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Posts tagged “endometrial cancer

The War on Christmas Road Trip (with PICTURES!)

Wow, I realized that this last month I have sucked at actually completing a blog post and then posting it. Again, I’ve been writing them, or perhaps I should say, I start writing them, get in the flow, getting my words on, and then I start to feel nauseated and have to get the medical equipment and address it. Then, as those of you who are familiar with the medication are well aware, one of three things happen:

  1. I continue writing but by the time I get to the end, I’ve rambled on for seven pages and feel that I need to split it up into sensible chunks before I can post it. (rare)
  2. I say, gee, I just need a little nap now, and I’ll finish it in in a hour. And then two days later, I have to recover said document and save it because I never titled it, and then the computer froze. It’s still not done. (happens pretty regularly)
  3. I see something shiny or flashing on the internet, or decide I need to make some Christmas doo-dad, and then fall down a fuzzy rabbit hole in which I learn that baby reindeer start growing antlers almost immediately after being born. Oh wait, I haven’t watched https://reindeercam.com/ today. (and off I go to watch reindeer – happens all the time) (I just went to the interwebs to get the URL for reindeer cam and found out I have been eating pancakes all wrong, you should make a hole in the middle of the stack and pour syrup in there. Wow. Yes, I’m medicated)

And as you can see, the likelihood that I ever finish what I was doing becomes very small, and I promise to do it tomorrow, just like I do with letters, bills, unanswered text messages and laundry. But not today my faithful readers, I will complete this. I have sworn not to do anymore origami Christmas wreaths for my Christmas card until I write this entry and post it with the photo collages I spent hours creating this morning. (do you want an origami Christmas wreath ornament, or a Christmas card? Because I am so on that this year – send me your address). That is not to say that I have not completed some things. The house is well decorated for Christmas, although not quite finished. Fear not, the pictures of the house where Christmas threw up will eventually make their way to the blog and social media. As will the entry about what happened at the Dr. on Monday in all its gross and graphic detail, but I am here with a purpose today. So with no further delay.

Well the plan was to leave at 3am. Which was actually 5am. I cannot sleep in the car no matter how medicated I am, and no matter how tired. So Andy drove first for a while, and then I drove through the visual wasteland of Ohio and the flatness of Indiana. Andy took over and drove the rest of the way when we got to Illinois. I let him drive in cities because he thinks he’s better at it than me. It’s one of those battles I don’t care to fight. We got to the hotel earlier for check in because I forgot the time change, so we checked in at 2ish, and I finally got to nap. We ordered delicious Thai food, watched criminal minds and were asleep by 9. The hotel was very very nice, amazing beds, and pillows and quiet and right next to Lake Michigan. I would be amiss in not noting that while we were driving, I saw two hawks. I may or may not have talked about hawks and what they mean to me, but I was not pleased to see them because they always are a harbinger of change for me, and it’s never initially good. Saw a hawk, got laid off, saw a hawk, find out my cancer is back, see a hawk, overdraw my account. There’s a pattern. I know change is always ultimately good, but I still hate to see them, and this time, one of those motherfuckers flew straight at the windshield like that damn pigeon did on our 2013 Mother’s Day road trip to the beach. Except it didn’t actually hit the windshield. Anyway, I was on alert. I know that is sounds superstitious, and I typically don’t get all wound up by those things, but hawks freak me out. I can’t really explain it.

Day two started with Andy deciding to let me know he was going out to wander the city at 5am. Have fun honey. Bring me breakfast. I’m still sleeping. Off he went, and I slept and slept and then he came back by nine-ish with some lukewarm cocoa. And no breakfast, so I ate leftover curry. Then I decided to go for a swim in the hotel pool. It was a lap pool with no children in it so it was heavenly. I actually swam at least ten laps and felt amazing. I knew I would pay for this later, but hell, that’s what the medication is for. Then I even enjoyed the sauna. Since we were planning to go to the aquarium, I woke the sleeping Andy and we headed to the see the fishes. Curiously, Chicago’s aquarium and museum have odd admission prices. Like the GA admission to the aquarium is only $8, but if you want to see the sharks, and the stingrays, and the penguins and something else, it goes up to $30.95. Having seen sharks, penguins and rays, we elected to get the $8 tickets, which was the wise choice, because the penguin exhibit was under construction, the rays were closed for the winter and well, I’ve see sharks. It was a cute little aquarium without all the bells and whistles of the special features and had many penny-flattening machines. The Amazon exhibit was exceptionally humid and it started to make me feel a little sick so I was sitting down a lot during a visit. I was only able to take pictures in the very well lit places so I think I took three. Then I ordered Andy about to take more since his phone camera doesn’t suck the way mine does. We saw monkey and frogs and birds, as well as fish. I must say my favorite were all the big fish that had funny fish faces, the lumpfish, and the giant snapping turtle. And I gave every pufferfish I saw the finger and told them I hate their fucking presence everywhere.

We headed back to the hotel after buying expensive souvenirs, magnets and the photo package of the photo they take of you when you enter the aquarium. It was time to get ready for The Lawrence Arms First Annual War on Christmas show, and I needed a nap and a shower. This is where the not so good changes from the hawk comes in, and I am about to get graphic, so if that bugs you, STOP HERE. You can resume at the word RESUME. Anyway, I had to pee before I took my shower, and as you may or may not know, the pufferfish that lives inside me has been growing back to it’s original size after the last draining. It really started to cause issues the last week before leaving and all I wanted to do was have my trip to Chicago and I swore I would call the Dr. when we got back. Especially since I did not want to end up in the ER with tubes. Wednesday night, I was having some issues with being able to pee, and was worried, but that worry was gone by Thursday evening. Not only could I pee as I can when the cyst was drained, there were waves of fluid leaving my body. I was like, hell I didn’t drink that much water. When it finally stopped, I went to flush and realized is was a weird bloody mucus fluid, just like they drain out of my cyst, but then (GETTING EVEN GROSSER HERE) I also have had the gift of hemorrhoids since I was pregnant with Andy, and they occasionally burst, so I thought maybe that was it too. Whatever, I had a show to go to. I wasn’t saying anything to Andy, and was just gonna hope it was a fluke. I padded up just in case, and off we went. Whatever it was, could wait until after the show, unless I began hemorrhaging, and then we’d have to reassess the rate of blood loss to see if it could wait until after Off With Their Heads’ set. You may RESUME HERE.

So we got in the car and headed to the Double Door. We found it no problem. We should have taken Uber or public transportation, but then we FINALLY found a parking space just an ½ block away. Of course we started walking in the wrong direction and then realized that the one minute walk had turned into a ten minute walk, and I turned to my trusty GPS to get there on foot. The will call line was literally down the block. And we had to wait. I was beginning to get nervous because it was close to the time of OWTH set and I was like, we did not just drive 10 hours to miss this. We got in at the nick of time, just before they took the stage. The first person I saw was Tommy at the OWTH merch table and after an exchange of hugs and such, he told me to stand behind the table for the set, because he was going down front, and I would have a great view from where I was. And I did. And I did the best ever job of selling nothing for OWTH for their entire set. Then Tommy came back and took over, and introduced me to his friend Sarah who then because the merch girl while Tommy socialized. And I must say she did an excellent job, particularly with the complicated notebook sales recording system.

OWTH were great, it was very festive set, and as always, amazing. During the break, Ranae suddenly appeared and we too exchanged hugs and stuff and snuck away downstairs to talk during part of the Lawrence Arms set. We decided that Brendan Kelly looks like a golden retriever with his bandana around his neck and you just want to scratch him under his chin. I drank cranberry juice straight, as I am still protecting the kidney from any more tubes, and asked Ranae what hospital I should go to if I needed one. The rest of the time, I pretended to be perfectly fine. Ranae and I had a great time chatting, and hanging out, and of course I got to see Ryan, Nice Jon, Robbie and Ryan Fisher too and get hugs. I can’t believe I used to not be a hugger. They were going to go across the street after the show, and as much as I wanted to go too, I was just wiped out and more than a little nervous about the whole blood thing. And my body has a way of just shutting down when it has had enough. I get cramps in my legs, a pain in my lower abdomen, and cramps in my sides. It’s like it just says stop. And it was saying stop. So I had Andy take me home – I told him to go back and hang if he wanted to, but he worries and stayed with me. I had a medicinal mixture when I went back to the hotel and passed into a coma. At least I didn’t see anymore blood.

No more blood in the morning. I went for another swim/sauna deal, while Andy when and got breakfast – yummo. Challah bread french toast and home-fries with ham, swiss, and mushrooms. He ate many plates of eggs and potatoes with chorizo and cheese. I then took a nap and we watched Christmas specials like Rudolph’s Shiny New Year and The Year Without A Santa Claus before we got ready to go to the zoo. Chicago’s Lincoln Park Zoo is free, and has Zoo Lights. Again, my camera pictures suck so what you’ll see here is my shitty pictures. It was beautiful. And and awesome zoo with no major hills. It has tigers. And lions. They gave out cool 3d glasses that turned the lights into little elves’ heads. I wished I was medicated. Because not only were the glasses cool, so were the lights on their own. We had a great walk and the lights were amazing. Even Santa was there. Again, an ridiculous amount of money was spent of souvenirs. And we headed to the Big Bus Tour Holiday Express which is a nighttime tour of Chicago’s Christmas-y attractions. We started at the Chicago Hershey’s Chocolate World, which is not even close to the well-loved Hershey attraction. We waited and waited for the bus, as it was really late, and Andy was being a cranky baby because he ate way too much food and had a belly ache and was being a buzz-kill Finally the bus came and the bus driver was like, no you have to go get a paper ticket before you can get on, and I was like for real? We just waited for you for 40 minutes (they are supposed to be on a 10-20 minute cycle) and now you want me to walk to another stop and wait for you there? Do you see this miserable 20 something with me? Do you think I want to tell him he has to walk somewhere? So she said stay on the bus, and I’ll take you to the scanner stop. Yay! A small win. And I’m still not bleeding. Maybe things are fine.

We ride up in the top part of the bus, and enjoy the lights and what not, and decide to check out the Christkindlmart which had some beautiful things, but you could not get close to them because PEOPLE. It was a mob scene. I am not a big fan of people or crowds to begin with and this place was insane. Any food stand had a line 100 people deep. You could barely walk. Andy wanted hot apple cider and got in line for it. I managed to walk the entire market, even pausing to look at a few things, and by the time I got back to the hot apple cider stand, Andy was just being served. We took a sip or two of cider and headed back to catch the bus. We rode it to the rest of the stops, and then returned to Chocolate World, got our free hot chocolates, bought some cookies and headed back to the hotel. Again, my body was letting me know it had enough. And now the blood was back. I ate a cookie, drank a ton of water and went to bed. I wasn’t bleeding enough for it to be an emergency, but enough to be annoying.

On Saturday, I tried to get together with Sarah and Christy for breakfast or something but Sarah had already left to the airport and I wasn’t feeling very good, so we just packed up our shit (or most of it, forgetting my toothpaste and brush, all the leftover food, beers, and most importantly, the medication in the safe, at the hotel) We were going to go to the museum. Which like the aquarium has a GA price and then all the really cool exhibits are extra. First we were going to try to hit the Christkindlmart again, but when we drove by it was already a mob scene and NOT EVEN OPEN yet. Scratch that. Onto the museum. By this time, we decided we would just get out and take pictures of the cool Chinese zodiac sculptures and then get a Chicago hot dog, take a picture of outside of the museum and head home because I don’t feel my best, and well, blood. And that’s what we did. We also planned to stop to see some of Andy’s fellow Milts, Christina and Eric and their little guy Zane outside of Indianapolis. This is when I discovered that Jack in the Box exists in Indiana. Next to seeing OWTH and hanging out with Ranae, this was the best part of the trip. I was able to get and devour the unidentifiable flavors of the Jack in the Box tacos and egg rolls, bringing back California memories of looking for some place to get food after being out most of the night and heading home. Still tastes the same.

We stopped at Christina’s and were going to stay a couple of hours, but that’s when I really started to bleed heavily, so since I didn’t have enough supplies and I was afraid to sit down anywhere, we had to leave early. Andy is such a trooper and ran in Target to get pads for me; I am thinking maybe we should go to an ER, but really, I just want to get home, and if we have to drive straight through to Hershey to the ER, then that is what we’ll do. I tell Andy we need to stop at the first rest area because I need to change clothes and when we do, it’s virtually impossible to discreetly make it to the restroom to change when you’re drenched in blood. But I do, and things stay heavy for a while, and then slowly taper off. Andy and I switched driving around 11 and I drove through Ohio and into PA. When we got to PA, I started getting really tired, and would stop every 50 miles because I couldn’t keep my eyes open, but I also wanted to get home ASAP so I can decided what I need to do next. As I mentioned, I can’t sleep in the car, no matter how tired I am, so every time I stop, I end up just sitting there with my eyes wide open. Finally I woke up and Andy and had him drive the final 150 miles home. We got home around five, and the bleeding seemed to have stopped. I slept the sleep of the dead for at least 5 hours.

I’m gonna end this here, because it’s pretty long, and I can pick up with the call to the hospital when I tell the tale of the Dr. visit. No matter how much blood I lost, it was entirely worth it to have had this adventure. I can’t even put into words what it means to be able to do this stuff with Andy and make memories of good times for us. It was a fabulous time, and I would do it all over, even with the bloodshed, again because it was so fun. With that said, and it being Christmas time, do fun stuff with the people you love – buying shit doesn’t mean nearly as much as having adventures. Andy and I never really had “vacations” when he was growing up, and I regret that now – not that we didn’t go on day trips and stuff – but I wish we had taken more vacations, had more adventures. So take my advice and have as many adventures as you can. And now that I am done this entry, I can resume writing a whimsical holiday poem as is my tradition. Enjoy your evenings, lovelies, and don’t forget I still didn’t get a real puppy yet, or a miniature pony, so please let Santa know. I do have my other puppy sitting right here though, but he doesn’t like to go on walks. And I am always available for cookie tasting. Now, be off with ye…

And excuse grammar and such errors. I really don’t feel well today and I am staying medicated, so I can’t properly proof-read today.

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Free At Last!! (At Least From The Horrors of the Tubes, Anyway)

I actually got ready early this morning, because we had several things to do be we left for my appointment at Hershey – which included going to vote with Andy and having a discussion about voter suppression, since once again, illegally, the polling place had a sign that said new voters had to show ID. I don’t know whether it’s blatant disregard that that no law was ever passed, or just ignorance developed from watching too much Fox News. Whatever. Not to mention that the polling place door is always surrounded by people campaigning for local candidates, making it somewhat intimidating to enter without being assaulted. But enter we did, and refused all the little cards the lurkers tried to force upon us to help up select our candidates. Really, if you don’t know who you are voting for and why when you get to the polls, you shouldn’t be voting at all, because you are clearly uninformed. I hate the way small town voting always seems shady, but our votes were cast and we received our stickers, which is my favorite part of voting.

After voting, we then had to hit the pharmacy because I was not going anywhere near that hospital today without being armed with a full prescription of pain meds. I wish I had had something for anxiety, because while the pain of the last tube procedure was just a memory for my brain, my body was fully remembering the trauma of the last visit, and on high stress alert. Not to mention that I couldn’t eat or drink anything for several hours before this stabbing, and I was nauseated by the Tamoxifen and shaky from not eating or drinking. My brain kept trying to deny that this time would be as painful as last, but my body was having none of that. Being sedated last time when I was leaving the Vascular Radiology department, I could only remember it was down the hall from Interventional Radiology, and wandered around lost in the bowels of the hospital trying to find it. I did find my friend Joanne, who works at PSHMC, and we then wandered together until I found it. I checked in and went to the waiting cell. As is typical at PSHMC, Fox News was on. I was doing okay until they started interviewing Donald Trump, and he began spewing outright lies, and no one even challenged him. At that point, I went and stood in the hall, because Tamoxifen raises my blood pressure and that asshole was making it worse. Not to mention all the crazy supporters in the waiting area who find him appealing as a candidate. And lest I forget, the man who spent his time reading his magazines aloud, then also audibly commenting on the articles he just read. I could feel my blood pressure soaring.

Finally I was beckoned to the dungeon, er, staging area. IV insertion did not go smoothly, and my very sweet nurse called for a vein whisperer after her first two attempts did not go as planned. My left hand is now going to be a large bruise. The second nurse got the IV started in my right hand after a few harrowing minutes when it looked like that vein was going to blow too. Settled onto my bed, I actually had a pillow this time instead of a fold-up blanket like last time. I tried to lie down, but I wanted to puke, so I asked the nurse to help me sit up so I wasn’t choking. She offered me Zofran, I wanted my herbal medication, and declined, and said I would deal with it when I got home. She said, oh do you drink ginger ale and I giggled and said, yes, but I also smoke marijuana. She nodded her approval. The Dr. then came out and told me that they had discussed my tube at their morning meeting and agreed that if they ran dye through my tube and it made it to my bladder, they would pull that sucker out. I agreed completely – then found out that since that was the plan, there’s be no sedation, no pain meds and no need for the IV so carefully stuck into my hand. However they left it in, and wheeled me into the procedure room, where in 15 minutes, my 13 weeks of torment were over. It was almost painless, but not really. I couldn’t wait to get a drink and some oxy to ward off any impending pain. I was wheeled back to my waiting space and released. Now to find Andy and my mango smoothie.

Andy and I hit the road after finding each other, and headed home. I drank my smoothie and ate my pills and was still cranky because I needed to eat. I wanted wings, but the wing place didn’t have any interesting flavors, so I settled for a jr. bacon cheeseburger, and some nuggets from Wendy’s. After my angry, hungry beast was fed, things were much better. We got home without any serious pain like last time. My little friend Erin was there to great me when I got home, and after a couple minutes of chatting with her, I headed to the tower, more pills, my medicine pipe, some advil and water. Having adequately medicated, I tried to sleep. Then the pain came. I guess I didn’t take my meds at the right time to prevent the last dose from wearing off completely, and just like last time, I couldn’t move my right side for without screeching pain with every movement. It’s since toned down a little, but that’s the main reason I am blogging tonight, because I need to get another dose in before I go to bed, so that I don’t wake up crying. My kidney spasms every now and then like it’s pushing small pieces of glass through it, and that my friends, is horrific. It lasts less than a minute, but it jolts me awake. Hopefully by tomorrow morning it will be tolerable.

The pain however was what got me thinking about blogging tonight was, because I don’t know if this happens for other people, but it does for me, when I am in pain I tend to hum, and then I hear songs in my head that are relevant to my situation. For instance, the song of the evening that is replaying in my head is Off With Their Heads’ Trying to Breathe. It’s my way of self-soothing I suppose. But I seem to have certain soundtracks to my life – like last month, I often heard one of U2’s earlier songs, October, over and over in my head. November is the month of the Jesus and Mary Chain because Joey’s birthday and the day he died are both this month, and the JMC is what reminds me of our friendship. And when the depression hits, I often turn to the Smiths and Elliott Smith to highlight my misery. When I was first diagnosed with cancer and I had to make the 4:30am drive back and forth to Hershey, I listened to OWTH’s In Desolation, to and from, every day…it got me through those six weeks and far beyond. OWTH is still one of my go-to bands for catharsis, and that’s the reason I try to see them as often as I can because there’s a sense of belonging among that crowd that I am not alone in my pain, fear, and frustration. It’s healing and cleansing. In fact, if you were to ask me about specific times in my life, there would be an album or a band that I would identify it with. R.E.M got me through being dumped during my pregnancy. I made mix CDs (and now playlists) of songs for seasons – there were summer songs, and loneliness songs, and dark brooding goth mixes with Black Tape for A Blue Girl. Some people enjoy music – my music gets me through the hard times, helping me put to words what I am feeling inside, and scream it out loud on winding back roads, helping me heal. There’s even driving music, which I have to be careful with because it seems to enhance my leadfoot. Then there were the new bands I discovered and would listen to when I first got to California and had to take the 2.5 bus ride to and from work every day – Husker Du, the Replacements and the Hoodoo Gurus to name a few. And Echo and The Bunnymen’s Songs to Learn and Sing. Andy’s first show was the very first Lollapalooza when I was 8 months pregnant. Most of my friends are clueless about the bands I listen to and love, but without my music, I’d be lost. It’s not just music, it’s my way to cope. Especially while I have been dealing with this C-monster that has me in its clutches. When I got the last prognosis, I spent hours driving and crying and singing my throat raw before I could pull it together to come home. I listen to classical when I need to focus; I listen to weird rhythmic pieces by Gabrielle Roth when I need to stretch, and I had playlists for the gym when I still had the strength to go. There was music for strength training and music for the elipti-hell machine. And there are songs that I will listen to on repeat until every ounce of pain has been expunged. And while I find peace in the bands I discover and love, there’s also music that makes my ears bleed – and gets under my skin like a festering splinter that I can’t wait to be rid of. Like when we went on the dinner cruise in DC, and the music they played on the observation deck made me want to leap into the Potomac or shoot out the speakers, or both – music can indeed make me miserable. Or it can make me laugh, like the song Bunnies by Pansy Division. (Go ahead and download that one) And for those who received them as holiday gifts – there are my impressive holiday songs collection, which have had some gems on them. It’s not just music, it’s part of who I am.

Music was the reason I was willing to put off chemo for two months so I could go to shows and festivals and see the bands I love. And while I made it the shows that mattered most to me, we all know how difficult the kidneys and bladder made following through on a lot of that was. In fact, going to shows made me fight a little harder to stay healthy so I could go. And it gives me a connection with Andy, that we enjoy a lot of the same music gives us something we can do together. In fact, my Christmas present is going to Chicago for the War On Christmas shows in December. Part of my “things I still need to do list” includes seeing bands I’ve always wanted to see live, which is a pretty short list these days, but there are still a few I haven’t seen.

Well now that I spilled all of that out there, it’s time for another round of pills. I’m still having pain, but it’s getting better – I will probably need my dressing changed in the morning – the doctor said that my kidney will seal itself, but there may be some discharge for a few days. I am allowed to swim and take baths again – they said 2 days, but I’ll wait a little longer, like when the hole is actually closed, and I don’t need a bandage on my back. It’s really the tape tugging at my skin that causes the most pain – there are scars around my back where the tape tore away my skin just like it did on my thigh. And it itches. But it’s almost completely over and I am so thrilled that I can’t even stand it. I rolled around on the bed just for fun, because nothing was tugging and pulling at my skin and kidney for the first time in over two months. I could literally feel the stress slide off after I got in the car to come home. I can deal with cancer, and I know at some point these things might have to be a part of my life n the months to come, but they don’t need to be here now. I just want to be able to do things and go places now while I can, without these encumbrances. Not that I minded taking the punk rock stroller to the shows, but I’d much rather be free of the attachments. No, that’s a lie, I did mind taking it, but a girl’s gotta do what a girl’s gotta do.

So now that my pain pills are slowly making their way into my bloodstream, I am ready to head to bed so that I can get up and get things done tomorrow, at least some laundry and maybe making dinner. We’ve been eating a lot of fast food, food other people have so kindly made for us, and frozen food. I haven’t had the energy to cook, but I’m hungry for jerk chicken and mashed potatoes and corn, and I know Andy would be grateful for his mother’s cooking again. The ladies arrive from CA here in Shenandoah on Friday, and Saturday morning we are going to Shady Maple for breakfast (and for the gift shop so I can get a new toy). I am so excited to see them all and spend time with them. And I am very thrilled to see all my other friend at the benefit on Saturday, and to score some of the good food that will be there, especially the stuff Lisa’s making, because that woman can cook. Best breaded chicken ever. My only hope is that my dad doesn’t over do the wine and drag up every less that optimal decision I ever made in my life. Presently, he’s blaming my circumstances on moving to FL with my much older alcoholic and drug addicted boyfriend when I was 17. That’s a long time and a lot of therapy ago. But that’s my dad. It’s still going to be a good time.

Before I forget, I did get my panda suit. It was very hot. I sat on the porch for over an hour waving at cars, but only 4 people total ever waved back. I scared Andy, Eric and two other people walking by. People showed the panda no love. If I saw a giant panda just sitting and waving on a porch, I would have stopped the car for pictures. Then I let Andy borrow the costume for a show he was going to. The panda body no longer exists any more because he was far too tall for it, and it showed. However, panda’s head is just fine, so I’ll just toss on my new security blanket, my OWTH hoodie, and sit on the porch as punk rock panda, and see if that makes a difference. Now it’s time for bed, and more water because we have to keep the kidney in good shape. Sweetest of dreams, I’ll probably be back after everyone returns to the West coast with pictures and stories to tell. Enjoy these last few warm days. And remember to give lots of hugs and tell people you love them every chance you get. You can’t do either enough. And sorry for the rambling, it’s the medication, I swear.


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.


Return to Mania

I once asked to be tested to see if I was bipolar. Alas, I am not. I know it’s not a really cool thing to be, but I was just hoping for a rational explanation for my occasional bursts of mania. Like today. However, I believe that it must be the result of getting sufficient sleep and upping my effexor. I’ve been super weepy the last few weeks, probably because I wasn’t sleeping, and under a lot of physical duress, but the last three nights have been heavenly.

With that little intro, let’s dive right in to the Dr. appt on Monday. The new course of treatment is to alternate Tamoxifen with Megase. We all know how I feel about Tamoxifen, (and why I am procrastinating in taking it today) and Megase promises to be a joy too. So I am two weeks on Tamoxifen, then two weeks on Megase and then switch back. Both are going to fuck with my endocrine system, and Megase has the added bonus of weight gain, which is just what I need. I suppose it’s a decent trade off for a healthy holiday season. I got the vibe from Dr. K that he recommended that I do this treatment first before we consider infusion because it may be the last healthy Christmas I have, so why fuck it up. I’m okay with that. It was a good appointment, and I made it clear that I would prefer in the future to have my cyst drained first before we start shoving tubes into my bladder and kidney. He said his job is to keep my kidney healthy – I said I get that, but please, lets avoid the catheter forever. This visit’s minion med student was cute, she kept apologizing for the fact that cancer and the catheter/nephrostemy killed my plans for Riot Fest and The Fest, and made me miss the Bouncing Souls and Leftover Crack. I told her she was not responsible, but she kept apologizing anyway. Even when I almost ripped her head off when she said “so I understand you refused chemo before, are you willing to consider it now?” and I had to again explain I never refused anything, I simply asked for a delay if it wasn’t going to exacerbate things. Poor child. I was still sleep deprived at the time so I think she thought I was about to tear into her throat and rip out her artery. Anyway, I made her laugh and then she stopped being scared. I go back in January at which time we look at the next step. As for the pufferfish, I know it’s busy attempting to get back to its monster size, I can feel twinges and jabs, but I still have complete use of my bladder, so I’m down with sucking up the pain. And I want this tube out of my back in six days, so I will do what it takes. There were no scans this time, because they will do a scan when they yank the tube – unfortunately they aren’t like the cyst draining radiologists who show me the pictures live and all the goop they drained out. Dr. K found my excitement with seeing all that shit hysterical.

For those of you who have never dealt with chronic pain, you don’t really get what constant pain does to you physically and mentally. It keeps you in a heightened state of stress. Your body never really relaxes. My jaw is constantly clenched. Medicating it only does so much. You find a good position and you don’t want to move so you stay as still as possible. You do a lot of sucking in your breath and hissing. My situation is accented by the hole in my back that is constantly trying to close itself even though the tube is preventing it. And let’s not forget the promise of painful terror that’s on my mind when I think about them trying to remove it. Because they are going to lie to me and say they will give me a local to block the pain. And I will half heartedly believe it until they make me scream and leap of the table. It’s a game we play, the radiologists and I. Let’s hope it’s the last time.

I’m in a pretty good mood. I am super excited that my California friends will be arriving in a little more than a week. I have missed them every day I have been gone. It’s going to be quite the reunion. I’m keeping my drinking to a minimum though, because I want to keep these kidneys healthy and happy so it’s gonna be all about the water for the next two months. I see palliative care today at 1:30. I will probably not be the happiest I could be when I get back, but it’s a gorgeous rainy day, and I am going to enjoy the drive because I love how the rain makes the tree bark black against the last of the fall leaves. And fog, there will be fog. It also means idiot drivers, but I don’t think they take my blood pressure today so there should be no freak outs in the Dr’s office. When I went in on Monday, my initial blood pressure was 177/100. I told them to take it later and it was 138/80, which it was clear that it was high because of idiots on the road. After that, I am going to hit the nice wal-mart in Palmyra today because I need a few things. And I also want to stop and score some whoopie pies for Ranae because apparently someone’s band found the ones she had in the freezer. I have to get some for the California girls too, so they can take them back with them. By the way, according to the scale at the Dr. office, I lost 17 lbs since last month – it was probably a lot more but my two week binge of drinking a half-gallon of chocolate milk a day put some back on. Still that’s a lot of weight – just another 20lb and I’ll weigh what I did when Andy was born. Then only another hundred until I am back at pre-pregnancy weight. I’ve decided it’s time to lose the skinny clothes, because at this point, the likelihood of ever squishing back into my plaid pants is slim. I even went as far as getting garbage bags to put them in. But then that burst of housecleaning energy went out and I decided to blog.

Sorry this is so mundane today, but I’ll take it. I’d like some normal days. I’d like some time when I don’t feel any pressure. And once this tube is out of my fucking back I think I might even schedule a weekend away so I can go swim again in an indoor pool. You have no idea how the knowledge that I may never swim again, or take a bath or enjoy a hot tub was weighing on my mind. It’s one thing when cancer kills your goals and dreams by stealing your time, but it’s a whole other ballgame when it steals the little things too – like walking and swimming. This disease is such a huge mind fuck…the psychological destruction is really overwhelming. When you start to lose options in your life, the things you have left become all that much more important.

One thing I did want to rant about today is more about Andy than me. People tell Andy to be strong. That he has to be strong. He doesn’t. He has to be Andy. I will be strong for me. Andy can be strong for himself if he wants to be, or not. It hurts me that people have made him feel like this is his battle too – he is strong, but he’s also human, and he feels fear and uncertainty like the rest of us. Those are valid emotions and he needs to know it’s okay to have them, and to sometimes be okay with being terrified. Telling either one of us to be strong is bullshit. Both of us need to be able to be who we need to be to get through this shit. Everyone has that right. You get out of bed in the morning and you do what it takes to get through the day. Some days are good and some are bad. A week ago, I didn’t want to even get out of bed. But I said “just get through today.” until I could get out of bed without having to be my own cheerleader. It’s not about strength, it’s about will, and being able to stay in the present moment. I do what I have to. When I decided I no longer need to do it, I won’t. As I have said before, it breaks my heart that my kid isn’t able to enjoy being a 20 something because I am sick. I know the weight of having a parent with cancer, as I lost my mom at 27. I wish I could save him from all of this.

That said it seems to be time for me to hit the shower and head out to Hershey. Maybe I will post again later after the visit or maybe I will be too upset to do it, who knows? But I suppose I need to take that stupid Tamoxifen too. Have a good day monkeys, and give someone you love a hug. Or someone you like. It is #hugitouthumpday after all. Peace.


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.


Falling Down a Rabbit Hole

It’s Monday. I’ve lost a full week. I’m sitting up and made my own bagel for breakfast after enjoying several trips to the bathroom to pee, which since Dana is gone, is a celebration each and every time. I’m working on scheduling doctor appointments and getting up the energy to leap (that’s a fucking exaggeration – I am not leaping anywhere anytime soon,) I am happy just to move forward without falling or gagging or wretching. I puked more in the last week that I did throughout both times I did chemo. Which is a special time when you have a catheter and a nephrostemy, because you may not know, all that shits connected in bizarre ways, and that nephrostemy tube in my back moves in and out as my kidney moves, so when your stomach is twisted up and hurling all that ice water back you just drank back into the sink, it’s also trying to simultaneously push out the catheter and the nephrostemy tube, which being sewn into your kidney and back is being torn out unless you put your hand on it to hold it still. This feat, called contortionism, requires that you twist your right arm completely around in your socket to put your palm on the bandage. This leaves your left arm available for all of the following: keeping you from slamming your face into the sink or holding your stomach, or covering your mouth if you are on your way to puke again all while making sure you don’t step on Dana or get it caught on something. Fucking phenomenal. Then you can try to brush your teeth and hope it doesn’t spawn a new round of hurling. This is followed by return to bed, where you freeze, sweat, freeze and then not be able to figure out of if you’re freezing or on fire. Only ginger beer brings a smidgen of relief. I didn’t even want to sit up long enough to medicate with my fine herbal medication.

So here it is Monday. I’ll eventually write more. For now, I’m sorry if I missed your birthday, or ignored your text, or message or didn’t respond with appropriate enthusiasm to something you said or did, I’m sorry. I went to see my brother and his wife and spend the whole time puking in their bathroom and spreading disease. Today is the first time I even opened the laptop in five days. I’ve spent more of the last week crying and wishing I could just die than I have the last 10 years. And now I’m about to make an appointment with palliative care, the call I never even thought I’d be making.

That said, OWTH was fucking amazing, as they always are, as was spending time with the Erica, and Denise and every one else. Ryan, I hope I can get a bunny shirt on Friday at the D4 show. I’m going to stop now, because I realized I am purposefully avoiding making this phone call. And at some point, I’m gonna need to shower and get in the car and get some sun on my face. Be well. Love each other, and get all the hugs you can. Even if it spreads plague.


This GIrl, Her Pufferfish and a Kidney Walk Into An ER…

It’s hard to believe that it’s barely over a week since I saw the oncologist. Last Monday, I was pretty happy, normal person, albeit with a massive pufferfish exploding to new sizes in my pelvic cavity. And now my world is fucking upside down and I am angry, hurting, scared and lost. So I caution you now, this mostly fueled by the anger I have for this fucking disease and is going to be graphic, and will likely include overuse of the word “fuck,” but at this point, I don’t even fucking care. You might. I don’t. You’re not the one with the giant pee penis rammed into their vagina like a rolling pin, walking around with pee bags attached front and back because your body fucking betrayed you more than you thought it could. I am.

So yeah, there’s humor in here, but only because being fucking bitter makes me funnier. Let’s tell the story. We all know that the whore of a pufferfish is still growing in my pouch of Douglas. We all know I wanted just two more months of no treatment so I could have some fun before I got really sick again. I was dealing with the fact that the stupid c-monster wiggled around in there, sometimes blocking my bladder, sometimes causing me real pain, but things were working for the most part. I was dealing with the almost hourly trips the bathroom at night, the lack of sleep, the constant urge to pee at night. I could live with it, as annoying as it was. Until the ability to pass the pee stopped on Wednesday night. And I am going to get even more graphic here because what the fuck, I have to live it, so maybe this will help someone else who deals with something like it. On Wednesday night, the 12:30 trip to pee ended in a couple drops and about 40 minutes of cramping, cursing, writhing, crying, more cursing, wriggling, standing up and sitting down, and frustration. Sleep five minutes. Back to the bathroom, repeat. All fucking night. For those of you who have given birth to spawn vaginally, imagine that moment when you want to push and they tell you to wait, and there’s all that fucking pressure and you’re just like when can I push this monster out of my uterus??? Well that was what this feels like. I’d been dealing with a milder version of it for months, but at least then it ended in finally being able to pee. Not this time. The sun came up and I got ready for work. Usually I had no problems during the day, because the movement of being up and around would move the cyst away from whatever it was blocking, and I could be normal during the day. Not this time. All morning, nothing. And it is as uncomfortable as anything you could imagine. I google my symptoms and web md tells me I should probably go to the ER. We agree. And off I go.

Since I won’t see a Dr. anywhere but in Hershey, I make the hourish drive there. I’m doing great until I hit Hersheypark. Then my bladder, deciding it had had enough fun with me for the day, bursts like a fucking tsunami in the car without warning. And what do you do when you are pissing yourself at 60mph, and there’s nowhere to stop, and what would you do anyway, if you could, stand on the side of the road and drip? AND it’s raining. AND the get gas light just came on. I did what any normal person would do, I drove to the ER and parked the car and panicked. No blankets, no towels, not extra clothes, soaked in piss. In the rain. 200 feet from the ER. I can’t go get dry clothes at home because I would need to get gas and I can’t get gas because I’d have to get out of the car. I can’t just run over to K-Mart and get some dry things because I am soaked in pee. Finally, I try calling some friends to see if they can run to my house, get me some dry clothes and bring them to me. My friend Lori agrees to help me out and while I am waiting, I decide that I cannot sit in the car in this state for over an hour. I call the ER, and ask them if they could send someone out to get me with a wheelchair or something. They do. And I cover the driver seat with shop towels to try and soak up the mess.

The ER was awesome. They got me right to a room right away, and got me out of my pee-pee pants. I have to say that the ER staff was downright amazing. Now, my body has agreed to let me pee a bit from time to time. At first we’re just going to make sure there’s no infections or what not. I point out that I know it’s the bloody pufferfish’s fault. They do an ultrasound on my bladder and kidneys. My bladder is full. Even though I just successfully completed the attempt to urinate not two minutes before. This is not good. My kidneys look nice, but the right one is showing signs of distress, because the beast in my belly is putting a kink in the right ureter and urine cannot pass from the kidney to my bladder as efficiently. While all the poking and probing is happening, Lori, my saviour, arrived with dry clothes, and my bff Kelly came to visit and brought me a phone charger. You see there’s wireless in the ER, but no cell service. So I need to put my shit on blast on Facebook (which I’d probably do anyway) to try to get messages to the people I would usually text. And for that, I need my phone to be charged. It was like having two guardian angels in the room. All the while they were there, we’re kind of just waiting. I am getting scolded by the wonderful nurses for escaping the monitors they have on me and leaving my room. We set the bed alarm off trying to figure out how to make the back go up. We ring the nurse just to ask her if our pizza is here yet. We make their jobs fun.

Finally, the resident surgeon from urology comes in. We talk about how I was going to have a consult on Tuesday about a stent in the right ureter. I am still not sure how that is going to help the bladder issue, but I am not the medical professional here. He’s hot, not super hot, but definitely a cutie, and probably barely older than my son. Oh good, and now he has to examine me. Now, I know a lot of people say that they don’t care about how they look when they’re sick and the doctor is examining them, but I am not one of them. I am completely self conscious about being obese, with radiation scarring, the myriad of scars from laparoscopies, and my sad sad vagina. I don’t really want to look at my vagina myself, so I feel bad when others have to. And that’s sad, because the vagina and I had a lot of good times together, but that was over 20 years ago, and now, it’s just another body part to betray me. Cute Dr. Brian gives me some options – get a catheter and come back Tuesday for the stent, consider just getting a nephrostemy on the right kidney today, or next week, do nothing, or just get a catheter. I say we should just try the stent, and then see what happens. He goes off to consult the attending, I mentally try to remember his full name for my friend, Ashley, who needs a rich doctor husband.

In the meantime, Kelly and Lori have to leave…it’s becoming late and it doesn’t look like I am going anywhere. Nurse Kristen tells me they are just waiting on urology. Dr. Brian comes back and says, “Hey, I forgot one option, we could admit you and do the stent in the morning!” I like that option. I’m getting a catheter anyway because they will need it for surgery, and Dr. Brian initials my right belly with his purple sharpie so they don’t screw up and put the stent on the wrong side and he’s gone until the morning. Nurse Kristen brings in some helpers to do my catheter, a nice young lady, and another cute male nurse. Oh fuck yeah, bring on the vagina/body image shame round two. Kristen tried to put in the catheter, but it won’t go in, the male nurse is just hanging back and Kristen and the other female nurse go back and forth, trying to jam this thing inside and it’s not going. Finally, they ask the male nurse to do it. He manages to get it in the urethra on the first try, and I breathe a huge sigh of relief that that inhumane torture is over. Or is it? Then they start an IV. The first bag is fine, until the vein blows up and now we are on to the other arm. All this time my blood pressure is through the roof because I am in pain, terrified, and don’t want a hole in my kidney. I break down once with nurse Kristen, and once again when Dr. Brian comes back to check in about tomorrow’s surgery. Kristen puts the IV bag on a hook in the ceiling so I can no longer get out of the room. I am trapped until I am admitted. Five minutes later they come to take me to a room; then immediately cancel it, because they now can’t take me to that room. I remain in the ER.

I have to say that Kristen was awesome when I was crying and sobbing about how this is so unfair, that I have plans for the next two months and how this was not supposed to happen and then cracked up when I said that I didn’t even get any of the good side effects of cancer like losing weight. Not me, my appetite is just fine. Then she said that patients like me are the reason she is a nurse, and that she was grateful to me because sometimes she forgets why she does what she does, to be there to comfort people when they are scared. She said she wished all her patients were like me, and she just held my hand. I don’t often say things like this, because I’m not gonna lie, I have some unresolved shit with my dead mother, but in that moment, it felt like my mom was there trying to make me believe it was going to be OK, because my mom was a nurse too. I was so grateful to Kristen that night, and even more so when she tried to find me jello and could only come up with two vanilla ice cream cups which became that night’s dinner. (I also had a turkey sandwich, later).

Pause here for a breaking funny story:

Andy comes in after his shower, and I tell him that Urology won’t even see me until September 14th, which means I can’t go to Riot Fest or the Whoopie Pie Festival, because there’s no way I can be up and about with the giant pee hose stuck in me for a drive to Chicago, as I am only comfortable standing or lying down, he does what Andy does best – he offers this solution:

We could get a u haul and attach it to the car and throw you in it on your back, and punch some holes in the side so you could breathe back there or maybe get you an oxygen tank.”

How can a mother not be incredibly proud of such resourcefulness?

Back to the ER now. So the evening wears on – I am being admitted but who knows when? I am now forbidden to eat or drink after midnight as I will be having general anesthesia for the stent procedure. I suck down all the water I can before I become gremlin-like. They pull my IV off the ceiling and put it on an electric pump. I get a new IV in the opposite are because the other one is swollen like a bad molar. Around 2am, I am being moved to a new room. It’s all the way at the end of the hall of a new section of the ER that I have never been in before. It’s dark, and it looks like the holding cell for psych patients at our local ER. Not the psych hold thing again I hope. But in comes Nurse Dan. Again, a handsome young man who will probably take a look at my hideous nether regions. More anxiety. The way they have my IV inserted in my arm, every time I move I set off the alarm on the pump and Dan has to come running. He kindly asks me if there’s any possibility of being pregnant. I snort, and say nope, no uterus. He asks me my favorite question “when was your last period?” I proudly state 2011. When I answer my fifteenth interrogation of the night, I try to sleep. Only to be woken by some maniacal woman down the hall screaming at 5:45 am that it’s her health choices and she’ll make them and then screaming for Dan to get in there. Poor Dan.

Finally cute Dr. Brian and his attending and some other medical minions come to see me before surgery; I tell them that I thought it over, and if they cannot place the stent then do what they have to make my kidney well, and if that means nephrostemy, then that’s what it is. They are glad to hear this. And I am whisked off to surgery. When I wake up in recovery I demand jello, and discover they could not place the stent. Nephrostemy it is. That will come later. That one is an awesome “twilight” procedure, which means my ass will be awake. Oh fucking yay. Fortunately, that does mean I can eat jello. And drink water. No food, but at least there’s jello.

In between procedure one and two, I am taken to the second stage recovery from same day surgery. While I am there, the kindly nurse gives me some IV dilaudid/fentynal to help my pain. It brings me joy. Then two minions from gynecological oncology come by to see me, and tell me Dr. K is out of town, but they will see his associate this afternoon, and she will probably come over this afternoon. When they tell me who that associate is, from my drug fueled fog, I become lucid enough to tell them “don’t bring that bitch here, I have enough stress going on without her lack of bedside manner to make it worse.” The two minions stared at the sudden transformation from my happy cloudy self, to the alert demon before them now. I tell them she tried the put a psych hold on me the last time I saw her and I don’t want her near me in my present state. I will wait til Dr. K returns. I thank them for their time and they leave, and that is the last I hear from gynecological oncology during my stay.

Around 3pm, I head to radiology for the nephrostemy. They give me some meds to relax me, and some local anesthesia in my back. Neither eliminates the stress of what’s about to happen, the pain or the anxiety. I am lying face down on the table while they drill in my back to get to my kidney. After a few false starts, they hit the bonanza, simultaneously finding the only spot in my back that is not anesthetized Screaming commences as they try to get the pain under control; the pain subsides, but I am shaking so hard from the pain I can’t keep still. Somehow they manage to get the tube in and I am eventually returned to recovery. More pain meds follow.

Andy and Tom and my friend Ashley who left me to work for the Governor’s Office all come to visit me. I finally have a phone and a phone number and Erica and Paige call me to talk to me and it between my visitors and callers I feel pretty good and have not had any time to focus on the fact that in less than 24 hours, I have gone from happy-go-lucky cancer girl, to girl-with-a-tube-in-her-kidney-with-a-fucking-giant-cyst-that-is-causing-complications-forever. After everyone leaves, I nibble the snacks Andy and Tom brought and enjoy the flowers that Ashley graciously shared with me. I watch TV. I find that new pee bag became unplugged from its hose and soaked me and the bed. We wash, change and I get back into bed. More pain meds. Dr. R from urology comes by to say he’d like to remove the catheter as he doesn’t want me to have to go home with it. He says they will take it out at 1 am, and if all goes well, I’ll go home in the morning. I get some dinner, a delicious meatloaf and mashed potatoes and fresh green beans. No jello, but a delightful lemon sherbet. When 1 am rolls around, they finally remove the catheter from me. Liberation. I can finally get out of bed, and discover that my bag leaked again. I am not thrilled. Then I discover when the nurse’s aide pinned the bag to my gown the last time she changed it, she put the pin directly through the bag, and not where the pin can safely go. Now we need a new bag. We get things in order, I get to use the bathroom and actually tinkle on my own in one of those awesome “hats” and I try to get comfortable enough to sleep. I now have the IV in the back of my hand (location 3) it’s hard to find a position in which I am not kinking something up or cutting something off or being speared in the kidney by a hose. It’s a fucking circus.

Nancy, the nurse’s assistant or patient care aide I think is what she’s called, is a talker. I had her care for me back in December when I had the laparoscopy. One son is a genius, and is an aerospace engineer with no common sense, who now wants to be a lawyer, and her other son, well he’s just normal. Her husband had his arm torn off and reattached and when he’s grumpy, he makes her grumpy. She has a migraine but what can you do, you have to come for work. She cannot get over the beauty of the sunflowers from Ashley’s yard. She’s never seen anything like them. She’s loud and funny and talks non-stop, which isn’t helping with the sleep. I tell her I would like her to take the flowers when she leaves, and enjoy them, and she is overjoyed and begins to tell me how she is going to dry them and get the seeds so she can plant them in her garden next year. I finally fall asleep for an hour or so, and then the early rounds start – the urology minions first, then the radiology team. I am free to go, once I can get Andy to answer his phone. Andy also has to be here to learn how to clean my tube daily and to change the dressing – they offered to show me how to do it, but um, yeah, it’s on my BACK, and I am not an octopus with multiple arms nor am I an owl who can turn my head to see my back. I eat my breakfast and wait. I put the clothes on that Andy sent down with Lori. His picks were from the “these clothes are being thrown away” pile, so I put on the shorts with no elastic and decide to wear the shirt I came in with instead of the too small one Andy packed. Finally, sleepy head gets there and we learn wound care and off we go.

I get home, feel pretty good for having an hole in my back. I sleep most of the day away, until 11pm, when the no peeing thing starts all over again. Long story short, it was a horrible horrible night. I tell Andy I need to go to the ER, and I pack extra clothes and a seat cover in case of accidents and off we go. About ½ way there, my bladder lets go with no warning. Good call on the seat cover. I tell Andy to take the back way to Hershey because there’s a portapotty at one of the trail entrances on the state game lands. We get there and to my surprise, it’s been upgraded to a real national park bathroom. As gross as a portapotty but larger. I change and we resume our journey. Unfortunately I also have another bladder eruption as we are turning into the driveway for the ER. How can there be so much pee! Andy has to go get a wheelchair and bring me in that way again.

You would think the fun was almost over here wouldn’t you??? I would. I have to give an urine sample. I try to do it in the bathroom, and squeeze out a little. I go back to the exam room, and guess what? Bladder eruption, but this time I am on one of those pads, so it’s all good. While waiting for urology and the er docs to come by I discover that I can pee, but only if I am sitting on a fucking diaper on a flat chair, because it pushes the cyst back up into my body and lets the urethra do its thing. When I try to use the toilet, it rolls down like fucking boulder and shuts everything off. I share my discovery with the Dr. who says it sounds reasonable but not a long term solution so guess who’s getting another catheter. It is at this time I learn that the reason I had such discomfort with the last one was because they used a latex catheter and uh, yeah, I am fucking allergic to latex. Nurse Sara tries her best to gently insert this one, being herself a vagina owner, and knowing how brutally uncomfortable this is. She can’t get it in; Urology is called, and they will come do it. Two doctors arrive, and no matter how hard they are trying to be gentle, they don’t own a vagina, so they have no idea how ridiculously painful this whole process is. Finally it’s in, and my bladder starts to empty. Despite the number of times I managed to empty my bladder using the chair method, it’s still pretty full. They are going to do one more urine analysis and then I can go home. Andy has already left for work, and my beloved Paige and baby Kenny have agreed to come get me. They tell me I will have the catheter in for a week or so – then they will take it out and see if I can just intermittently catheterize myself on my own daily instead of having the giant pee snake invading my vagina. They will call me with an appointment. Nurse Sara comes in to show me how to take care of this set of tubes on my own and then shows me that I also get a snazzy “daytime bag” that I can strap to my leg when I want to go out and about. OOOh, a fancy pee bag accessory – IT’S A FUCKING PEE BAG – not a clutch. I laugh because I doubt that I’ll be all that concerned about the size and shape of bag when there’s a fucking gigantic garden house dangling between my legs. Sara leaves me to the business of figuring out how to dress to accommodate the gargantuan hose and bag. When Paige lets me know she’s close, I ask Sara if I can leave, and she gives me the okay…at this point I couldn’t bear another minute after listening to the dude in the next room grunt for two hours while someone else kept their finger on the call button almost the whole time I was there. I’m outtie.

Not so fast, says the Drop Dead Fred look-a-like at check out. You must check out. I tell DDF, no, I don’t, I was dismissed by the ER. Yes, yes, you do says DDF. He demands my checkout papers. I don’t have any DDF, I tell him. DDF asks if I have any papers from the ER, I say yes, and he demands I turn them over. So I slam my pee bag on his desk, and open my backpack and hand him the papers. DDF peruses them and says, um, yeah, you don’t have to check out. I grab my pee bag and leave in a huff.

I keep falling asleep on the way home, because I am exhausted. Paige and I hit Wendy’s because the last thing I ate I can’t remember. When I get home, pop a muscle relaxer, have some herbal meds, empty the pee bags and pass out in sweet sleep. When I wake up in four hours, the pee bags must again be emptied, as they fill quickly when you sleep.

I’ve since named the pee bags. Tweedle Dee and Tweedle Fucking Dumber. I carry the big one around in my backpack, the little one’s pinned to my side. There’s no getting comfortable, only being able to tolerate the positions. It still feels like having to pee all the time. Like there a rock stuck in my vagina on the end of stick. And while I am grateful for being able to sleep for more than 1 hour at a time, I still have to get up and drain them at least twice a night.

This is my new reality, and why I am so angry. Like I told my nurses, I knew something like this would be down the road, I am not a pollyfuckinganna. I just wanted those last two months, the two months when I could feel like a normal human, not a fucking cancerous blob, who will just sit in bed and wait to die. I wanted quality over quantity. This is not quality. This is a nightmarish hellscape that I am not waking up from. Yes, it could be worse, which is easy to say when you aren’t the one with the pee bags. I know it could be worse, and I am grateful that it’s not. But today when the Urology dept called for my follow-up and said my appointment to determine if they would remove the catheter would be September 14th, that was the last straw. No Riot Fest. No Whoopie Pie Festival. No more swimming. No more baths, no more hot tubs. Just fucking days of emptying and cleaning pee bags, self medicating and sleeping because there’s not much else I can do. I can’t even go to the beach because SAND. I am not happy. I am not.

So before you try and turn my frown upside down, please understand I need to be angry, I need to be able to feel sorry for myself. I need to say that cancer sucks, and it’s a horrible insidious disease, and that I have every right to be upset that my life is completely different today that it was last week. I don’t know what I did in a past life to deserve this, but when I look back on everything I’ve gone through in my life, I kinda feel I’ve been cheated a little. This will pass in a few days I know, but for now I don’t want to talk anymore about it, or pretend my world is a happy fairyland where unicorns play candyland with talking bears. I am grateful for all of the concern, and love, and caring, and well wishes, and prayers, I truly, profoundly am, but I am still coming to terms with what is reality.

And with that my friends, I am going to go have a nice shower with TD1 and TFD2. Good times. I’ll be back to my normal self eventually.


Some Days Suck

It’s been a while my friends.

I probably should have done this last night when I couldn’t sleep. As usual of late, I always have good intentions to write more frequently, and then I come home and I’m nauseated or in pain or just so tired, that I say “I’ll do it later” and either medicate myself into oblivion, or fall asleep. So, sorry.

Edit: I was in a bad place writing this, but like I’ve said before, this blog is for me rather than anyone reading it, and I have to be honest about what is in my head, for my own sake. So don’t get all weird on me.

And I should write more. Instead of letting shit fester and boil and then find myself driving along the Burma road bursting into tears because I didn’t get to pick huckleberries with my son this year, and I don’t know if there will be a next year. Full fucking meltdown. Followed by another after I pulled my shit together and kept my appointment, and headed home. I am a mess today. Probably because I couldn’t sleep last night and I am just that much more tired than I have been lately.

That’s the fucking thing about having cancer. I don’t look like that little beast inside me is doing any damage. I’m still fat. Cancer twice and I am still the size of fucking heifer. Another 50 pounds would have been great…

PAUSE

I am about to begin a very negative bit here about everything that sucks about having cancer. Or that I can think of. So leave now, because I don’t want pity later. I am so entitled to this rant because it’s less than a month until my scans and dr appointment. It’s just gonna say what I already know (and am daily terrified about) – that pufferfish grew some more. I’m starting to have real pain again, and I can feel the increasing pressure As if the resurgence of pain wasn’t a gift on its own, the Tamoxifen makes me have hot flashes throughout the day, or want to puke, or makes me cold. My toes are periodically numb. Or sometimes they feel like someone is hammering razor blades into my toes. My days are about sleeping or thinking about sleeping. I am scared. Terrified even. And again, not of dying, because that’s not what frightens me. What frightens me is when Andy asks what is going to happen next and I can’t answer him, and I think about just ending it now, before it gets worse, because it isn’t fair to him. Don’t get all twisted, I’m not making plans, but if I am gonna be true to myself, I need to say what’s real, and not some pretty fairy tale that makes a good read. I’m typing through the tears, because it’s a day where I can’t just force rainbows and unicorns out my ass.

I spend a lot of time trying to stay positive. And I normally am. But I can’t pretend that cancer is not the omnipresent force in my life. I get up to walk, I feel it; I sit, I feel it; I try to sleep, it’s there. It’s in my waking thoughts and in my nightmares. I think about clinical trials and what I will hear at my next appointment. The only time I don’t think about it as much is when I find the perfect balance of medication to bring me bliss. And it’s not happening today – I am waiting for prescription in the mail, and my natural medication is just not as effective as usual, so I am a moody, whiny, blob.

I’ve decided to stop here. I have good things I want to write about, and I will either later or tomorrow. I feel like I’ve purged some of the icky and actually feel tired, and want to sleep. Be well, and I’ll be back.

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