Tonight was The Menzingers at Union Transfer in Philly (awesome set, nice venue) with Mewithoutyou (great performance) and two other bands…one I missed because they closed a road in Fairmont Park and put up no signs causing mass chaos and delaying us. Got to hang out with Lizz and Blaine and had a mostly painless night. It was a rough day emotionally, so I’ll take the absence of any kind of pain.
Picture it – 2am, there I was, driving home in the rain, Andy passed out in the passenger’s seat. I was listening to the Jealous Sound, enjoying the dark, wet night, singing (or wailing as some might say) when I notice something that looks like a leaf crossing the road. It bounced 3 times before it I realized it was no leaf, it was a frog. A very brave frog who decided to cross the road. She was just a wee thing. But it reminded me that life is tough and all, but it’s got cute little surprises now and again. A brief bit of joy in the night. AND then I saw a second one. Double happiness. Two tough little buggers.
But because I am me, I immediately thought perhaps this is the apocalypse, and it’s raining frogs? Or does it rain blood? I forget.
In other news, I bought a panda suit today. Because life is too short to not have a panda suit. Really I just wanted the head, but apparently all the available panda heads are just ugly. I can’t wait to sit on the porch and wave to cars.
And I’m thankful.
And now, I’m going to crawl into bed, and watch last season of Vikings again. Goodnight pumpkins, Dr. is Monday, so I’ll be back soon.
Joyeux après-midi, mon petit kangourou amis I’ve been putting this off, not because I didn’t want to write it, but more because I am mostly a miserable bitch these days, and I don’t like that part of me. There is no position in which I am comfortable – the best I can get to is tolerable, and that takes a special medication combination that usually ends up with me falling asleep while typing. Or forgetting what I was typing. Or both.
WARNING GRAPHIC DESCRIPTION OF THE PERILS OF THE PEE BAG AHEAD. If you want to skip over the gruesome details stop here and pick up at the word SAFE.
I just need to bitch right now before I get into the trip to John Hopkins. My thighs are covered in black and blue marks from the tape constantly pulling as it holds the vagina tail to my thigh. It makes me feel like I have to pee constantly. Today there was all sorts of blood and clotty strings in the bag – gross as it is, it’s kinda like a sick set of sea monkeys. This is somewhat alarming when you go to bed with normal pee and wake up to bag of fruit punch. All the walking I have done this week cause irritation in the urethra and caused bleeding. I called urology who told me to stay in bed and drink more water which is silly, because the more water I drink, the more often the sacks of pee need to be drained. Then sometimes it causes a spasm, and then there’s more blood and tissue scooting along the tube. It hurts. I try not to take opiates and just stick to natural cures, which helps most of the time, but the last few days it took the muscle relaxers, medicinal herbs and tinctures and opiates to try and get to a point of just calm. And the hot flashes are still happening, not as often, but dear dog, just let me sleep. The nephrostemy is a piece of cake compared to the catheter, although the last few nights I wake up with the nephrostemy bag ready to burst because that kidney works really hard at night. Rant over.
SAFE TO RESUME READING
Andy and I made the trip to Baltimore to Johns Hopkins to get a second opinion yesterday. It was actually a pretty easy ride, it took just under 3 hours and we did not get lost once. I had to super medicate for the ride, because I didn’t know what to expect being in a car that Andy is driving for that long in my present condition. Needless to say I was quite comfortable when we arrived at JHOC. Well not really, with my vagina tentacle currently holding me down, I’m not ever really without discomfort. I suppose I could really just say I had a really good attitude when we arrived. Andy dropped me off at the door and I found my way to where I needed to be. I found the Women’s Health clinic on the 6th floor – JHOC is huge. Kind of intimidating. You get a wristband as soon as you enter the building – it’s like going to a show. Then there are there touch screen check-in kiosks when you get to where you are going. I tried, but I couldn’t get registered that way. Of course not. When I finally did get registered, I was handed a questionnaire and herded off to the waiting area. And wait for Andy and my nurse navigator to find me. While I was waiting, another female patient came back to the waiting area escorted by a nurse; she was clearly unhappy and shouting about how she should have gone to another hospital because they aren’t giving her the help she needs here. I’m trying not to judge, but her whale tail draws my attention as she’s huffing and bellowing in a seat four seats away. What I want to say is, bitch this hospital is ranked 6th in the nation in treatment, where ya gonna go? But I just keep answering my questionnaire.
I am supposed to meet my nurse navigator here. She said she’s meet me at 1:30, and when I look at the clock it 1:40, and I realize my ringer is off. I rifle through my purse, and find my phone and sure enough I missed her call. I quickly call her back and let her know I’m waiting, when they call me back to the exam room…she’ll meet me there. The nurse brings me back to do my vitals, and the nurse navigator arrives, her name is Liz. Introductions ensue, and I do some deep breathing exercises and surprise surprise, the combination of herbal medication and meditation has kept my blood pressure low. I’ve lost more weight. I’ll take that. I confess to my use of plant medication, and then of the JHOC minions comes in to review my medical history (because she didn’t have time to go through the 5 discs of medical history I provided to them minutes earlier). I tell the sad sad tale of the tumor gigantica and the first series of chemo and then the emergence of the cyst and its current incarnation and end with me crying that the tubes are not letting me live my life and that I how is this quality of life. The minion is very compassionate. They teach bedside manner well here. I regain my composure and make jokes. The Pietkiewicz Way. When faced with horrible circumstances, make a joke. Make many jokes.
Andy asked me on the way what I was hoping to hear at the appointment. I told him best case scenario would be to have them say “we’ll whisk you into surgery tomorrow and cut that cyst right out” and worst case is that I leave the way I came. I relay this to Liz and the minion, Shanae. I just want to be able to walk and sit and sleep without encumbrances and pain. That’s all. I don’t even care that my days are rather numbered – all I want is for them to be good days. I don’t like the bitch this pain is turning me into, I don’t like that taking a shower or making a sandwich or getting some juice becomes a gargantuan task that requires a logistical plan to move myself and my coterie of pee bags without any tubes catching on something or dragging behind. I just want to not have to wear a long skirt to go out to hide my vagina tentacle I hate the spasms and gasping when the pain shoots through my bladder. I hate that I feel trapped and isolated and incapacitated. I feel cheated.
I feel I am keeping it together pretty well. My mouth is drier than the sahara and I am out of water. Finally the Dr. comes in. What is with the Drop Dead Fred look these days? He’s a much classier DDF. He sits down, and we do a quick review of my history again. He’s a really nice guy, and probably just 30 years old (Ashley F, are you reading this? I didn’t see a wedding ring, you could be a stay at home mom, like for unicorns or cats) He’s rocking a emerald green and royal blue ensemble, so he’s a man of fashion sense and confidence. I like him. Then I brace myself for what’s to come. No, surgery isn’t an option, and not just because I’m a big girl, but because the cyst is smack dab in the middle of the area where I received the radiation treatments when I was first diagnosed. I already knew that I had received my lifetime dose of radiation in that area, which is why there was none this go round. When you get radiation, it forever damages the tissues in the area. This makes them slow to heal and regenerate if you cut into them again. And removing the cyst would require clearing the margins around it which as we know means goodbye rectum, bladder, and vagina, and hello tubes and bags (not all that different from my current rig of hoses and external bladders). And that would entail the removal of a massive amount of tissue in an very damaged area which would be brutally slow to heal and would run the risk of massive infection. The risks of that surgery would far outweigh any minimal benefit and would likely shorten, and without question, diminish the quality of, my life. He would start me on a regimen of more Tamoxifen (boo) and Progesterone which has the delightful side effect of making me even fatter and more miserable emotionally, or since I am not a big fan of Tamoxifen, there is a chemo drug called Doxil which has had some success. Don’t google it. It’s terrifying, but it could work. There’s some other hormone therapy and medications that have shown some success. The prognosis isn’t going to change. I have recurrent endometrial stage 3b cancer, that shows signs of metastasis in the lungs. It’s got a super low survival rate. Recurrent endometrial cancer isn’t one you survive. That said, Dr. T said that the issues I am having now are not really a result of the cancer, and in fact, the cancer is slow growing, and is mostly contained, and that the cyst is the source of all of my woe. For this, we discussed the risk of putting a drain in the cyst for several months to keep the fluid from building up and the possibility of it seeding cancer elsewhere vs. suffering with a catheter forever the duration. As the brutal urine extraction device is painful and unwieldy, I would rather take my chances with the drain. Dr, T agreed that at this point the risk is worth the procedure and said he would recommend that to Dr. K in his notes to him. So hopefully, the visit on the 21st will begin with “let’s pick a surgery date for a drain”. Dr. T said that if Hershey’s interventional radiology still doesn’t want to do it, then give him a call and see is JH’s interventional radiology will. He said the other option is another nephrostemy, but not a really good option. Finally, he said there is the smallest of possibilities that I could participate in a trial that is currently showing promise at JH, and just was published in a medical journal, but he would need a slice of my tumor to find out if there are these special satellite cells in it, because my tumor would have to have them in order to be considered for the trial. Other than that, Dr. T said he would have done exactly what Dr. K did, and would alternate chemo with hormone therapy as my cancer is not aggressively trying to take over. He brought up quality vs. quantity, and I quickly told him that I’m on the side of quality – that being riddled with silicone piping in my excretory systems is not how I want to go out. I would even suffer the permanency of the nephrostemy tube, if only, oh my dog, please, if only I don’t have to live with this catheter.
He also said that I should just continue treatment with PSHMC’s Urology department too. We discussed the potential for self catheterization during the day, and with the difficulty they have had inserting catheters in the hospital because the cyst is in the way, why would anyone think I would have an easier time of it at home? He did say there is a suprapubic catheter that could be inserted into my bladder through my belly, and while there would still be a bag, it would not be brutal and painful like the vaginal one is now. Wicked cruel vagina pee serpent. All I know is that it needs to go. It’s like a fucking albatross, except it’s not around my neck, it’s shoved inside me. So there you have it – even though I left upset that there was nothing else to really do, that wasn’t already being done, I felt validated that my Dr. was doing all he can. I knew that in my gut already, because it clearly pains Dr. K to give me bad news, but now, I’ve heard the same things from another well respected professional, so I can just say fuck off to the next person who says “there has to be something else they can do.”
So I held my breakdown in check until I was in the car, and even then, Andy and I just made death jokes. Being told this kind of news takes days to sink in, the sheer magnitude of what it means is overwhelming. I know I’ve told a handful of people personally, but with shitty news like this, blogging about it is easier than texts or phone calls. I don’t have to hear people tell me their sorry. I don’t have to see sad faces. I don’t want to be around people who are saddened by this. I want to spend my days laughing when I can. I want to say cancer fucking sucks. So I called my little fucking hummingbird friend Debbie, and had the conversation that only someone else who has had to face cancer can truly understand. And at the risk of alienating people, I need to be brutally honest, just give me fist bumps, stop asking me how I am. I have cancer, I’m sick and in pain, that’s my fucking reality and I am tired of pretending that my fucking world is fine. Yes, I can still laugh and smile and appreciate the beauty of the world around me, but asking me how I am doesn’t help me or you. And stop talking about miracles and me kicking cancer’s ass because while it may happen, it probably won’t – and I am not being pessimistic, I am a realist. I’m going to do all I can to prolong my life as long as it fit in with what I want out of life. Please don’t tell me what you think I should do, unless you yourself have been in my situation. Because until you are here, you don’t fucking know. And stop talking about this being a battle, and being a survivor or keeping up the fight, because you what that implies? That if I die, I failed. That I was not strong enough to overcome this disease or that I didn’t have the strength or will to beat this disease. That’s a judgment on me that I don’t need. Bottom line is this: In a perfect world, I will live a long disease free life. In a perfect world, I will go to my next appointment and Dr. K will have a cure. In a perfect world, no one will ever have to go through this again. It’s not a perfect world, and while I am not giving up hope that things can turn around, I am also not going to live in fantasy land, avoiding the very probably outcome. And I am gonna make death jokes. Because I can. I know I’ve said some of this before, but it bears repeating. I am comfortable with dying; I’m not afraid of it, but I am not going to stop living to wait for it. I am not ok with what is happening, but I am not going to sit in the window and wait for death. Support me by spending time with me and laughing with me. I need as much laughter in my life as I can get. And there are only so many names Andy and I can come up with for the hideous hose that rules my life right now. (Thank you Deb, for the conversation that was long overdue, and for letting me rant and not trying to make anything better, punches to you my friend)
Well it’s taken two days to write this. Oh and one other thing – think about this whenever you have to talk to someone who has something unfortunate going on in their lives – don’t say “ I felt so bad when I heard” or “I feel so bad that I didn’t know” – you know what that does? It makes the person feel like they have to make you feel better, which is the exact opposite of what they need. I hate that people get upset when I lay out the facts, because I feel like I am hurting them, and what I should be doing is using my energy to stay healthy. Not trying to make you feel better about my disease. I know it’s all done with love, and with a pure spirit, but it makes me not want to talk to anyone because it’s hard work to make other people feel better about my sad news. And now that I told the story, and vented, it’s time to release the sea monkeys in the pee bags to the ocean via the toilet-ocean pipeline, and then take some more pills and go to bed. I plan to venture out in the morning with Andy to go get supplies, so I can stop suffering from the assault of this nasty tape that is holding on my bandage on my back.
On the positive side of things, you can order replacement catheter bags from Amazon. I got to have onion rings when we went to JH. It’s only three weeks til OWTH in Philly/Baltimore. And since I can’t go to Riot Fest, I can use that money to get my passport. Sleep well my friends, and visitors, and critics. Hug your people and tell them you love them, and tell them how much they mean to you. And appreciate your excretory system. For real. Love you all.
4 September 15 | Categories: c-monster, Philosophizings, Profound Insights, Random Rambling, Soapbox | Tags: afterlife, annoyances, anxiety, biopsy, cancer, chemotherapy, cyst, death, doctors, dying, fear, flying monkeys, laughter, life, treatment | 2 Comments
Never fear, I haven’t abandoned you. I have tales to tell – it’s just been a bit of celebration and whirlwind of things happening since the pufferfish was deflated again and I was enjoying the last six painless weeks, with nary the need for pain medication. That said, I’m a tad down at the moment, and needed to write the following, and though I thought I’d keep it private, hell, why not share, I mean, you’re already familiar with my former uterus.
Stay with me dear ones, I will be back to keep you spellbound with happier tales than what follows. But today, I am sad.
I can’t remember the last time I wrote you one of these letters that I couldn’t send if I wanted to, but the sadness that lingers at the end of summer when the days are perfect but growing shorter reminds me of you. And it may be coincidence, but I keep seeing things that remind me you’re gone but still hanging around, if that makes any sense at all. I miss you. I miss having one person who knew the darkest side of me and one person who understood my innocent joy. I think of what it must have been like in the last moments you were here and if you knew you were about to leave or if you made that choice. Everything changed when you were gone.
It doesn’t seem like there’s a day here when I don’t think about you. And in my mind’s eye, we’re 20-somethings with not a care in the world, scheming, and whether we’d seen each other the day before or months apart, the world was ours when we were together. And in my mind’s eye, I remember every detail of the day it crashed around me.
I wish I could mail this letter to you like I did so many others – tear stained, or gleeful, excited, full of wonder, sharing every detail of my broken hearts and plans for the future – fat envelopes, stuffed and sticker-covered and keeping me connected to you despite thousands of mile and minutes. Stories of new adventures and days I wanted to close my eyes and have it all be over.
I know it’s a matter of time until we find our paths crossing again. I thought it could be in this lifetime, but probably the next. Just know I’ve never forgotten you my friend. And I am still mad you left me, but I understand that it was time for you to go. I just wish I could have one more hour to put my head on your shoulder and cry until you were covered in snot and slobber, and have you take the hurt away for little while. Fucker.
26 August 14 | Categories: Profound Insights, Random Rambling | Tags: afterlife, alcohol, amusement, annoyances, bear, bears, blackness, carnivorous kangaroo, cold. flying monkeys, death, depression, dreams, flying monkey, fresh, fun, happiness, joy, laughter, overdose, pain, pufferfish, rambling, random, regret, restless, sadness, sorrow, survival, thingsIlove | Leave a comment
Today was Dr. day. I nearly overslept. I have had brutal pain in the bones of my upper thighs for the last three days. Last night I gave in and took some percocet. More than usual. Then I fell into the sleep only a poppy can bring. And didn’t wake up until 20 minutes before I had to leave to get to the dr. Long story short, I made it.
Appointment number one went well. Okay, so I waited nearly an hour to see the Dr. but my blood pressure was super normal. 124/86. So my blood pressure problem? Going to the Dr. in the afternoon instead of the morning. We spent most of the appointment talking about me being fat. Seems to be the center of most dr. visits with my PCP. If only I could apply the great life coaching I do for everyone else to my own existence. I would be in such a better place. But alas, the only knowledge I use for my benefit is my vast knowledge of random facts. Like string theory. Or Einstein’s special theory of relativity. Or that reindeer blood has an antifreeze-like quality. Or how to make the world best grilled cheese sandwich. Important things, of course, but without much pertinence to my day-to-day existence. Unless I am approached by a random mobile Jeopardy competition. Then I will kick ass.
Back to the dr. thing. Since I won the battle of blood pressure meds by proving that I don’t really have high blood pressure, I don’t have to go back for 3 months. Win. Of course, by the time I was released from appointment number one, it was already time for number two. I scampered away to my car and off to that building. Of course, I arrived right on time and then waited for another hour to be seen. Now, normally, waiting at Dr. K’s office isn’t bad, being that they have free wifi and all, but you know, technology is the devil. Two elderly ladies next to me had laid their hands on a kindle and were loudly strategizing over their next level of Candy Crush. Now, I know a lot of Candy Crush addicts, both those who are open about their use, and those who crush candy in the shadows. These ladies were very deep into their addiction, whining loudly over colors that weren’t working in their favor, as well as whining about how they had to see the Dr. My Dr., Dr. K. And I silently prayed to the universe to please please please let me be called first, because if they get in first, it’s going to be 4pm before I see a Dr.
I hear my name. I run. Okay, well I walk to the nurse and off to get weighed and shit again. Still fat. I do like Dr. K’s schedule better, but I’m still fat. Blood pressure is higher. I blame the Candy Crush Crones. But it’s still normal. I ask how big Dr. K’s posse is today. Only one med student. That’s cool. I wait.
This is were things start to go bad. In comes my treatment coordinator, Anne. I love her. She makes me laugh and she’s had cancer, so she gets it. She missed my last appointment since she was in Europe on vacation but she’s here now. She sits down to chat, not unusual, but doesn’t seem to be her uber-happy self. We chat around the fact that I am her. She says she’ll find out what’s up with Dr. K, and be back. She comes back and announces I have to submit to probing this visit. I don’t know why I think that I am going to escape it – but I cling to the hope every time I have a check up. I prepare for the invasion, and Dr. K appears. Hugs all around and then legs up in the air. There’s a poster about commitment on the ceiling. Really? Commitment? I think I’m pretty committed if I keep coming back for this kind of fun.
We usually have a chat about my tattoos, the weather, what’s going on, etc, but this time it’s all business. CAT scan shows what he thinks is a cystic mass. Or a mass that is probably filled with fluid. At least that’s what it looks like from the scan. He thinks he can feel it like – like puffer fish full of fluid, at least that is what he thinks. He’s not really rocking the whole “this is a piece of cake” attitude about this; he says we will get someone in there with a needle and see if we can drain this thing. If that doesn’t work, well, he’s got some other ideas about what to do to it. So Anne will get me set up with the needle people, and then he’ll see me after. Quick hug and he’s off. Noticeably absent is the confident “you’re doing great” that usually ends my visits. Anne hangs back, and tells me to hang in there, if they can drain it, the fluid with be sent to the lab to see what’s going on, and if they can’t they’ll just send tissue. Whatever it is, I just have to be patient and think positive.
Think positive. Ha. If only it was that easy. It’s not like I won’t try. But when you know there’s a baseball size glob of tissue or puffer fish full of fluid in the spot where your uterus once was, it’s kind of hard to think rainbows and unicorns. I am not going to sink into depression while I wait this out, but I’d be a liar if the horror of having to do radiation and chemo again didn’t loom heavily in my mind. But I’ll try. At least I got a new prescription for percocet. Maybe, just maybe, I can get some blood this time if I have surgery. One can hope. See, there it is…positivity. Finding the good in being cut open and gutted for a second time.
You might imagine that that was the end of my trials today. It wasn’t. I then went to the market because of my unnatural craving for Irish soda bread. None to be found. I grabbed what I believe to be a white wedding cake and a peanut butter egg which turned out to be a red velvet cake egg and a caramel egg when I bit into them. Then Andy ate half of my steak quesadilla from taco bell. Still, despite these disappointments, I fight on.
Well my lovelies, laundry beckons, as does sleep. I have to return to the labor force tomorrow. Pleasant dreams my friends.
24 February 14 | Categories: Profound Insights, Random Rambling, Uncategorized | Tags: cancer, cyst, death, doctor visit, flying monkeys, hope, laughter, object, pain, positive, zero to hero, zerotoheroblog | 3 Comments