until I had to say “he thinks he can get me another summer/” That’s when I lost it. I couldn’t look him in the eyes. No one should ever have to tell their child that they aren’t going to be around much longer. And every unseen milestone keeps running through my head. I can’t even write about that because it breaks my heart and tears up my stomach. If I have one regret in this life, it will be not be around to see him live his life.
Then the texts – maybe I should call people, I guess, but I don’t want to be all sobby on the phone. Crying isn’t going to change it or cry the cancer out. Mike and Amy and Alan know. They’re the only people in my family who need to know this right now. My dad will be 87 this year, I don’t need him to die of worry about this; he already spends too much time stressing about my sister and her drunken idiocy. And while I am very public about this disease and my life and shit in general, I reserve the right to be the one who speaks for me. I don’t want my siblings to share this with people I don’t know so that people are stopping me on the street. Or asking my friends.
And now it’s blogosphere official. The stupid psychic was wrong about this one…unless something magical happens. I need to get on that passport thing with my next paycheck and start saving for that trip to Ireland. I’ve also got to start getting rid of a lot of things. Physically and mentally. Am I scared? Yep. Will I get through this? There’s no question, good or bad. Even with everything that is uncertain right now, I feel weirdly peaceful that the other shoe had dropped. Weird I suppose.
Anyway, I was a bit peevish yesterday until I got kind of fuzzy and was distracted by a puzzle and did most of an entry about what you should and shouldn’t say to someone with cancer, but it was a touch bitter. Here’s the gist of it, without all of the snark:
- Please don’t ask me how I am unless you have the time and desire to listen. Most times I will say “fine” because I know you are just being polite and I don’t want to burden you, but sometime, I may feel I need to talk about how I really feel. So, if you don’t really want to hear about how I am, just tell me I look good today, or Happy Wednesday.
- Don’t get all weird when I make death jokes or talk about dying. If you are my friend, you know I have always been a touch far on the dark side. I only have two choices for how I will deal with this fucking puffermonster: laugh about it or cry about it. Laughing feels better and doesn’t require tissues, so expect me to joke about it. Don’t tell me we need to talk about happier things – this is my reality and I need to talk about it or joke about it now and again. Otherwise this giant dead elephant is in the room. (see what I did there?)
- Don’t worry about having the right words to say or even saying anything. And don’t try to be positive about it all the time because cancer sucks, and while I try to stay positive, there are days I am very angry at my body and this c-monster. It’s okay to say it sucks to me. And if you can’t find the words, a hug, or a smile, or a fist bump will do. And you don’t need to be sorry. You didn’t cause this. I have a theory about who did cause it but they’re dead now, so it’s not like I can exact revenge. But don’t let our paths cross in the next life. I want every day from here on out to be about laughter and fun. Fun which will involve death jokes.
Finally, I know this is why you all stuck around…there’s an Indian Restaurant in Hershey that opened up on Fishburn Rd called Khana Indian Bistro, and the food was fabulous!!! Very fresh and well prepared and reasonably priced. It’s BYOB, but you can bet that the new highlight of driving to Hershey for medical appointments will be take-out Indian food. If you down there, check them out. The green chili naan and lamb Xacuti were excellent. Service was great, very nice people. And there appeared to be other Indian people there as patrons, which is a good sign since they would be authorities on Indian food. So go there, or if you are in Hershey, text me and ask me what I want you to bring me for dinner. Ha ha.
It feels like typing this drained me, or the stress of today just subsided, or that last oxycodone and “medication” are working but I can barely keep my eyes open. I guess I’ll be writing more often to share the tales of my urology appointments, I know, I know, you can barely contain yourself. Thanks for reading and hey, feel free to use the comment section on the blog, I like to know who was here. Sleep tight muffins!!
18 August 15 | Categories: c-monster, Profound Insights, Random Rambling | Tags: afterlife, anxiety, bear, cancer, chemo, chemotherapy, ct scan, cyst, death, diagnosis, disease, doctors, flying monkeys, food, malignancy, pufferfish, restaurant, surgery | 12 Comments
It started out like a good idea. I wanted to post a positive, inspirational quote in the FB group of quotes I started. So I googled. I’ve been struggling with the idea that this cancer came back to teach me a lesson – and what that lesson could be, so I thought, hey, why not a quote about dealing with the lessons taught by difficulties. Had I known that I would have to sift through a bazillion quotes about how I should turn to god in all this, I would have just written my own. As I’ve said before, I am all about people believing in whatever gives them comfort in their heart. Yet, I still get frustrated as hell by the idea that for me to get well, I have to have faith in a god. I don’t. That doesn’t mean I don’t want people to pray for me if that’s what they believe in, because positive energy is good energy in whatever form it takes, but please don’t tell me to put my trust in something I don’t believe in.
That said, the other day when I was thinking about dying, which I do a lot these days, since it’s not something that I can just put aside, I thought for a minute that I would get to see my beloved friend Joey again when I am dead. Then I though, oh shit, I will also have to see my mom. That’s not gonna go well. Ick, and a bunch of ex-boyfriends. Then I remember that we are all energy and no one is really gone anyway, their just a different type of energy, so the “dead” are always with us, just not as we remember them. Then the snowball started – all death related questions, so I thought I’d share a few for you to waste a few hours pondering:
Catholics are taught you are going to purgatory when you die, then you have to atone for all of your sins until you get to go to heaven or hell on judgment day. Also, the unbaptized and sinless get to go to limbo to hang out until judgment day too. So, if that is true, why do we pretend that when someone dies, we have an angel watching over us? Isn’t that like a lie? And where in the bible does it say that you get turned into an angel anyway? I thought the bible was pretty clear that angels are angels and humans are humans and never shall the two interbreed, or HELL. Not that I am worried about this for my own self, but I just wonder about it.
Another catholic concern: If on judgment day you get restored to your perfect human body, if you are going to heaven, which human body is it? Because I would like the one I had at 19. I was really happy with that one. I don’t want this year’s version. And, if you get the body you want at a certain age, and you are trying to reconnect with someone in the afterlife who never knew you at that age, how will they know you, and what if they choose an age when you didn’t know them, then how will you ever find each other and what if one of you is 19 and the other person’s perfect body was at 72, would you still be friends? Think about that. And if you get to pick the age of the body in the afterlife, why even bury dead bodies, because pretty likely you don’t want the one you died in. Unless you were 19. And if you are going to hell, wouldn’t you just get to keep the crappiest form of your body there was?
And why don’t we put wooden crosses at hospitals everywhere the same way we put wooden crosses at crash sites? I mean people die there every day. And at home. I just don’t get it.
Now that I’ve got you thinking, I’ll move on.
I’m doing okay. It’s almost 3 weeks of the tamoxifen. It’s not bad, except for the pimples, nausea, and hot flashes. And now, weight gain, or at least bloating. As if I didn’t have enough weight already. I am trying to figure out if I am dealing with the diagnosis okay or if I am depressed. I’m having pain again, which I manage the best I can depending if I am at home or at work. I am trying to stay off the opiates as long as I can. I feel like I am in limbo now until August, and wish I had a personal CT scanner so I could follow the progress of the ol’ pufferfish myself. I know it’s gotten bigger, because I can feel the changes in my body, and how it impacts my stomach and intestines. I just want the other stuff to disappear, and I wonder if it keeps growing, will they be able to drain fluid from it like before, or am I just going to have to suffer from it? I don’t like suffering. I don’t do well, even though I have a particularly high tolerance for pain. So I just need to know what’s next.
I am not sad. I’m just lacking motivation. There’s a lot of things that go through your head when you have a very uncertain future. A few weeks ago, I was reading an article about being less materialistic. It said before you buy something that you want, ask yourself will anyone want that when you are dead. Amazingly, it really limits the amount of useless shit you buy. Like before I buy another ball of yarn, I say what is Andy going to have to do with the unused crates of yarn you already have, for all the projects you were going to make and haven’t? Then I don’t buy it. It’s morbid and useful all at the same time. So if there’s something of mine you want, better call dibs now, because who knows what will become of it later.
It’s not that I don’t think there’s hope. Because I do. I just have lived my life with preparing for the worst and being pleasantly surprised when the worst doesn’t happen. And if it does, then I was prepared for it I just don’t want to be a fucking Pollyanna thinking that nothing bad will happen, because ignorance is not bliss. I still envision this annoying beast inside of me shrinking and disappearing, I drink the tumor tea, and chant healing sounds. I just don’t want to think that I can go on living like I have all the time in the world. I don’t and none of us do.
I went back and forth on the idea of a bucket list. I don’t like that cliché, but I made a list anyway – it’s pretty short, because I realized I did a lot of the things I wanted to, and the rest, well, either they don’t really matter in the grand scheme of things, or I put them on the list. Mostly, I just want to spend time with people laughing, (which is why I spent the entire weekend alone in the house, medicating) and just hanging out. There are really only three significant things, in addition to my 1000 books read plan, flying in a fighter jet, and do a couple barrel rolls, and maybe a loop, go to Ireland (with a side trip to Stonehenge) and get a van and drive cross country, hitting up all my friends in different states as I make my way back to the west coast. Oh and get a passport. I still haven’t actually gotten around to that. I do have other plans as well, but they aren’t “bucket list” per se, just stuff I am not going to put off doing any longer.
Anyway, this was kind of random. Maybe because I had a lot of pain this morning and I treated it. I also thought it was Father’s Day today, and called my dad to wish him greetings, only to have him inform me it was next week. Andy and I are going to see Against Me! next Saturday in Lancaster, and hopefully my shark sister and her husband will join us, and we can finally get Himalayan food before the show. As for now, I suppose I need to go through my washed clothes in the dryer so I have work clothes for this next full week of work ahead of me. For the record, last week I worked on two case dictations – 41 pages of typing and over 50,000 words total. And only 7ish cases left to go. So be well my friends, enjoy your Sunday, and hope that the next time I blog, I make sense. Be well.
Oh, and you should read this article on impermanence. Here ya go…
14 June 15 | Categories: c-monster, Philosophizings, Profound Insights, Random Rambling | Tags: afterlife, anxiety, bear, cancer, carnivorous kangaroo, chemo, chemotherapy, ct scan, cyst, death, depression, diagnosis, disease, doctors, endometrial cancer, fear, flying monkeys, malignancy, pain, peace, positive, sadness, sick | Leave a comment
Well, well, well.
I noticed from the upswing in hits on the blog that people have been anxiously awaiting this blog entry. It’s certainly not one I wanted to write, and it took a few days for me to get my head around the news from the Dr. and actually sit down and write. Mostly I have just been lying in bed, super-high on narcotics and whatever else is lying around, trying to pretend that none of this is happening. Do you think just once, my body and mind could cooperate? Just once, for a few blissful hours of mind and body numbing peace. No fucking way.
First, I couldn’t get numb enough. And believe me I tried. But then things kicked in and I was all sorta fuzzy warm and mellow and just kinda caught in that sweet spot between sleep and awake where you can just lie there and not care. Until the pain started. Then I had to revisit my dear narcotic friends, and a few Advil just for good measure. Next thing you knew, I was asleep. Well, for two hours anyway, because my increasingly smaller bladder had me up stumbling to the bathroom every two hours, as in the new normal in this house. And of course, I need to drink a lot of water, so that fun never stops. But here we are, Sunday morning, almost noon, and I am enjoying the bitter turmeric tea and encouraging it to kill cancer cells as I type.
I suppose I should reveal the news from the Dr. I have already had to text or tell a bunch of people, and first let me say, the words I hate to hear are “I’m sorry” – I know you are, you don’t have to say it. I also hate the sad look. So, if you can spare me any of that, it would be awesome. I am not going anywhere yet, unless the Tamoxifen gives me a heart attack or embolism. I’ll reveal the full prognosis after I set the stage, because even though the moments are etched forever in my brain, they aren’t stuck in yours yet.
So Heidi and I head off to Hershey that morning, bright and chipper. Okay, maybe the chipper part is an exaggeration, since I already viewed the CT scan report online, Friday night, after it was posted. I already knew one of the tumors had shrunken significantly, and that my bladder lining had thickened. I also knew that that fucking pufferfish was living, larger than ever, in the dark vastness of my uterine cavity. Inside of it was no longer a clear or murky liquid, but evil nodules of the deadliest kind (which they might not be, but in my mind, I’d already given the diagnosis). These were new and growing nodules. Evil bits that plague the pufferfish. However, despite the new larger size of the pufferfish, it was not causing me any real pain, that is to say, there was some achiness that I had attributed to just being lazy, but that I now knew to be pressure from the beast. It was not the relentless traumatic pain that I had before that warranted morphine just in order to function. In fact, I could get away most days without any medication at all.
Despite the two young deer that decided that crossing Interstate 81 was a good choice at 9:15 am, we arrived early at the appointment – and of course the waiting room was crowded, but not as crowded as it had been in the past. Of course, I was anxious, but I had kept deluding myself with the thoughts that Dr. K would just tell me it was nothing, put me on hormones, and send me on my way for three months. I was busy checking my facebook between talking to Heidi, or playing Red Herring and thinking “why didn’t I make that neato sign that says “I’m in remission”?” so I could take a selfie later. Then I was called. Well first they called for Diana, and ended up with the wrong person, then they realized their error and came back for me. And it was actually early for my appointment. Omen 1.
Well I went back alone, and was weighed and measured. When I looked at the scale, it looked like I gained three pounds, which was annoying, but turns out, I lost five. It’s hard to read upside down. I went in to the exam room with my nurse, and we did the blood pressure thing and reviewed my meds, and I gave a two for my pain level, and then this unfamiliar nurse left me and told me Dr. K would be in soon. And I waited. And waited. And waited. I heard and saw medical students wandering about, so I knew it was a minion day. This might take a bit.
And I waited. After 45 minutes, there was knock on the door. In came a young woman, who let me know she was a chief resident. She had a copy of my CT report, and asked me the usual minion questions. I told her I had already reviewed my report on line, and compared it to previous reports and she asked me what I thought. I told her I was pleased that one tumor had shrunk, but I was concerned about the other information. She smiled and said the tumor shrinking is good news, right? I agreed, and then she excused herself and told me they would be right back in a few minutes.
And I waited. By this time, I have concluded that this visit is going to have bad news. I never wait this long to see the Dr. It’s almost an hour. Dr. K has a southern drawl. I hear him going in and out of exam rooms, but never mine. My treatment coordinator, Anne, has not arrived to hug me. Something’s up. It’s not the usual laugh riot that my trip to the Dr. usually is. Even though I consciously want to explain away the delay, I know that the last time I had to wait this long, it was not good news at all. Nope. My gut knows this is bad. Omen 2.
Still waiting. The chief minion pokes her head in and says it will be just a few more minutes, smiles and exits. I hear Dr. K in the room next to me talking to the posse. I can’t hear what he is saying, but I am texting Heidi to tell her this is not good and I am still waiting. Then I hear him in the hall, telling someone to go find Anne and tell her he needs her. Then he says, tell her I’m in here, I am going in. And in comes Dr. K, at 11:45ish, with his somber face on. I notice this and say “hey, you have your somber face on,” and he sits down. It is never good when he sits down right away. Omen 3.
He whips out that CT report and begins. He says, well you already saw this, but I’m going over it. I say of course, I saw it, but my medical degree from google and web md are not helping me understand it. He says well the one tumor outside is significantly smaller. I nod. Then he says, but your cyst is back, and bigger, and again I nod. He says that this is not good. The chemo did nothing to the murky death cells in the cyst. They even grew. This is not good at all. We do not want murky death cell growth. He tells me that recurrent endometrial cancer is very bad, and I remind him I have used google and know this. He says that the only thing we can do now is try to stop the cyst from growing and/or keeping cancer from spreading. I nod, I’m on board for this. He sighs.
Anne arrived and she has a serious face on too. The chief minion in the chair aside me is silent. Dr. K says we can try another series of chemo, he can put me on a chemo pill, or we can do nothing. Ruling out “do nothing” as an option, I ask him what he thinks I should do, since he is the professional. and has a degree in medicine from a school and not web md, and he says that I have had a rough round of chemo and I should take the pill for three months, and enjoy my summer. Then he throws out “I am not going to bullshit you, if this things grows or spreads, this cancer is going to kill you.” Bottom line. He can’t give me a time frame or an idea of progression, but I know Dr. K long enough now that he wouldn’t be telling me this if it wasn’t a likely outcome. He then reminds me that I am not a candidate for surgery because of where and how this thing is situated and that even if I was, that again, he would have to remove my bladder, rectum, and as a new added bonus, my vagina. No, that is not anything we’d be considering anyway. Quality of life over quantity. I have done an amazing job keeping it together through all this, even making a few jokes. I ask for more oxycodone, while everyone scurries for my prescriptions and to write orders for CT scans in three months. Dr. K reminds me that I WILL be able to go see OWTH in September if they play in Philly. The grandchildren thing is still not something he can guarantee me, and frankly, it’s probably not likely.
Then he hugs me. I want to break down sobbing but I assure him I’ll be ok. Anne hugs me. I am in a state of shock, I think, and then I cry a little. I don’t want to go to check-out sobbing, because I will scare the other patients. I am choking it back. I am saying all the things that other people will say to me over the next few days in my head, there’s always miracles, get a second opinion, be positive – you know, all the shit that people say when they are trying to make you feel better. I let Heidi know I’m out and then I go to check out and stuff my bag with tissues, because the breakdown is coming.
I successfully hold it together until I get to Heidi’s car. Then I tell her my prognosis, and cry a little. Then we go to lunch. At Houlihan’s. I have two hard cherry lemonades. I am relaxed. I can deal with this, but I am devastated that I will have to tell Andy. I don’t want to ruin his future plans and make him feel like he has to put his life on hold while I wait for cancer to finish me off. I don’t want him to have to be without his mom. I don’t want to have to tell him.
For the record, I have told brother’s Michael and Alan that I am on Tamoxifen for three months, and that we will see what happens when we have CT scans in August. I didn’t tell them the endometrial cancer will likely kill me part. I am sure someone I have told or that reads this blog will spill the beans, but I couldn’t. I am also not telling my dad or my other brothers. I am sure again, that someone will tell them even though I DO NOT want them to know. I couldn’t not blog about it, because frankly I am tired of telling people and facing the sad face and hearing words that do nothing to make either of us feel better.
So for right now, I am in limbo. Knowing the history of this pufferfish and its habits, it’s more likely to keep growing than not. I am taking Tamoxifen twice a day, and hoping it helps. I am drinking turmeric tea and trying to eat better. I am chanting for healing. I am visualizing the pufferfish drying up and vanishing, but I also know better than to dismiss the likely reality. As I’ve pointed out to many of my friends, there are advantages. I’ll be able to get a prescription for medical marijuana when the law passes here in PA, and I will probably never have to pay back my student loans. One of the possible side effects of the Tamoxifen is that I may lose weight (I could also gain it, or die of an embolism, heart attack or stroke). So who knows?
Strangely enough, I am also okay with this. Knowing beats waiting for the other shoe to drop. And I can finally go get that new tattoo and get my ears pierced so I can get big gold hoops that say “sexy” and “baby” to rock with my bald ostrich head. And I only need to get through 2.5 months before my next CT scan before I know if the tamoxifen had any effect. Oh, and I get to return to work full-time on June 8th. Woo hoo. I probably could have had my Dr. write me off for the whole summer if I asked, but hell, I am tired of not getting a paycheck and having to rely on Andy for money. So we’ll see how this all works out.
That my friends, it the story. Now I’m off to make some lunch, or take a nap, or something. Enjoy your Sunday afternoon. Peace out.
PS. I have this goal of reading 1000 books before I die. I am on number 2. However, it’s heavy on feminist theory, so it could be a while. But you should be happy because it’s about feminism and you know how I love that. Just wait.
BTW, if you like this or any of my entries, hit the ol’ like button on this page. Maybe more people will read it then. And it gives me a happy star when someone likes my entry. It’s the little things, folks.
31 May 15 | Categories: c-monster, Philosophizings, Profound Insights, Random Rambling | Tags: amusement, bears, cancer, challenge, chemo, chemotherapy, ct scan, death, disease, doctors, dying, endometrial cancer, flying monkeys, life, malignancy, pufferfish, sick, side effects, tamoxifen, treatment, tumor, uterine cancer | Leave a comment
I stayed home again today – this means there isn’t going to be a paycheck next Friday. Good thing chemo is Wednesday, since I won’t need food or have much of a life for a week or two after that. Yes, you read that right ladies and gentlemen, chemo is next Wednesday is chemo, which may very well be my last chemo, we can only hope. I’m so done with all of this – waking up to eyes crusted closed because I have no eyelashes to protect them, the dry scratchy skin on my face and legs, the weird wispy white hairs that grow in the interim while I wait for my hair to grow back, being fucking exhausted 24-7, the weird smells in my nose and the fucking metal taste that hardly ever goes away.
But let’s review where we are at before I continue. My CA 125 number is still in the normal range, which is good, but it didn’t go down for two treatments and it went up this week, so I’m a little anxious. My blood tests are good, but my counts are understandably down, especially my hemoglobin and my white blood cells, which means I am ultra-susceptible to infection, in addition to being exhausted. I’ve been watching my temperature all day, because I started running a low-grade fever last night, I have an earache, and I can’t stop sneezing. What did the doctor say during our last visit you ask? Well, he thinks that the chemo will have done its job, and I will start hormone therapy after this last treatment as long as my scans look good. Ideally, the tumors will have disappeared, or at least shrunk significantly. It will still be contained to the area where it started and left the rest of my body alone. We did talk about the surgery option, and that’s never gonna happen. He said I’m not a good candidate, and he said it wouldn’t be a positive experience for me even if I was a candidate, so what does this mean? The tumors stay, no matter what their size. His goal for me and my treatment is give me a good quality of life. He did say I am not dying at this time – I will still make it to the OWTH show in Philly in September, and he will let me know if the prognosis changes and I am dying. He definitely said he would let me know if I was dying. So no dying. As for my plan to have grand-babies if that is what Andy and his life partner decide to do, Dr. K said there were too many variables for him to guarantee that could happen, but I definitely will make it to OWTH in September. That means I will also probably make Halloween and Thanksgiving, and Christmas this year. More than likely, I will be around longer than that too. It doesn’t sound like my demise is imminent at this time. These are all good things.
So tell me then, why am I so unhappy? When does this new lease on life shit come around? It didn’t happen last time, it’s not happening this time, and it’s very disheartening. I know a lot of this has to do with my exhaustion and my inability to do a lot right now, but I also know that if these tumors are not gone, or drastically diminished, I’m a time-bomb. According to my Dr., my cancer is atypical of endometrial cancer. It should not have come back, but it did. It should not be responding to chemo, and it is. It’s not doing anything that endometrial cancer should do. It’s quite possible that the cyst was always cancerous, but it never showed any signs of malignancy until this last surgery, which is bizarre. It’s my own special type of endometrial cancer. How fucking lucky am I?
I didn’t want to write anymore about cancer. It’s just not as funny this time. It’s old and annoying. I am much more than this disease, but right now it’s the only thing that I can think about. At this point, I have so little energy, I am excited that I can make something to eat in the microwave. I made baked hot dogs for dinner the other night and needed a nap afterward. I need a nap after I take a shower. I can get in the car and go places, but it is work to get out of the car and go in the house. If I can’t drive through it or get it all in one store, it doesn’t get bought. Sitting up for extended periods is tiring. I don’t want to sleep all day, and that seems to be all I can do. Thank goodness for the DVR, because I fall asleep during nearly every show I try to watch. I am surprised I didn’t fall asleep eating or driving yet. This disease is a monster. After my last chemo, I had these weird pains all over my body like a whack-a-mole of pain – there’s a spot on my foot that still hurts, and actually feels like I broke two toes, but when I actually touch them, there’s nothing wrong. I’ll fall asleep and then suddenly, bam, a fiery pain rocket fires in my leg, and I’m awake. Then the restless foot thing happens and I’m whining for an hour trying to get back to sleep. My medication helps, but sometimes I would like to just have a clear head for a few hours. I keep telling myself over and over…just one more. There’s just one more treatment – please let there only be one more treatment.
Opiates make for weird dreams throughout all of this. Most of them are weird in a good way – like I want to go to back to sleep to resume them. There are also weird dreams when I am not taking them, probably because my brain is bouncing back from being in the poppy cloud. Last night I had a really sad dream though and it’s been hanging around all day, as if now even my sleep is conspiring against me to keep me from waking up with a smile on my face. Meditation, chanting, sunlight – I am really trying to keep the black cloud away, but it’s not working out as I planned. Don’t get me wrong – I am still really okay with the whole death and dying thing – I still feel like life is trying to cheat me – but whatever is going to happen, is going to happen. I mean, I could step outside and step on a Shenandoah splinter, and get hep c. I could be hit by an unattended, unoccupied, runaway vehicle that rolls away from near the One Stop. I could choke on a grape. I’m OK with that – what I am not okay with this uncertainty, and the fear. I’m not fearless. I might act it most of the time, but in my bed – I am scared little girl, who is afraid of what might come – not the death part, but the being sick part. I don’t want to be any sicker than I have been. Again, my future is now going to be controlled by my access to health care.
There is plenty to be grateful for though. We now have a dryer again, thanks to Crystal, so I can at least watch and dry clothes now, even if I don’t have energy to take them upstairs. Andy cleaned the kitchen, sort of – now if I can get him to take the recycling to the recycling center. The rest of the house is a shambles. It’s spring. Things are turning greener. Kellie hung out with me at my last chemo and let me beat her at scrabble. I went out to visit Paige and Preston and Kenny. I had some pudding. It was good. It’s not all gloom and doom, but I need to vent what I feel here, because in the tower, there’s no one but me to talk to. It’s not easy being positive when you don’t know what’s next – I do what I can. Mostly I am happy and laughing, because what else is there to do, but alone, I am reminded that life has not handed me an easy go of this. It’s not fair and it sucks, and it’s so easy to be on the outside looking in and think that there is an end in sight – there is, but like the rest of life, it’s all fucking gray – not black or white, or anything I can hang my hopes on. Sure, the glass is half full, but in my world, someone will come along and poison it, just to keep me on my toes.
Sounds like the dryer stopped, so I should go throw the blankets in, so I can have fresh clean blankets to wrap around my walrus body once I take my medication and drift into a medicated slumber. I want to get past this disease that has overtaken my life, and focus on politics, feminism, and social injustice. ( I know you can’t even wait for that). Plus my eyes are getting weepy and tired, and want me to rub them non-stop until they are sore and red.
So that’s it for now my friends…I’m just gonna quietly post this, because this one was all for me, just to help me process my frustration. As with everything this will pass. Be well.
17 April 15 | Categories: Uncategorized | Tags: anxiety, blackness, cancer, carnivorous kangaroo, chemo, chemotherapy, ct scan, death, depression, disease, endometrial cancer, flying monkeys, sick | 2 Comments
Okay, it was three days, but that would make a super-long title, and I was trying to be succinct. (As if that ever happens.) I bet you thought I was going to write about Chemo Day, but that’s today, and hasn’t technically happened yet, except for the pre-gaming with Decadron and water and the daily cancer killing tea. I still need to shower and pack my stuff for the day, and am faced with the usual decision of do I take my cute pink back pack and carry the lap-top separately or do I take the black one with wheels? I am leaning towards wheels today because it fits more and well, has wheels, and I’m not feeling my best but I don’t seem to have a cold or ebola, and I don’t have a fever – which is awesome because I was scared I would be sick today and then have to postpone today’s fun fun fun. My chemo-buddy today is Kellie, who I know is thrilled beyond anything to be accompanying me to today’s festivities.
BUT! This entry is about the best three days I have had in a long, long, long, long time. If you have reading my blog, you know Off With Their Heads is one of my very most favorite bands. Listening to their record In Desolation (“Drive” video here) got me through my first six weeks of radiation and all that first round of chemo and their music accompanies to nearly all of my drives to and from Hershey over the last 3.5 years. When I remember my headphones, I listen to Ryan’s Anxious and Angry podcasts at work, or in the car. The music has become part of my support system. Well, Thursday, Andy and I drove to Pittsburgh on what was supposed to be a beautiful day to see OWTH play at Howler’s Coyote Cafe (note: saw no coyotes – I would make a cougar joke here, but I find the term cougar offensive, I prefer tigermom). Their show was amazing, the energy and passion of the band was amazing. They played songs from all of their records, and Ryan was awesome. The energy was awesome. The opening bands – World’s Scariest Police Chases, Barons, and PEARS – were all incredible. I met an internet friend, Erica, her husband Brian and some of her friends at the show – we became friend because we both like OWTH and punk music in general, and surprise, we are both work with kids in the system – I snatch ’em and she assists the ones that the court declares incompetent. After the show, I got to get hugs from Ryan and talk to him for a little while, which is always fan-girlie for me, because I can’t believe someone that I look up to takes time to talk to me. I got to introduce him to Andy too, which was cool. I had to have a drink with him, but alas, Howler’s is a bar that allows smoking, and by the time the shows were over, I was dizzy and shaky and a little nauseous and just wanted to go home. Ryan said they would probably be playing in Philly in September, so I hope to have that drink with him then. It was an amazing night. I also got to meet and talk to Zack from Barons while I was standing outside the bar waiting for Andy to bring the car around. Fucking stupendous night. (and if you read this Ryan – THANK YOU for being who you are – you made my night)
Day two was supposed to be the Warhol Museum, but Andy and I decided that even though it was snowing, we were doing the Pittsburgh Zoo and PPG Aquarium, because when I have to choose between becoming more cultured or seeing animals and making animal noises, I will ALWAYS choose the latter. Bring on the Komodo dragon, red pandas, and giraffes. And very sad elephants. And PUFFERFISH. Several different kinds of pufferfish, evil, evil pufferfish. Did I mention that the Zoo is on a hill? Or should I say a mountain? Because it’s a mountain. A huge mountain. And Andy would not push me in a “safari cruiser” IE. wheelchair. So I had to walk. Wearing heavy Doc’s sandals. Carrying water. It was brutal. We probably walked at negative 1 mph. Lots of heaving breathing and a frequently sweating head that was frosted by the subzero wind chill and flurries. It was fun though, spending time with Andy, telling him about the trips to the zoos and aquariums when we lived in California, making animals sounds, trying to find the animals that were clearly not home, and making flattened pennies like when he was 5. Afterwards we went back to the condo, got some great Italian beef sandwiches from a tiny place called Tooties (yum!), then just hung out and watched non-cable tv and napped. Later we got pizza from this greek pizza place called Ephesus, and again, awesome food. We just hung out and talked and slept the rest of the evening.
Saturday, we got up, cleaned up the condo, packed and headed out to an overlook to see Pittsburgh from the top of one many hills. Pittsburgh is an awesome city. We found an overlook, not the one we were looking at because in addition to sucking at taking night pictures all of the sudden, my phone’s GPS takes us to places that don’t exist. Or rather, when asked to take us to a location, it agrees but then leaves us in spots that are clearly not even remotely near where we asked to be. We did get to see a lot of Pittsburgh though, and Andy is even considering going out to Pittsburgh to finish school (YAY, FUCK YEAH!) Fortunately, the GPS cooperated with taking us to Abby Lee Miller’s Dance Studio, where I stalked cars pulling into the parking lot to see if there was a real Dance Mom getting out for class. None were available, but there were the cutest little people being brought to class. The studio was less impressive from the outside that it appears on the TV, but it was still cool to see it. Then we headed to Philadelphia. Did I mention it was FREEZING? Like super freezing. And snowy. We got to Philly by about 4, and hung out with Blaine and Lizz and had a delicious dinner from a real Mexican restaurant called El Jarocho that made scrumptious lamb tacos. Then we headed to see TBR/The Wilhelm Scream/ Pennywise, which was a fabulous show, but in my opinion, lacked the energy of the bands on Thursday, although it was very cool to realize that Pennywise has been a band for longer than Andy is alive, and I finally got to see them with their original vocalist. I hadn’t seen them since 2008. Long time. Unfortunately, I got a horrible horrible pain in my side and had to go stand in the back to try to work it out – we ended up leaving before the last song or two, but at least the pain subsided for the most part. We caught a cab back to Blaine’s to get the car, and headed home. But not before we stopped at Wawa, and got to see two drunk girls in ridiculously high heels almost wipe out several times in the store as they tried to outlast the state police DUI checkpoint. Good times.
We finally rolled home about 2 am. The house was freezing, but honestly, it was a small price to pay for such an awesome weekend. It felt so amazing to be among my people, enjoying simple things with my son, and talking about life and lessons and futures and hopes and dreams, and meeting awesome new people, singing at the top of my lungs to songs I love, and finding some peace in all of this. I basically slept through the next day – I was exhausted. I made it to work on Monday, and realized that if I died that day, I’d have no regrets – not like I don’t have plans for the future – but I was pretty damn happy, and would be okay if there wasn’t anything else ahead – I’d made peace with what could lie ahead. And made arrangements with Andy to be turned into fireworks whether things end in the next few years, or 50. I’m okay with it all. That’s not to say that I am not concerned, and wouldn’t prefer to live another 50 years, but whatever is ahead, I’m gonna be okay with it.
I’m actually finishing this early Thursday morning – post chemo. I’m going to stop here, and write about my Dr. visit and chemo later today, because I decided to wind down tonight with a cocoa-vodka/oxycodone mix, so I can sleep pretty soundly tonight. I also drank a lot of water today, so I am trying to avoid waking up ever hour to run to the bathroom. And I’m still feeling okay with my life, and what’s unfolding in it. The three day trip really refreshed me, reminded me that despite the horror of the last year and a half, from the time the pain started to today, dealing with this stupid fucking disease, I’m learning about me and what matters to me again, and finding the strength to make plans again, even if I still can’t act on them. Life is still hard, I’m still not always making the best choices, but this weekend reminded me of the person inside, and what brings me joy. I just need to bring more of it into my life.
So with that said, here’s some of my favorite pictures from the weekend – I didn’t take any pictures at Blaine and Lizz’s house – I don’t know why because their puppy Pancake is a sweet dog and fun to play with. It was great to see them again, and just hang out. But I am derailing again – here’s the pictures, including the evil pufferfish, enjoy them and come back later today to learn what the Dr. said my future looks like…sweet dreams my dahlings, I will have a peaceful early morning rest, hopefully, before the sickness starts.
2 April 15 | Categories: c-monster, Philosophizings, Picture Perfect, Profound Insights, Random Rambling | Tags: afterlife, alcohol, amusement, Andy, anxious and angry, cancer, challenge, disease, endometrial cancer, family, fireworks, happiness, happy, no regrets, Off With Their Heads, OWTH, Pittsburgh, resolution, road trip, show, son, uterine cancer, vacation, vodka-cocoa, weekend | Leave a comment
It’s never a good sign when I go to start writing and can’t find my glasses. I mean, I can do this without them, that’s what the little magnifying glass is for, to make this shit bigger so I can see it. But I’ve been having a lot of anxiety lately and now, being unable to remember where I put my glasses is going to be added to that mess of thoughts that are rattling around in my skull.
Anyway, I’ve not been writing – not because I haven’t wanted to, because I have, but there was a 10 day stretch where I couldn’t sit up for extended periods which makes the whole typing thing a bit difficult. Like I said, I have had some serious anxiety, something I have never really had before in my life, not at this level. I know it’s related to the c-monster and the uncertainty that is part of this go round with this nonsense. I also know that writing would also help to purge some of it, and I haven’t been able to. I also realized today that I am also really angry this time, angry that I have to deal with this again, angry that I have to put my life on fucking hold because I live in a country that doesn’t believe in national health care. You see, when you have cancer, it’s not like having diabetes or high blood pressure, stuff that is serious, but manageable and affordable for the most part. If I lose my health insurance, I am fucked. I mean, I know that I can still get treatment, but not the best, and certainly not without the added stress of worrying about how to pay for it. So, even though I have FMLA, because there is no finite end of this in sight, I am constantly in fear that I will lose my job, and with it my health insurance which has thus far assured me that I will have quality care. And in my reading over the last few weeks, I’ve learned that while I cannot be denied insurance for a pre-existing medical condition, I can be denied coverage for treatment related to that condition. For example, I can still get health insurance, but they don’t have to pay for ongoing cancer treatments, as long as they cover everything else. This information adds to the anxiety. I am not going to belabor this, I just need to say that it makes me angry that human life is only valuable when it furthers a fucking political agenda. Adequate health and quality health care shouldn’t be something anyone has to worry about. But I live in America, where what you get is what you can afford. I shouldn’t have to worry about things like this, I should be able to focus on getting well but the reality is that I can’t just worry about my health, I have to worry about being able to keep health insurance so I can get treatment I need.
It all comes down to the fact that this time, the c-beast is still inside me. They can’t just cut it out and give me chemo to track down and kill any escapees. All the visualization in the world will not erase from my mind the fact that my whole life is on hold while I wait to see if heavy metal poisoning will stop these arrogant killer cells from multiplying, and hopefully they die off and leave me alone. And unless it vanishes, that shit will remain inside me, waiting, taunting me. I don’t believe I will live in fear, but it’s always going to be there, in the back of my mind. Every pain, every discharge, every weird wiggle or twitch in my body will have me wondering what is going on inside. I am angry about that. I am angry that I have to endure this again, that I have to spend 10 days in bed because I can’t sit up without wanting to hurl, and there’s nothing to hurl, because I’ve eaten so little that it’s all bile. And all of this leaves me scared; I can put on the happy face, I can make jokes, I can smile and laugh and pretend it’s all ok, but I am fucking scared to death that it won’t be, and then I feel guilty because I then thing my thoughts will create my reality and …WHAT THE FUCK IS WRONG WITH ME??? Maybe I remember that the last time I went through this I was much stronger and positive, but then maybe that was just the way memory works, maybe I felt the very same way.
So yeah, I don’t know if it’s the same for everyone who has cancer, but I lie in bed at night and wonder what I did to deserve this. Was it something I ate? Having the laptop on my lap? Being a fat cow? Negative thoughts? Thinking badly about others? Revenge? Consequences of bad decision making? Drug use? It’s just not fair. I want my life back, I want to just be the happy and carefree grasshopper that I used to be. And then I go downstairs and I see Andy lying on the couch asleep on a Saturday night and I feel like it’s all my fault he’s there because his paycheck goes to making sure we have food and electricity instead of alcohol and clubs like it should be for a 23 year old. The last place I was on a Saturday night when I was 23 was asleep on the couch, unless it was because I didn’t get home until early afternoon. And even then I was probably going to spend some money on some substance that would keep me up for another 24 hours. I accept that my teeth are shit for those poor choices, but that should be enough punishment. The poor kid works overtime almost every day. He shouldn’t be here taking care of his mother, it is my job to take care of him. It’s wrong.
I swore I wasn’t going to whine about cancer incessantly when I started writing this but it’s hard not to when your whole day revolves around whether or not you are sick or going to blood tests or appointments or wondering how bills get paid and how to keep your health insurance. I sometimes wonder if I sleep so much because I am sick, or because I don’t want to have to think. (I know it’s because I am sick, but I can’t help wondering). I’m scared and I’m angry and I am worried. I wish I could break down and cry but my stomach ties up in knots and my chest gets tight and I toss and turn and wish I could just forget for a while what day it is in my treatment cycle and forget when I have to go back. I’m 2/3 done with this series of treatments, and my numbers look good, but at my last doctor’s appointment, Dr. K pointed out that while my numbers look good, they aren’t where he wants them to be at this point, so he subtly hinted that six cycles may not be the end of my treatment. And so, the end I was keeping in sight, is no longer so clearly defined. And sure, I know many of you are thinking but he didn’t say you have to have more treatment, and be positive, and stay focused and blah blah blah. Easy to say when the tumor is not inside of you, and trust me, I remind myself of all of those things a million times a day, while I count the hours until the next CA125 test to see where that fucking number is, knowing that even if it’s improved, it’s not a guarantee. Everything is so much more complicated this time, and as a result, my mind is constantly picking apart every twinge and tickle.
And since I can’t literally kick the shit out of the monster inside me, I let other things frustrate me, and then I hate myself for that, because I am not that person. I want to be Polly-fucking-sunshine and I can’t be, even though I constantly try. And lets not even talk about disaster house, my prison during my sick days. I spent two hours today trying to do some organizing and hardly made a dent. I ask Andy to do stuff, but let’s be realistic, the kid works 12 hr days for 5 days a week, and I am not gonna wake him up to ask him to clean the bathroom or do dishes. My friends offer to come help, but I am too ashamed to let anyone in to see the disaster this house has become, and I can’t do anything myself. I feel pleased making my bed and hanging my clothes on hangers. I vacuumed 9 steps the other day, and was too tired to finish, which then made me angry that I can’t fucking do anything. I would wish the house would burn down, and let me start fresh, but that would affect my neighbors and that just wouldn’t be fair.
So yeah, I’m pretty frustrated. It will pass eventually, I’ll get to a better place but in the meantime, I’m in this dark place trying to stay all sunny and hopeful. What I really planned to do when I started to write was to write about the amazing kids my son went to school with at Milton Hershey School (go ahead, click and visit them, this will be here when you get back) and how they started to raise money for me to get my own car so I don’t have to rely on Andy all the time because right now we have one car, and Andy has to drive me places and pick me up, after he works all night. I can drive myself, but when he’s not here and has the car, I’m stuck because I can’t really walk anywhere for anything. It’s on gofundme – it’s amazing to see what some of these young adults donated – crazy – for me, and their messages – it touched me beyond belief. I only found out by accident, and Andy had no idea either. More than the money is that these amazing kids wanted to do this for me, and help Andy and I. But maybe even more touching was the lady at the pharmacy the other day when we were coming back from Hershey. I went in to pick up my “auto refill” pills, which were only partially refilled, so I had to wait. This older woman came in, she was 75, and her refill was also “auto refilled” which meant she had to wait too. We started talking, as my bald head kinda clued her in to my cancer, and she told me how she had a quadruple bypass and then had clots in her lungs and died three times on the operating table. (For the record, she also told me there was no light, and none of that nonsense all those people who died claimed to see) She was a very religious lady, and kept telling me she was testifying. When they called her for her prescription, we ended up hugging each other. As she was leaving, she shoved five dollars into my hand and insisted I take it, and we wished each other well. I was moved by how much a stranger cared about me, and how you can make a connection in the most unlikely of places, on a day when I felt like walking death, and all I wanted was to get home and get back into bed. Of course, I realized that had they not screwed up both of our prescriptions, our paths would never have crossed. Still, it doesn’t mean I am not changing pharmacies, because I am tired of their mess ups. Anyway, it was serendipitous moment that made my day.
Well I think I pretty much got a lot of my ire out in this post. Wasn’t the funniest or most reflective one I ever wrote, and totally not what I was planning in my head, but it’s good enough for me. I’m gonna try and get some sleep, since I want to try to get a few things done tomorrow. At least get a load of laundry or two washed, so that’s it for now lovelies. Be well and enjoy the start of spring. I’m gonna go spend a few hours chanting and hope it lulls me to sleep. Sleep tight.
22 March 15 | Categories: c-monster, Philosophizings, Profound Insights, Random Rambling | Tags: amusement, anxiety, bald, bears, blackness, cancer, carnivorous kangaroo, chemo, death, depression, diagnosis, disease, doctors, endometrial cancer, flying monkeys, narcotics, pain, peace, radiation, rambling, restless, sadness, sick, sleep, spring | Leave a comment
If you woke up to birds singing and cuddles and happiness, click that X in the top right corner and get the fuck out of here now. I’ll give you a few seconds to escape.
Still here? Well I am not responsible for how you feel all day if you read this. I’m giving you fair warning.
Okay, fine, the choice is yours, but you will be sorry. I am, and I am writing the shit.
I started having panic attacks yesterday. Serious sobbing, full on snot slinging, not enough tissues in this fucking box, I can’t catch my breath panic attacks. I am still having them, on a less severe scale than last night, but isn’t that how horror works? The most terrifying things live in the dark and no amount of light, sunlight, electric, candle, is gonna take the terror out of it.
I am still sick. I want to get the fuck out of this house today, and just go somewhere. Anywhere. No, not anywhere. An ocean – okay, Pacific ocean where my tears can get sucked into the gigantic vastness that oceans are. It seems like it’s been months since I got this news. It’s only five weeks, but it seems like forever. And all at once it seem like it all happened so fast. And here I sit again, with a fucking cancer garden dying deep inside of me. (That’s right you nasty poisonous bastard, you’re dying inside me, because you have no right to be there) It’s so very different this time – last time I was all like, okay stupid cancer, you will be gone in six months. The second time, you’re not so cocky. I mean, I was supposed to have made it past the recurrence window. This little monster sprouted and started taking over in a two month window. I know what my stage is, I know what my odds are, I know that it is definitely possible to win again, but it’s a 1000x more scary the second time. And a second time where they can’t just do in and cut it out like last time. I have to live with it inside, knowing that the only way it’s going anywhere is if the combination of chemo, positive energy and visualization of it vanishing make it go away. Stupid cancer. It takes so much more than your health.
Yeah, I am strong, and brave and have the guts to take this on again. But I am also a tearful mess who is so scared I am not gonna be around to see the way life is supposed to play out. What if I am not to see Andy get married? To see my grandbabies? To see my niece graduate or my nephews get married? I am not afraid of dying. I am afraid of what I’ll miss. What I thought was in my future and what might be so unfairly snatched away from me now. Oh sure, I know you’re thinking, well miss fucking sunshine, that’s not a very positive attitude! You’re right, it’s not, but it’s a very real one. It’s whats’ gnawing at the back of my mind 24 hours a day. Most people are afraid of dying – I’m not. I’m afraid of leaving. I know I will always be connected to the people in my life now, we’re all energy, we all are connected, but I am not done with this life yet. I have plans. I need to retire in Bali, I need to join the Peace Corps, I need to make a half-assed attempt at surfing, I have several more tattoos planned, I need to drive cross country and couch surf a few months on the west coast. I still want to get a PhD, and teach. I am not pleased that my plans are compromised by something completely out of my control. And in my mind, I rehash every doctor visit, every test result, every procedure and I wonder why the fuck I can’t win the lotto, but cancer II? I win that. How could it just show up like that? What did I do wrong? And believe me, I look back over my life, at every less that stellar choice or thought I had over the last several decades, and wonder what I am being punished for? It seems like every questionable thing I have ever done is being returned to me in the form of a nasty little parasite that is eating me up from the inside.
I didn’t even think it was possible for a human body to hold so much snot. Where does it come from? I am so scared this time. I have never been this scared. I feel like a caged animal. The chemo sick is so much harder this time – five days later and I am still tasting metal and not sure whether or not food is going to stay down. I am out of effexor – this is probably part of my non-stop panic attacks, I know I have a prescription bottle in this house somewhere that’s half full, but I can’t bend over to look for it, because I feel like hurling. Every joint in my body hurts, and motrin, tylenol and percocet are like a roulette wheel to see if one will actually help. I can’t get the weird chemo smell out of my nose, no matter how many bazillion times I blow it. I think my blood is part ginger now. It’s the only thing that keeps me from spending my day huddled over the bathroom sink. I lie down one minute and feel fine, and then in five minutes, my stomach is cramped up so much, that I want to unhinge my jaw and tear my stomach out. And, for comic relief, how about a post-chemo fart? Toxic clouds are less vile. Dick Cheney is less vile. As if you aren’t sick enough already, your body attempts to suffocate you in a noxious cloud at random points throughout the day.
At least the crying has slowed down. Blood tests tomorrow. Woo hoo. And I have two more weeks before I have to go through this nastiness again. I really feel for that 17 year old girl who wants to refuse her chemo – how is it more compassionate to put her through this when it’s not what she wants. I’ve already had the conversation about quality of life vs. quantity with Andy and my brothers – if it ever gets to that point, I’m cashing in my retirement, buying a surfboard, renting a car and driving to California, buying as many edibles as I can eat without freaking out in paranoia, paddling out and waiting for a great white to eat me after it mistakes me for an elephant seal. I am not dying in a hospital, all weak and sickly, it’s gonna be on my terms. Morbid, yes, but when have I truly not been? Really, I continue to watch Meet The Press, and I know how that’s gonna end every week, and yet I go back.
So next time you want to tell me how brave I am, or how strong, just remember that I am also a very scared and tearful little girl, wishing someone would save me from this monster. Facing this a second time is not about a fight, it’s about getting up everyday and doing what I have to keep from being paralyzed with fear. When I smile, it’s because I can’t rub my nose anymore or the skin is going to come off. When I make jokes, it’s because I’m scared and I need to find a way to cope. I’m gonna keep coping – I have to – it’s not time to give up. I’m not a survivor – that’s a fucking stupid word. I’m a person who has a fucking obstacle ahead – I may not overcome it, but I’m still gonna try. I’m also smart enough to know if at some point I have X years or months left, I’m not gonna waste that precious time trying to give me 10 extra sickly days, when I can have 5 days of fun. Look out Disneyland if that happens. Or Ireland. Or Bali. Or all three, and Peru.
You were warned to not read this. If you’re crying or horrified, that’s on you, not me. This is my blog. I have to face this shit down daily, and this is my process. This is how I sort through the rapid firing shit in my head that just won’t stop. You only have to read this once, and never again. I’ll be the one having a breakdown during Fairly Oddparents or Iron Man 3. I can’t promise that I won’t be maudlin or dramatic in the future either, but I can promise that I’ll do what I need to do to get through today, and tomorrow. Like my friend Debbie reminded me, these are the real feelings, these are what people with monsters inside them really do feel, and it’s ok. OMG, where is this fucking snot coming from???? It has to stop sometime!!
So that’s that. I’m gonna try to slog down another ginger tea. And check to see if my prescriptions are ready. And maybe take a drive. It’s a beautiful gloomy day out there, and if I can unswell my eyes, maybe I’ll go hang out among the dead for a few hours with my camera. Or do laundry. The mundane shit goes on, even when you’re having a meltdown.
Enjoy your Sunday, mes jolis canards aperçus! (use your google translate if you must know)
PS. To all of you wonderful friends, who call/text/message me to see if I need anything, thank you. Mostly I don’t need anything – I don’t really eat much lately but these are things that I always can use: Fresh turmeric root, Ginger-Honey Crystals, Reed’s Ginger Brew – Regular, Premium, or especially, Extra Ginger, Ginger Ice Cream, Anti-Viral Tissues, and bottled water – but not Arcadia or whatever the store brand at Boyer’s is – I don’t care what people say, water has different tastes depending on where it comes from. And sesame crackers. My food tastes are really different this time, and what I am hungry for can change hour to hour. If you are worried about Andy starving, don’t be, but if you insist on feeding him, there’s nothing the boy won’t eat except mushrooms. Well, he’ll even eat certain types of those, but he also gets random drug tests at work, so no thank you.
11 January 15 | Categories: c-monster, Philosophizings, Profound Insights, Random Rambling | Tags: anxiety, blackness, blood, cancer, chemo, chemotherapy, cyst, death, depression, diagnosis, disease, doctors, dying, endometrial cancer, family, fear, flying monkeys, food, ginger, hope, insight, malignancy, ocean, pain, panic, plans, procedure, sick, surgery, survival, toast, treatment, turmeric, uterine cancer | 3 Comments
Yeah, it was that kind of day. The kind of day you won’t forget and you hope will never come again. It’s still all very surreal, even though I have a folder with hard copies of all that went on and I can sign into the computer and see with my own eyes what I don’t really want to know. Stupid internet. S tupid body. Stupid cancer. You all suck.
I actually was early for my appointment today, even though I didn’t get out of the house as planned this morning. I skipped a coffee because I didn’t want to jack up my blood pressure which I anticipated as already being high due to anxiety. Surprisingly, blood pressure was perfectly normal. Better than ever, and I didn’t even take any pain meds this morning And I only gained a pound and a half in two weeks, which must have mostly come about last night when I was stuffing chocolate into my mouth with pretzels in order to create chocolate covered pretzels and then stuffing more feelings with a bag of sweet potato tortilla chips Yes, I wasn’t really hungry, yes, it made me sick, but the food just kept being shoved into my chomping jaws. Just like after my doctor’s appointment today when I tried to quell my emotional upheaval with taco bell and a banana milkshake at Sonic. As if it matters what I ate today, because tomorrow is chemo and I won’t want food for at least 4 or 5 days.
Okay, okay, I’ll cut to the chase. They didn’t have my MRI results posted last night or today. Dr. K came in to see me by himself, even though I heard the chattering minions whispering outside my exam room door. Not the best indicator. He looked at my MRI images on line and said he really didn’t see too much different from the last CT scan, and again went over the treatment options I had. I asked a few more questions this time, being that I was less in shock than last time – until he started talking about options. My beastly cancer-garden cyst is in a place that should he operate to remove it would cost me both my bladder and my rectum, because the pufferfish and friends are in close proximity to both and somewhat connected and that means they have to take anything that is possibly harboring mutated cells in the neighborhood. Fucking cancer. I don’t really need to elaborate on what the end result of that would look like, because I am not even entertaining that option. Even if he did surgery, there’s no guarantee that it would be a success, for a plethora of reasons including the fact that it would just delay chemo until my body healed, which would cost me time, and it would involve a very long healing time, and would be risky and very hard for me to recover from. Not to mention that it would change the quality of my life forever. He again explained why there’s not going to be any radiation, and discussed chemo versus anti-estrogen therapy. He remains positive that the ol’ c-monster will respond well to chemo, but really what else can you do but hope for the best? So after much sighing, he gave me a big hug, told me Anne would be in with my schedule and paperwork, and said he’d see me in three weeks. No minions today – they appeared to be a fresh batch because it was a new semester and I am sure he didn’t want to traumatize them too much on their first day in gynecological oncology.
Anne came in and more hugs ensued. And crying. And laughing. And she gave me my schedule and reminded me to pick up the good ol’ decadron and compazine so I would be prepared for poisoning tomorrow. She kindly color coded my schedule for me so I know when I have chemo, and dr. appointments and blood tests. Blood tests are going to be weekly this time because the radiation from last time has compromised my bone marrow and they want to make sure my blood counts stay where they should be. I also signed a release for blood transfusions. I got kinda excited about that, because fresh blood is a pretty good thing, I like when I get blood, it makes me all energized. We talked about herbal medicine for side effects and to compliment my treatment and I’m going to explore that with her okay. No zofran this time, just compazine to start for the nausea. She’s a great coach, and told me I did this once and I could do it again – the difference being this time the monster is still inside, and last time they cut the shit right out. And last time they took organs I was not longer using anyway. This time, I’d be missing parts I’m kinda fond of. Which again, not considering as an option. I’ll be seeing her pretty regularly at the ol’ Cancer Institute, as I go through this cycle. I also made sure I got my note saying that chemo would be poisoning me and I would be missing work. And a lovely catalog of hats with fake hair attached as if I am going to be seen sporting fake hair – if I want fake hair, I’ll draw it on with my sharpies. And off I went, to get my first of a bazillion blood draws. I did get a penguin sticker for my bravery during the blood draw. I am going to keep my stickers on my folder. My new rule is no sticker, no blood.
And in a repeat of two weeks ago, me and the phone returned to the car, and did our texting. And crying. Much shorter this time. I just wanted to get home, so I ran in to Karn’s and located both the delicious Halos and some Ginger Brew, so I can get through the next week. Then I comforted myself with the aforementioned taco bell and banana milkshake. It didn’t really work, but I did see my beloved pony-pony and that made me smile. He was hiding in the barn trying to stay out of the freezing wind. Another day out of the glue factory.
I was going to drive around for a while but I decided to just go home and curl up in bed and pretend none of this was happening. Of course, I had to check my online medical record when I got home, so I could add to the joy of this day by reading the MRI report. Apparently, pufferfish is now sporting two tumors, instead of one. Two. Two bloodsucking leech tumors. Two. The second one is 8cm long. The first is 10cm. So they aren’t exactly petite. Doesn’t change the treatment, but causes additional emotional damage. More crying, more curling up in a ball, more cursing my luck and trying to figure out what I did in a past life to be poor, fat, and get cancer in this one. Of course, as you can read, I’ve rebounded somewhat because I am writing about it. Cancer fact – every tumor after your first one is not only considered to be the same type of cancer as your first one, but also considered to be the same stage as the first, so they are all IIIB. Lucky lucky me. If only cancer was the powerball – I wouldn’t have won the jackpot, but I would have five numbers. Cancerpalooza.
So yeah, I am feeling sorry for myself. I’ll get up tomorrow and pull it together and get to chemo with my new skull blanket and some projects to keep me busy for the six hours of poisoning ahead. Cross your fingers that the weather folks are right this time and there’s no more than 3 inches of snow tomorrow. And that I don’t get the evil wicked winter plague that Andy has. And that there’s no more brutal wind. Oh there’s the bell saying take the decadron – be right back. Decadron pills are green. So now I take a pink, purple, green, white, yellow, red and white, and brown pill every day. If I start to take morphine again, I will add a blue one again. A rainbow of pills and no unicorn. So that was my day peeps, what did you do?
It’s time for me to load up the iPod with some podcasts and go down and make sure I turned the oven off because I actually made dinner since by the time I get through chemo sick, the roast would have been ready to throw away. I have to get up early again and pack my stuff. I know this wasn’t one of my funniest or most amusing entries, but hey, we have to take the bad with the good. I am sure chemo will be eventful. Apparently they have me scheduled for an infusion chair instead of a bed, and I am hoping that will change by tomorrow, because I am there for six hours, I should get a bed. I may or may not feel like writing tomorrow after all the fun, but I am sure I will be back in a few days, snarky and sarcastic as ever. As always, keep sending the good juju my way. And I’ll keep you entertained with these thrilling bloggy bits.
6 January 15 | Categories: c-monster, Philosophizings, Picture Perfect, Profound Insights, Random Rambling | Tags: amusement, anxiety, biopsy, cancer, carboplatin, chemo, chemotherapy, ct scan, cyst, death, depression, diagnosis, disease, doctors, flying monkeys, food, hope, hospital, mass, procedure, pufferfish, taxol, treatment, tumor | Leave a comment
That’s right, my lovelies – I did not run over any armadillos, I did not get a cat, I did not mix vodka with orange juice, I did not become a brain eating zombie, I managed to stay awake for at least one hour a day, I resolved to clean the house when absolutely necessary (which it never truly was), I did not use a drone to attack the neighbors, I ate no cauliflower, I checked my phone once a day, and I never told facebook what city I live in, no matter how many times it asked. 10 Resolutions made, 10 completed. Completing such daunting tasks gives me such a sense of satisfaction. I don’t know that I can top this in 2015, but damn it, what’s live without challenge?
I’ll get to this year’s resolutions in a moment. I really want to give the real ending to the attack on the cyst, because I couldn’t before I told my dad (aka pop) the facts – I didn’t want to ruin the holiday for him or for my niece – I mean I had to ruin it for Andy and some of my brothers, co-workers and friends, and of course, it was a bit of a downer for me too, but I couldn’t do it to my dad. I think I’ve told most people, if I haven’t and this is where you get the news first, I’m sorry. It’s not the thing you get any enjoyment out of telling people and one thing I’ve learned is that no matter how many people I tell, there’s always going to be someone that I forgot to. I can think of five or ten or fifteen now. Fact is, I’m tired of telling people. Here’s a fact: Telling people you have cancer (again) is fucking hard. You feel bad that your are giving people bad news, you feel you have to make them feel better, they always ask how they can help and it’s just generally a bad thing. If I tell you, just tell me that you love me. Or if you don’t love me, just say, hey, whatever you need. I’ll keep talking if I feel like talking about it, and if I don’t keep talking about it, and you have questions, ask me. I have a blog, seriously, it’s not like this shit is secret.
Anyhow, I read the CT scan before the surgery. I saw the words “possible malignancy” – I saw the look on the ER doctors face when he had to tell me there were some concerning items on the scan. I know my body. I knew something was wrong. After surgery, when Minion 1 arrived, and I asked her about the offending nodule and if they found cancer, she danced around it, saying that they “don’t think” anything is wrong, but they are only using human eyes. I much preferred the way I found out the first time – the resident held my hand and said it straight up, we can’t confirm it yet, but from the preliminary pathology, it looks like cancer. This time, I knew I was going to hear not very good news at my appointment. I know when they take a biopsy, they look at the sample to make sure it’s a good one. They don’t just randomly snap out a bit of tissue and hope for the best. And while they are checking, they can notice whether they have good cells or abnormal cells. Sure, they may not know if it’s malignant with certainty, but they know if something’s up or not. Minion 1 needs to work on her delivery. I should give lessons.
I also knew I wasn’t healing as quickly as I have in the past. I had some pretty hideous bruising. I lost my appetite. I knew things were different, but I wanted to believe what the Minion 1 told me. So when I got to my appointment on the 22nd, I was ready for the news, or at least I thought so. I went by myself because Andy was in Pittsburgh with my nephew and brothers for a Steelers game. I didn’t want him to not have fun because I had an appointment. I asked my niece’s mom to go with me last minute, but she couldn’t. So I just resigned myself to going it alone. I got there on time, checked in, and waited. I got weighed, and found out I’d lost 40lbs since October. That’s a lot. And then I waited. My blood pressure was almost normal, but there was much excitement by the nurse when I told her I was off the morphine and just taking percocet. I wasn’t in pain. That’s good. Yay. No need to undress. Hang out, Dr. will be in. Now, Dr. K is a presence. He’s a tall, funny guy, with a southern twang to his voice and he’s always cracking jokes with nurses and staff and patients. I suppose you have to when you have to give the news he’s giving. He’s almost never late. I can sometimes hear him talking to other patients when I wait for him. Today I can hear him telling one that they will beat this thing, and that they will be in to review the chemo and radiation schedule with her, etc, etc, etc. Not good. It’s still taking a while for him to see me. I wonder where my treatment coordinator is – I have presents for her and Nurse Sue and Dr. K – just little holiday gifts to say thanks. I don’t hear Anne outside either – not good. Finally, Dr. K arrives with Minion 2 from the ER nightmare. They sit down. Sit. That doesn’t usually happen, so yes, it’s another harbinger of doom. Dr. K looks at me and doesn’t mess around – the biopsy shows cancer, and launches into how we could treat it. No surgery, no radiation, two different ways to address it with chemo, there’s no protocol for cancer in this area, quite frankly he doesn’t even know how or why it came back, it shouldn’t have at this point, once you pass two years, there’s a much less likelihood of recurrence. I just kinda look at him, and tell him I don’t have dying on my agenda. He said that’s good because he hasn’t, and isn’t, giving me permission to die. I’m not crying, I’m almost relieved because now I know – I awkwardly hand him the card and ornament I brought him – tell him I don’t know if he Jewish, or celebrates Kwanza or Christmas, but he can hang the ornament on his Hanukkah bush if he wants to – and thank him for taking such good care of me. I can tell this is as hard on him as it is for me. I think the Minion 2 wants to bolt, but is glad I am not crying and that I am, matter-of-factly, addressing what I need to do. Dr. K tells him to talk to me about the MRI, since he hasn’t staged it yet, and needs the MRI to determine what all is happening in the dark recesses of where the stupid pufferfish lies. I tell him I think the unwieldy beast is starting its dark resurgence because I’m having some discomfort in the area, and he says that’s what he wants to see on the MRI. Minion 2 has ceased sweating, I truly believe he thought I would lose it like I did when they offered my the psych hold in the ER. I maintained calm. OK, I was in shock, but it still didn’t involve crying.
You are never really prepared for the news. I’m still not sure I have accepted it, and probably won’t until they hang the poison bag on the rack and it starts dripping into my arm. Dr. K and I hug, he assures me that we will kick cancer’s ass and be laughing about this in no time. He tells me this is a shitty way to end the year, and a shitty way to start a new one, but go home, enjoy the holiday, and they will call me with the chemo schedule the day after Christmas. I tell him I trust him, he got me through it the last time and will this time. I shake the Minion 2’s hand, and like a scared bunny, he hands me the packet of papers for checkout and flees the room. I head to checkout. As I stand there, alone, having just been told my body has betrayed me, it hits me, and I tear up. I have cancer. Fuck. The receptionist asks me about the papers – I tell her all I know is I have a 4 week appointment on the 5th, and Dr. K wants me to have an MRI. She asks if it is scheduled – I tell her I don’t know – I was just handed papers by the Minion 2. She looks, and doesn’t have a clue why I have been handed all of Dr. K’s results and notes. I suddenly realize I need a note for work, and another prescription for percocet. I ask if she can get that for me when she asks him about the other papers. She does – he tells me I’m off until after my 4 week check up. I realize we never even looked at the incisions. Good thing I heal OK. She comes back with all my papers – I ask her if she can give Anne and Sue my cards and ornaments. She will. I’m still not really connecting to any of this. I get my appointment for the MRI and visit summary and head for the elevators.
I don’t break down until I am in the car. Then I am a snotty, sobbing, weeping, sniveling, snorting, coughing, choking mess for about five minutes. And alone. Horribly alone. And also very glad to be alone because I don’t have to worry about making anyone else feel better about my breakdown. I text who I need to text. I need to get groceries while I am down here. It’s funny how the trauma and the mundane activities intersect here. I need to get food. I also need to get home. I start the car and go to Giant, and mindlessly wheel the cart up and down the aisles, tossing shit in I don’t really need, but I have a fuck-it-you-only-live-once attitude and decide we’re having a fucking rib roast and ask at the butcher counter for a small incredibly expensive rib roast. Two hundred dollars later, I’m checking out of Giant with my rib roast. I forget to buy water. I’m not even hungry. I need to go home and that’s the last place I want to be. My iPod won’t fucking charge. I’m not going home until I have the opportunity to sing loudly with my iPod, and preferably with OWTH, until the pain inside is purged. I must also see my friend, Pony-Pony. I need some normality in this surreal scene. I also need gas. Actually, GAS first.
So I drive – first to a gas station. I fuel up and head to the MHS barn to see Pony-Pony. He’s not there. They probably are making him be the stupid donkey is some live nativity somewhere. I keep driving. I see my friends, the goats, at the goat barn, and I yell “fuck you” at the sheep in their pasture. My iPod is still not charged. I see some cows. I see another pony, and another, none of which are Pony-Pony, but at least I saw them. I keep driving. I realize my blood sugar is quite low, and I am a little shaky – I’ll got to Hardee’s. This whole time I feel like I am in weird freaky film where my character is in a dream world unbeknownst to everyone who sees her. It’s like none of this is real. I finally get the iPod charged enough to commence screamsinging. Fortunately, RTE 322 is not busy and I can cry and sing and drive all at once with no worries. It’s not real. It’s not real. I get to Hardee’s and order some sort of burger and onion rings. I manage to choke down the onion rings. I head home.
The drive was cathartic. And pretty scary. Occasionally I would look down at the speedometer during pauses between songs. I pushed 100+mph more than a few times. It’s not really my fault the car goes that fast. I slowed down several times. I wanted to get home and then I didn’t. I would have to tell Andy and then other people. This is the part that sucks. I finally drove home – I walked in and Andy was all excited to tell me about his trip and the game – and I killed that with a look. He asked how the visit went and I lost it. I sobbed and cried and told him how sorry I was he had to go through this all again. My kid is a good hugger. He told me I was the strongest person he knew and it was just cancer, and I could beat it. Then he proceeded to hug me some more. When he was adequately covered in snot, he went and got the groceries from the car. I didn’t want my expensive rib roast being stolen in this neighborhood
The C-monster is such a fucking burden. Not only do you have to worry about being sick, but you have to worry about bills and work, and the house and telling people and not upsetting people all while being told that this is the time you are supposed to focus on yourself. If there are people who are able to do that, I wish they would have a network where you could find out their secret. Because once you recover from the shock, you have to think about who to tell, and when and where and how and how are they gonna react and if they are old, like my dad, are you going to kill them? And then there’s the logistics – appointments and chemo and food and laundry and the joys of all the changes in smell and touch and taste. And when you have been the head of household for the last 24 years, that just doesn’t stop, you still worry about that. It’s just a lot. And no matter how much you have people tell you they will do whatever they can to help you, you don’t want to ask, because you don’t want to be a burden, and you want to be strong and tackle this yourself.
I’m tired of writing tonight, and I am tired of watching this fucking pathetic Steelers game while I type. I’m tired of being sick and doctor’s appointments, and not wanting to get out of bed. At least there’s minimal pain. At least there’s plenty of food in our house and we have functioning utilities. I can still write. My bed is comfy. I have a new blanket to take to chemo with me. It’s all gonna be over in 18 weeks (it better be). Tomorrow is the MRI – it will be a whole new experience for me, so look forward to that blog entry. I sure hope there’s no metal inside that suddenly gets torn from my body like I’ve seen in horror movies.
Good night my happy people…I’ll be keeping you updated – hug on your loved ones and do something fun with them before they can’t, or you can’t. Sleep well. Oh, about those resolutions, still working on them. I won’t be bound by your constrictive linear timetables. Kisses.
Oh yeah – three years ago yesterday, I got my first diagnosis. Happy Anniversary. I didn’t know the 3rd anniversary was also cancer.
4 January 15 | Categories: c-monster, Philosophizings, Profound Insights, Random Rambling | Tags: anniversary, annoyances, anxiety, bald, biopsy, cancer, chemo, chemotherapy, children and youth, cold. flying monkeys, ct scan, cyst, diagnosis, disease, doctors, family, fear, flying monkeys, gratitude, happiness, health, hope, hospital, humor, ipod, life, malignancy, mass, mri, narcotics, New Year, pain, positive attitude, procedure, pufferfish, selfesteem, side effects, surgery, survival, treatment, uterine cancer, whining | Leave a comment