welcome to the danger zone

Posts tagged “afterlife

And Then It Was November…

Well happy people, it’s my birthday month. It’s also time for seasonal affective disorderr to rear its ugly head. The time of year when everything dies and I feel the urge to sing along with Morrissey and Elliott Smith. But surprisingly, increasing my antidepressant seems to have stayed the invasion of winter blackness for now. I tried taking my new dose for a few days, and it made my head feel all scrambly, so I decided I will alternate every other day, one old pill and one new pill. What, you say? How dare I disregard my physician’s instructions? I do it all the time – I know my body and brain better than any doctor, especially my brain, and it says I’m doing what I need to. Although it also was nice that my new palliative care doctor agreed with my method of medication administration.

Oh yeah, you want to know how that went, right? Surprisingly well. I really like the Dr. – she reminded me very much of my good friend Jess, with her manor and her tone, and I felt very comfortable. She was also very cool about my morbid sense of humor, and asked all the right questions without being intrusive. She is going to get me hooked up with a counselor who I can vent to on a semi-regular basis who will listen without trying to make me feel better and who will not give me “sad face” or pat my fucking arm. This is very comforting. We talked about end of life planning, what I should look for in terms of my disease taking a downturn, living wills, and what would be “my line in the sand” in terms of when I would say enough with treatment, and again, it’s quality over quantity. Her office will be the one I call for pain meds and if any new symptoms come up, or I want to discuss options for care. I got all the paperwork to make Andy my power of attorney and provide a living will – I hesitated to fill it out at first because I wanted to make sure he was okay with making those decisions. I don’t know who else I could trust with them – I don’t know how many people would honor what I want without question. Andy said he’s fine with it. All I know is that I don’t want to be come mean and miserable and trapped in a hospital bed to die. If I have no control like I did when they forced Dana inside and drilled a hole in my kidney, that’s one thing, but if there are options, I want to be in control of when and how I leave this particular life cycle. My biggest fear is to find myself unable to say “turn those fucking machines off’” and being a human vegetable. Okay, my biggest fear is being buried alive with clowns, but that’s my second fear.

I’m feeling better lately. I had a few days of a being a bit out of it after my flu shot. My joints are achy today, but I don’t know if it’s because of the flu shot or because I was cleaning in my lame, not a lot of energy way. I managed to clean a 4′ x 3′ area today, and do a load of laundry. I am getting better at throwing things away. You can’t even begin to understand what it’s like to have to think about holidays in the context of will I even be around to use this next year? Or things that I was saving for one reason or another, I now look at and say there’s really no reason to hang on to this anymore. It’s liberating and sad at the same time. Don’t get me wrong, I’m not miserable over it – it’s just thoughts and emotions and they are all just temporary. Just like not that long ago I didn’t even want to be awake, and I just kept reminding myself I only needed to get through today, until the blackness receded and I got my ass out of bed and started moving again. All I am hoping now is that: 1. They pull this tube on Tuesday and 2. That when they pull it I don’t end up in bed for 2 or 3 days like the last torture session. The benefit is on Saturday and I still have some straightening up to do, and jello shots to make. The California girls get here Friday, and then the fun starts. We’re going to Shady Maple on Saturday for breakfast before the benefit because those silly Mennonites don’t work on Sundays and they’re closed. Good times. Maybe this time I can get a stuffed black mamba or maybe a vampire deer for my collection. Hmmm, Paige is getting my scary baby collection after I’m dead, I wonder who have’ll dibs on the stuffed animal predator collection. I know Andy doesn’t really want a stuffed komodo dragon or wild african dog.

I try really hard when I am around people who give me sad face not to talk death. The problem is that it’s constantly on my mind. With that said, it’s not like it’s all doom and gloom and I’ve accepted that outcome as final and non-negotiable. I think anything is possible – I think about my stupid pufferfish every day and visualize it growing smaller and smaller and picture it vanishing. I think about how the human body is an amazing self-healing machine and if it’s meant to be, I’ll be around as long as it’s necessary to learn whatever I was supposed to learn in this life. There are no real certainties with this disease. I mean nothing was worse after cyst drainage – things actually improved with the departure of Dana and the impending tube removal. Yet you don’t ever stop thinking about what is happening in your body and trying to figure out was this something that you brought on yourself, or is it just one of life’s lessons. You start trying to figure out why this is happening to you. It’s such a rollercoaster and right now it’s like I am standing in line for my next go round.

Then there are the multitude of questions – am I doing enough? Should I get a third opinion? Maybe I should stop eating bacon and candy (gasp). More fruits. Veggies. Get back on my tea regimen. While I was checking in at the Cancer Institute the other day, there was a sweet old lady behind me who asked me about my OWTH hoodie – as we started talking we both discovered we were patients of Dr. K and both adored him. We started talking about second opinions and how it felt like we’d be cheating on Dr. K if we got one, but that people around us encouraged us too. She has had ovarian cancer for over 5 years – and it was nice to talk to someone who has a very similar stupid disease. We went our separate ways, she off to do blood work, and me, off to my appointment. I have to say I am not as fond of the new offices as I was of the old. Maybe because there are people with all sorts of cancers in the waiting room of the new offices, and some of them are very clearly very sick, and it reminds me of what is to come. I don’t want to be that person. It makes me uncomfortable. It also makes me glad that Dr. J left Hershey before I found out about the recurrence. I am glad he never needed to know that the cancer was back, and he got to leave thinking I was cancer free. Although I wonder if Dr. K ever mentioned it to him, since they were friends.

I know I am just rambling now. I want so badly to go to sleep but I had a bit of a row with Andy earlier and of course it was right before I was to fall asleep. Naturally, I got fired up and sleep wasn’t going to be coming anytime soon. Of course, he’s upstairs snoring, and I am down here trying to get my brain from firing on all cylinders so I too can snooze. I am both excited and stressed about the benefit on Saturday, and then the next week is my birthday. Of course, I want it to be a fun filled day, because I don’t know if there’ll be another one – in my gut I believe there will be, but I don’t want to wait to celebrate until I find out. I know this all sounds sort of sad, but trust me, I really am in mostly a good headspace right now – these are all just thoughts that I am stuck with every day, and they no longer are good or bad, just are. On the good news front though, Ranae’s mom had a pet scan and has no new cancer and can stop chemo – which is fabulous news. When I told Andy, he said, well let’s hope you’re next. Let’s hope. Today is one of those days where I feel I can face anything that is ahead. I appreciate these days because I know the other days when I feel like the floor has dropped out beneath me rip out my soul. If there’s one thing this fucking miserable disease does, it teaches you that there is a very broad spectrum of emotions and states of mind out there, and it will make you feel each and every one of them.

Okay, finally I feel like I can lie back down and curl up to sleep. So far the evil Tamoxifen is not giving me too much trouble with hot flashes. While I still get them, I believe the increased Effexor is keeping them in check. I still play the blanket game every night, and I still wake up damp with sweat every morning, but it’s not so bad during the day. The one thing I really hate about Tamoxifen is that it make my boobs bigger than they are. I really miss my perfect B cup boobs from the time before Andy. I hate slinging these things around, tucking them in to bras and then releasing them like Kraken when I get home and can take the boob harness off. But again, I should watch what I say before they become a source of pain and anxiety.

And now I must depart for my bed. I’ve finally watched all of Season 3 of Hemlock Grove, which just left me anxious for the next season and now I will have to wait for what seems like forever. So now I just watch reruns of last season’s Vikings and hope the new season starts soon. I’m still making pumpkin hats and making some cards tomorrow, and going to finish coffinizing the babies tomorrow. I’ve only got 8 more to go. I forgot how many I really had. Lots of babies. I did notice that one of my babies is missing her rat and another his bloody cleaver. And when I went to take them out of the storage bin, some of them had taken their shoes off. I wonder what was going on in there. I hope no one tries to steal one of them at the benefit – I’ll have to cut off their hands. I also thought about offering my gargoyle collection for table decorations – I forget how many creepy things I collect. So scurry off now, and enjoy your night or day, or afternoon, as will I – and keep sending the good vibes. And for those of you who send me cards, please continue – I love getting them in the mail, and they always seem to come at a time when I need them most – especially the ones from Jeanne. I’m sure I’ll be back later this week before this benefit to tell you all about how I was brutalized and made to cry by the kidney people when they go in after my tube. This time I’ll be taking the oxycodone with me. Delightful dreams my friend and happy adventures. Peace.

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100 Reasons to Be… (Fill in the Blank)

I needed a list to remind me. It’s way too easy to get sucked in to the black hole of despair.

  1. Andy
  2. Friends
  3. Family
  4. Spring
  5. Fresh Air
  6. Long Fast Drives
  7. Roads with lots of curves and air
  8. Fast Cars
  9. Corgis
  10. Music
  11. Cheese
  12. Blankets
  13. Netflix
  14. Cemeteries
  15. Sunsets
  16. Sunrises
  17. Birds singing
  18. Coloring Books
  19. Pizza
  20. Ice Cream
  21. Badgers
  22. Llamas
  23. Babies
  24. Komodo Dragons
  25. Laughter
  26. Tears
  27. Warm Showers
  28. Swimming Pools
  29. Naps
  30. Flowers
  31. Vikings
  32. Good Movies
  33. Rainy Saturdays
  34. Christmas
  35. Eyebrow Waxing
  36. Dreams
  37. Leggings
  38. Memory Foam Pillow
  39. Hugs
  40. Sleep
  41. Oceans
  42. Swimming
  43. Meatloaf
  44. Cookies
  45. Warm Breezes
  46. Feeling Healthy
  47. Puppies
  48. Thunderstorms
  49. Rain
  50. Rainbows
  51. Giggling
  52. Bad morbid jokes
  53. Laughing with Andy
  54. Cliffs
  55. Shooting stars
  56. Memories
  57. Sandals
  58. Rolling down hills
  59. Fainting goats
  60. Painting
  61. Writing
  62. Dancing
  63. Bubbles
  64. Tattoos
  65. Pedicures
  66. Reading stories
  67. Reading
  68. Poetry
  69. Horror Movies
  70. Chocolate
  71. Chocolate Milk
  72. Journaling
  73. Splashing in puddles
  74. Letters
  75. Old pictures
  76. Being alone
  77. Learning
  78. Halloween
  79. Barley sugar pops
  80. Sweet corn
  81. Peaches
  82. Cherries
  83. Whoopie pies
  84. Ginger beer
  85. Vodka
  86. Herbal medication
  87. Lavender
  88. Kites
  89. Hoodies
  90. Road trips
  91. California
  92. Puppets
  93. Breakfast
  94. Cake
  95. White chocolate peanut butter
  96. Stars
  97. Sleeping with the windows open
  98. Chanting
  99. Tea

100. Heartbeats

Well there it is. I’m not sure what it is a list of other than good things. I can get through today. And I am willing to give tomorrow a shot too.


Tarpits, Minefields, and the Joy of a Tuesday

Well here it is, Tuesday. I feel like I have slept most of this month away. I am up and awake now, before 10 am, out of bed, which is crazy, because the only reason I was getting out of bed before 10 am for the last three weeks was for dr. appointments and to puke. It feels strange and wonderful, and shaky. I’m craving a mint hot chocolate, but today is shower day, which I can’t take until Andy is awake to do a new bandage on my back.

So what’s new in my world? Lots and nothing. I’ve been down with the sickness pretty much every day. I feel better one day, and think I can actually be social and do things, and then someone is unknowingly carrying a rare virus that is usually defeated quickly by your immune system until it gets to me, and then hello, it’s a human with very little resistance, let’s dance. I am sure I’ve endured the black death the last few days, and probably some extinct pox. I’ve puked more in the last 30 days that I have in my whole entire life. And that’s with using appropriate nausea control techniques. And the things I have puked in and on are countless! Plus let’s not forget that tube in my back that gives me an added thrill every time my automatic nervous system spasms. It’s good times.

The tube in my kidney. What a pleasure source that bad boy is! I did get a mini-reprieve with it, though. When I went in for my tube change, I laid down my case for why it should come out, and almost won. But using logic, my plan was confounded. We agreed to leave a tube in, capping it off, sans the pee bag, for two weeks – if my kidney goes back to doing it’s job without complaint, then they will pull it. In the meantime, I’ve discovered the sweet spot on my hip where I need to place my hand when I need to cough, sneeze or breathe deeply, so I am not thwarted by pain.

But let’s talk about pain. Last Wednesday, I went in to interventional radiology to have the tube change done. I took a couple oxy and some medicinal herbiage before the ride so I’d be more comfortable when I got there. I was. Then they promised me some more medicine, when they did the procedure. Unlike the draining of the cyst, I don’t believe they give you any medication to help you be drowsy. No, they are very kind to you, promising pain relief until they wheel your ass in the procedure room. Then they tell you to get on your stomach, put your arms above your head and trust they will not hurt you. They lie. First they start poking you in the back with needles they claim are local anesthetics. Just a pinch they say. Just a pinch. Just a pinch of the claw of giant crustacean tearing into your flesh like it intends to eat you. I stay surprisingly still for the first two shots. Then the third hits a nerve or something and I elevate three feet from the table and mutter “ouch”. I think the team realizes that they might have hurt me. Now, I am shaking from the pain, and it’s freezing in there, so I shake for the rest of the procedure. They took out the old tubing and put a smaller less cumbersome tube apparatus in there. They did a really good job with the bandage. I get to roll back on my back and go to recovery. I’ve done really well they tell me. I just want to go home. They must have given me fentynal at some point because I’m mostly not in pain now. I get dressed and they even let me walk up to meet Andy.

I was hungry. I wanted one of those turkey and cranberry sandwiches from Panera. I went in with Andy at first, but realized I needed to be back in the car, so I gave him my order and went outside. He brought out the goods and I ate a cookie and some lemonade. I thought I was going to be fine. Just not really hungry. The sandwich could wait. Then the meds started to wear off. I didn’t bring any with me. In the next ten minutes, my pain went from 2 to 2.4 trillion. Every inch from my waist to my neck on the right side of my body was a fucking minefield of pain. I do not exaggerate when I say that speaking hurt me. Breathing hurt. Coughing was some primitive torture activity. I couldn’t cry, I couldn’t talk, I could only whimper like I was hit by a car and left alongside the road to die. I wanted to die. I wanted fucking morphine.

Finally we go home, I thought I was going to be okay. Then I tried to get out of the car and walk into the house. Every fucking step was a new adventure in torment. I got in the house, and faced the steps where my safe bed and vial of oxy were waiting for me just a few hundred steps away. And every step found me crying and moaning and doubting that I would ever get to the bed. But I did. I shoved some oxy in my mouth, and advil, and tried to smoke but couldn’t really inhale. Then I tried to lie down. That was not easy. I literally had to throw myself down on my right side and not move from that position. I told Andy if I didn’t get some relief in an hour, that we would need to call an ambulance. I was having really bad pain in my chest and back and I was scared it was serious. But I also tore cartilage in my chest before and it often would be painful if I was in a position that pulled at it again, so it could have also been that. I was hoping it was that. I nodded off for an hour and when I woke, I wasn’t in as much pain, so that was good. I was still paralyzed and unable to move, but I was no longer in fear of imminent death. Another four hours of sleep and I was almost able to move. By morning, I could actually sit up. A few more hours, and I could walk. Things were improving.

I couldn’t make my appointment with palliative care. Reschedule. I didn’t have the strength or the energy. I had to blow off the Bouncing Souls show that I was so looking forward to. I shouldn’t complain, my kidney was working and I could move and most of the time, breathe. I was still having trouble coughing and sneezing. Then the black wave of depression crept into the space where pain had been hanging out in my brain, and down, down, down, way fucking down, we went. If you don’t have depression, you can’t understand. I try to make it as visual for the untainted as I can, and this was like the La Brea tar pits of depression and I was a fucking woolly mammoth. It was all over except for suffocation. That sucking quicksand of sorrow ate me up, and the crying started. Without belaboring the incessant crying and snot-blowing, let’s just say thoughts during the breakdown run from “I’ve failed as a mother, and Andy will hate me for the rest of his life” to “what the fuck have I done with my life?” to “I’ll never get that PhD, great work dumbass.” Until you really spend a lot of time reflecting on your life and the possibility of a very short future, you can never understand that level of sorrow or failure. People can tell you otherwise for hours, but you can tear any positive self image down to smoldering ash in a matter of minutes when you start to consider things that will most likely never happen because there’s just not enough time. I’m just now starting to realize the psychological impact this disease has on me. I keep it together most days, but when this shit crumbles, it goes down hard and and fast.

I hate to keep harping on this but I feel I have to remind people that I write this to sort through what is in my head more than anything else. If the details of this fucking monster inside me helps someone else, I am thrilled, but writing is always for me. I love that people read it, I love that people comment on it, but I love the way I feel drained and empty when I stop writing, like all the shit that swirls in my head has finally been released or at least organized. Writing also scares me – when I see what I have only been thinking appear on the page it’s like tearing off a scab and wondering if it is ever going to stop bleeding. How raw this gets depends on how much pain I am in when I write – and sometimes I hold back because I can’t face another entry that is just all about my grief, and I know I shouldn’t. I can’t – because there’s no where else I can go with this. I know there are therapists, and I know I have friends, but let’s be honest here, very few people pour out what is really inside to anyone else, because we all want to keep our pain, our shame, our fears hidden. If you don’t, I admire you – I know I have secrets no one will ever know.

So now it’s evening – I went out for a bit today in the car. Visited work until I started to feel nauseous and then took a ride and spent some time in a cemetery until I felt better. Then I drove and cried and screamed and came home exhausted. Smoked my nausea away, and hoped for sleep, but no, my feet are twitchy and my legs are restless and so is my brain. Part of it is knowing that next Monday we’ll be talking treatment and progression (or hopefully, lack of progression) of this stupid C-monster and the damn pufferfish. And as many of you know, my friends are hosting a benefit for me on November 7th here. Some of my oldest and dearest friends from California are flying in and I am thrilled – it’s going to be amazing to see them all again. And I am sure many of my dear friends that live here will also be there and I am so blessed and grateful that they are doing this for me, but there’s a huge part of me that realized just now that it’s like saying goodbye to my loved ones and I don’t know that I am ready for that. I know that sounds negative, because anything can happen, and I do believe that, but I am also very much a realist who prepares for the worst, and the very thought of maybe never seeing them again after that weekend tears my fucking heart out. Just like every day that I wonder if I have told Andy every thing I want him to know – and hope that he knows that he changed my life and I love him more than I have loved anyone in my life. That, my friends, is my nightly terror – leaving my son alone in this world. I don’t care about anything else. I just want to make sure that my baby is going to be okay and that he knows how sorry I am that all this has landed in his lap during the time of his life when he should be discovering what he loves and who he is and he’s stuck taking care of me. And the tears flow again.

I was trying so hard to keep this light and fucking positive and I can see that that has been a huge fail. So much is undone. And you’ll think to yourself, well get out there and do it! And the reality is that there are somethings you don’t just “go out and do.” When faced with what you are going to do, you have to let go of the dreams you had that can’t possibly fulfill because it’s just not possible. And you grieve for all of them. So much grieving. And even as I type this I’m trying to self-talk myself calm – I want to bolt and stop writing because it hurts so much. But this kind of pain is progress. Unlike the physical pain – which is nothing more than annoying. And at this point, more of an annoyance than a hindrance. There’s that at least.

Well, I am spent for tonight. I’ve tried to enhance this post with some cemetery pictures from today. It didn’t work. Maybe I didn’t save them in the right format. Who knows. The featured image was supposed to be this crazy tree that is way at the back of a pretty hidden entrance to a cemetery I frequent. It always has artificial flowers attached to it. And it’s updated regularly for the season. I like to sneak into the cemetery that way so I can check out the tree. People don’t appreciate the subtle beauty hiding in the places most people ignore. I’m always going to find my happy in an interesting cemetery. It’s like water is to my soul. Maybe Saturday when we go to Philly, I can convince Andy that we need a stop at Laurel Hill…it’s such a beautiful place in the fall. Just so I can take a drive through and enjoy the trees and death and decay. I am going to head to sleep, so I wish you sweet dreams, cupcakes. Thank you and come again.


Just A Little Bit Before I Try to Sleep (Again)

Ha! Tomorrow I go to interventional radiology to get my tube removed. So, ok, maybe they are referring to it as a tube change, but I am going to present a very well formulated argument about why it needs to come out. There are totally legit reasons, aside from the nagging pain and tugging hose. For example, my immune system is constantly on high alert preventing infection and trying to heal the holes in my back that don’t exist there normally. All that energy spent on fighting fungi and plagues and rare disease spores doesn’t give me much energy for anything else – I’m good for about a day a week. My immune system would benefit from a break and since my bladder provides me with nothing but happiness and joy these days, it’s clear emptying the guts from the pufferfish, was beneficial in relieving the hell of my pelvic region. So, using logic and reason, I have also deduced that my ureter is probably not being crushed any longer at this point in time, in which case, we can remove the hose from my back.

I apologize for my lack of writing – most of the last two weeks I have been horizontal, except for an afternoon in Hershey, and D4 last Friday. I just opened the computer for the first time since Friday. I’ve been subsisting on chocolate milk, crunchy Cheetos and mac and cheese – and a very delicious and fiery taco that Andy brought home from the taco truck he found. I have developed an unnatural addiction to chocolate milk in the last two weeks which must mean my body was lacking something. I had a few days where I plunged into darkness and cried endlessly and sporadically and could only sooth myself by taking long drives in the car and screaming in peaceful forests and valleys. I expect that will occur again after my Dr. visit on Thursday with palliative care. So I’m downloading some more music to my phone. And let’s not forget it’s FALL, which means things are dying everywhere and winter is coming and as we all know, this has never been a cheerful time for me emotionally, because not only is everything dying around me, the people who have meant the most to me who have gone to another place or body, left me in October or November. And then there’s all that turkey death. Dead, albeit delicious, turkeys everywhere. I hope I am up to cooking Thanksgiving dinner this year for the boy and I. Maybe we can have a thanksgiving picnic/food fight like we did when he was two. Good times.

Okay, I’m adequately drowsy now so I can get some sleep before it’s time to get on the road. I can’t have anything to eat or drink after 6 am, so I have to get up before then for my chocolate milk and toast. Or I’ll end up trying to bite a nurse when I get hungry and that never goes well. I’ll try and be more consistent about this blog. I mean I need to write more just for the sake of clearing out my head – I just have to be able to sit up to do it, and that’s been sketchy lately. Chemo never made me as weak and sick as I have been these last two weeks. I am just glad I kept the circle I infected very small because no one deserves to suffer like that. So my friends, and visitors, and passers thru, please send positive thoughts and vibes and animal/insect/fish/vegan sacrifices my way, so that the frankentube is history as of tomorrow. I promise more stories in the days to come. For real.


It’s Like A Monkey on My Back, Except No Monkey.

I was trying to coax myself back into a blissful oblivion, which is evading me tonight. The last few days have been pretty much nothing but tears when I don’t specifically do something to keep myself busy. Of course, as I was sitting here, reflecting in the warm glow of a decorated bic as I try not to burn my finger, I noticed the flashing red and blue lights just down the street on the corner. Of course, that window has an air conditioner in it, and made it impossible to be a gawker. Since I wasn’t gonna be able to sleep with the lights flashing anyway and I wouldn’t know what was going on unless I went down the stairs to the porch, I figured I would write and cry and vent because at this point I don’t know where to go with this shit. I don’t even know what it is…all I know is that it’s a fucking huge ache I can’t stop.

I wish I had an easy answer, but none of this is easy. One thing goes better, another falters. A million questions suddenly need answers, there’s a million wise things I want to tell Andy and a million things I want to leave behind for him and any future progeny. I hate seeing him so sad. It kills me that this is killing him. I am afraid of who will be there for him when I am gone. Or who won’t be. And that’s the pain nothing touches. I can’t smoke or swallow that away. And it’s more physical that anything else I am feeling.

I would trade anything to just have normal back – the daily bullshit, the humdrum, the worrying about just bills and heat and easy shit like that. If I could just undo what’s been done. I just want to wake up and have it be okay. To be okay.

Being sick last week made me realize that it’s going to get really bad in the coming months, and I don’t know that I have that kind of strength. And before you tell me how fucking strong I am and all that other supportive shit that I appreciate but right now don’t care about, I know me better than anyone, and I know right now, I am not sure of anything any longer. Other than I now want this fucking tube out of my back too. It’s going to make it impossible to drown in the Pacific Ocean if I can’t get the tube underwater.

That was a joke. Kinda.

Look, here are the facts. You may want to stop reading this blog and forget you ever found it. Because it’s going to get more raw and more painful because this is where I go when my head is so full of crazy thoughts that only moving my fingers across the keyboard can help line them up and get it together. Again, it’s not about needing people to console me or make me feel better. It’s about me making me feel better in the way I know best. I am not going to lie and tell you that I am going to be a spirited fighter until the end. I am not going to be the smiling turban headed warrior all those fund raising ads show. I don’t know what I am going to be. I might be a sniveling fucking crybaby who feels sorry for herself. I just know that all I keep telling myself is one more day. Just one more day. You can get to tomorrow. Some people would be thrilled to have one more day. Suck it up whiny bitch.

And I always feel so ungrateful. People do nice things for me and I am thankful and I appreciate it, but sometimes it’s like I don’t feel like I show it enough. And then the guilt comes in. I wish cancer was just about physical pain. That I can manage. The psychological part not so much. Even with my vocabulary I don’t have words that describe it – it’s like a million sharp daggers that tug on the strings of some weird emotional harp that’s crazy out of tune. I don’t know what I want. I don’t know who I am. I am broken and trapped and very much afraid. And I can’t even tell you what I am afraid of. If you knew the truth of this, you would know why that is so scary.

I’ve cried as much as I can right now. I’ll wake up in a few hours with slimey sticky eyelids and a clogged nose. I’ll lie there listening to the birds and see it getting lighter and everything will seem normal and then I feel the stitches tug in my back and it all comes back.

One more day. Lots of people are suffering more than you are, you whiny bitch. You should just stfu. And I’ll tell myself one more day.

Johns Hopkins called today. No trial for me. The cancer’s rare and pretty and all, but not what we’re looking for. At least it was a shot.

Next Wednesday my back tentacle is scheduled to be replaced; I am going to advocate removal. Maybe I will feel better once my body is no longer is a constant state of stress. Next Thursday I see palliative care. The assuring you the best quality of life people. I see a huge breakdown coming when I go there.

I didn’t want this; I don’t want this. I am going to try to close my eyes for a few hours before the sun is up. One more day.


Pufferfish Takes Its Show On The Road

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.


No Bueno II – Return to Oncology Hall

Calvin-gets-existential

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!!


Shit Just Got Real. (or Well, That’s Fucked)

I saw a dead porcupine the other day, near the center divider of the road, on my way home. You almost never see dead porcupines. I was tempted to go back and get some quills, but decided that it would not only be risky but also gross, and vetoed the plan.

And before we get to the meat of the story, the main event, the moment you have all been waiting for, I feel compelled to inform you that there are certain species of butterfly that subsist on the tears of turtles and alligators. I found the idea of drinking tears rather poetic. And as I was crying on and off most of yesterday and today, I was romanticizing the idea of beautiful butterflies landing on my eyes and drinking my tears. Then I remembered that butterflies are bugs, and bugs are creepy, and that I would appreciate butterflies more as they flutter about me, rather than dipping their proboscis in my eye sockets to suck away my tears. So much for that.

Yes, yes, the scans. You want to know about the scans. Well, I am comfortably medicated now that I can write about it without histrionic weeping. Can you be histrionic if you don’t have a uterus? I don’t know, but for the sake of good writing, let’s pretend we can. You’ll just have to wait while I tell the story of scan day, because there is a story, although it may not be my funniest adventure to the hospital, it was still a bit amusing.

To fully appreciate my day, first I’ll set the stage. The subee needed breaks for over a week. The car would make this horrible woosh, woosh, woosh sound when going forward, followed by a terrifying grinding sound that pulled at the hair at the back of your neck every time you had to brake. It was horrible – it was supposed to be fixed yesterday, but as usual, plans made with my family don’t always work out the right way. So I had to drive the sad subee to Hershey myself.

I was having my CT scan done in the main hospital instead of the CT center at Hope Drive near my dr. old offices. I won’t make that mistake again. At least I still had my “I have cancer” parking pass so I can get premium parking near the building. (I can also get free valet parking but I am too embarrassed by the metallic grinding and whirring of the subee to consider letting someone unused to the sounds of destruction drive her) Unlike the other CT scanner office, to get to this department, you have to walk walk walk walk all the way to the middle of the hospital and then go downstairs and walk some more, whereas the other is just inside the door. When finally I arrived, it was hardly busy, but I forgot we were in the hospital, and that hospital patients get first dibs on the meat slicers, and they only have 2. Which makes no sense, because there’s always people waiting for scans, so a third one would come in handy. I also forgot that in the radiology dept of the the main hospital, there’s no cell service. So I can’t answer all of the text messages I got that morning, even though now would be the perfect time to do so. Once I am checked in, I want to read my book, but dumb ass left her glasses in her purse in the car. My stomach’s been wigging out all night, but I don’t want to go to the bathroom because they will most certainly call me when I do. In the midst of this there’s a great commotion to get the Hoda and Kathie Lee show on because apparently Frank Gifford, Kathie Lee’s husband, had died, and it was an absolute priority of every senior citizen to get the dish. No cell service, no glasses, and depressing TV. This does not bode well.

Finally I am called and shepherded away to the slicers’ area. The nurse put an IV in. The IV itself was painless, but I don’t understand why I must be brutalized with tape??? I know you have to keep the IV in, but for dog’s sake, lighten up with the bandage. Once I am prepped, I go back to waiting. Wait wait wait. Then I get called and off I go to hop on the table. The nice nurse begins her questions, and I tell her I’m a bit of a pro at this, and no allergies, no diabetes, no kidney disease, blah blah blah. And then it’s strike two against getting a scan here again…NO STICKERS. The machine has no stickers. Not a pink bear, or pufferfish or Mufasa or nothing! What am I to look at while the machine scannerizes my insides? Sigh. The nurse explains it’s a brand new machine and they haven’t gotten any stickers yet, because it’s new. I tell her I am not sure I can do this without Woody and Buzz, but strong soldier that I am, I brave it. Slide slide slide, whirr whirr woosh, and I’m done. The nurse removes the IV and then bandages my arm with that cool self gripping tape I love but wraps so much of the tape so tightly around my arm, that I believe my circulation is cut off. And off I go.

I was dreading these scans. I barely slept the night before, and I wasn’t able to have anything to eat before the scan so I’m a bit shaky. Now they are over, and I just have to wait for the results. That should only take a few hours. I wrestle the tape and gauze from my arm to see that I will have several delightful bruises, Yay.

I did some grocery shopping, hung out with my friend Kelly and her boys, ate a donut, stopped to see Jenn and get some more quilts for clients at work, all the while, periodically checking for my results. Why are they not posted? This is making me nervous. Delays are never good, it means they need other people to confirm the results. Finally, about 3pm, the results are in. And I take a peek. And it’s no bueno. I was hoping that there’d be no change, or when I was being wildly optimistic, that the tumors had vanished. I knew that it wasn’t likely since my pain came back, and I could feel the bloating in my belly. But I had hoped.

I’m blogging about it because I’ve told the people who needed to be told. Once again, I am keeping the news from my dad, as well as brothers Leo and Stanley, because I don’t want them to upset pop. I sent a text to Mike and Alan. As for Janie, my “sister”, I doubt she even knew I had cancer the first time. If I am not sporting Andrew Jackson or Benjamin Franklin on my belly and you can use me to buy beer, she wouldn’t recognize me. Not that this causes me any trauma. I didn’t want to tell Andy because his birthday is today, and I knew that for the rest of his life, the day before his birthday was the day his mom told him the bad news. I didn’t want that, but I also couldn’t pretend that everything was ok, or crazier yet, wait until after his birthday for the results. I needed to know too, because if the news was going to be bad, I wanted to make sure I spent his birthday with him, because who knows if it will be the last time.

Oh right, I didn’t tell you want it says. Here’s the gist: pufferfish is now 12x12cm. A bit larger than a grapefruit and bigger than it’s ever been. The tumor on the interior has also grown. The tumor on the outside has shrunk. The cyst appears to be blocking a urether for one of my kidneys, and my bladder lining is thickened which is indicative of disease. There are also two brand new spots on my lungs, which appear be metastatic. Like I said no bueno. Three months of Tamoxifen may or may not have worked because the cancer is still there and starting to spread out in the neighborhood…did the Tamoxifen slow it down? Or did it do nothing? We’ll never know.

Naturally there was a lot of crying yesterday. I don’t see the Dr. until Monday, and I know that I am going to hear things I’d rather not, but it is what it is. I am no idiot, I know this is not positive in any way. It broke my heart to tell Andy, because that’s my only real regret, that it isn’t likely now that I will be here for the important moments in his future. I don’t know if I will ever see him graduate from college or get married (or not) or have grandbabies (or not.) I am scared for him. Like every mother I guess. That’s what made me cry so much. In addition to crying, I was able to acquire a more potent herbal medicine and that in combination with a few oxy turned my frown upside down, or rather, gave me shiny eyes and made me feel all floaty, and numb for a few hours. A very welcome numbness.

There are plusses I guess, I mean it probably means I’ll get to stop taking the tamoxifen, which seems to have done nothing but make me hot, pimply and nauseous for the last three months. And made my boobs swell, which is not a plus for me, simply an annoyance. It looks increasingly likely that I will get out of having to pay back those student loans. And that if I am going to Ireland, I’d better get on it.

Now you know. I’m really very tired, and also very medicated but I wanted this done so I don’t have to answer any questions right now. As I told Andy, whatever happens is going to be okay, because it’s what has to happen. There’s a fucking lesson here somewhere, or maybe this is just getting the crap out of the way so that in my next life I can assume the role of queen of the universe without any setbacks. Or be an alpaca. There’s a strange sense of peace in all of this – the anxiety of not knowing gone for now. At least I have a ton of people in my life who love and care for me, and in the end, isn’t that what matters.

So I’ll leave you with this…hug your people in your life. Hug them a lot. Hug your friends, and laugh.

And

I learned that courage was not the absence of fear, but the triumph over it. The brave man is not he who does not feel afraid, but he who conquers that fear.

Nelson Mandela


Sunday, Lazy Sunday

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…

http://www.tricycle.com/blog/accepting-unacceptable

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The Most Wonderful Day of the Year

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.

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