welcome to the danger zone

Posts tagged “amusement

Sometimes, Life Throws Me a Bone

Tonight was The Menzingers at Union Transfer in Philly (awesome set, nice venue) with Mewithoutyou (great performance) and two other bands…one I missed because they closed a road in Fairmont Park and put up no signs causing mass chaos and delaying us. Got to hang out with Lizz and Blaine and had a mostly painless night. It was a rough day emotionally, so I’ll take the absence of any kind of pain.

Picture it – 2am, there I was, driving home in the rain, Andy passed out in the passenger’s seat. I was listening to the Jealous Sound, enjoying the dark, wet night, singing (or wailing as some might say) when I notice something that looks like a leaf crossing the road. It bounced 3 times before it I realized it was no leaf, it was a frog. A very brave frog who decided to cross the road. She was just a wee thing. But it reminded me that life is tough and all, but it’s got cute little surprises now and again. A brief bit of joy in the night. AND then I saw a second one. Double happiness. Two tough little buggers.

But because I am me, I immediately thought perhaps this is the apocalypse, and it’s raining frogs? Or does it rain blood? I forget.

In other news, I bought a panda suit today. Because life is too short to not have a panda suit. Really I just wanted the head, but apparently all the available panda heads are just ugly. I can’t wait to sit on the porch and wave to cars.

And I’m thankful.

And now, I’m going to crawl into bed, and watch last season of Vikings again. Goodnight pumpkins, Dr. is Monday, so I’ll be back soon.

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Beating Back the Blackness

So as I was shoving that third piece of pizza into the yawning chasm of my mouth, I finally gave in and accepted that I am sunk in blackness and I was stuffing my feelings. Also why I have put off writing for so long again. Because I’m a scaredy cat. Not like a cheetah or a lynx, but like a big ol’ cowardly lioness. And it’s paralyzing.

I promised myself that I would write first about the good things, because there have been a lot and when I look back at them, I feel like a whiner for feeling the way I do. Of course that doesn’t make my pain and weakness go away, or make it any less valid, but I am grateful for so much and for the people in my life, and I don’t say it enough. So let’s do this, and if I am not ready to pass out when I get through the good, then we’ll move on to the bad. If not, there’s always tomorrow.

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OWTH

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Silent Bell

So first there was the fabulous road trip to Minneapolis. Once again, Andy and I hit the road for punk rock adventure. Andy got me tickets to Dillinger Four’s 21 birthday 4th of July Show at the Triple Rock in Minneapolis. We drove straight from home to Minneapolis, speeding through the dark night through the states of Ohio, Indiana, and Illinois. Well, okay, it was getting a little light out as we drove through Chicago, but for the most part, dark Indiana, Illinois, and Ohio are similar to the daylight version. Wisconsin was pretty and has a curious number of large animal statues at different roadside shops and hotels. Like a giant moose. Or a giant mouse with cheese. There were more, but Andy wouldn’t pull over for everyone. Minnesota is also quite lovely. We hit the aquarium in the Mall of America, which was small but very cool, unlike the Mall of America, which is, though large, a mall. Okay, okay, it has an aquarium, and that Nickelodeon amusement park area, and a way cool lego store, but bottom line, its a mall, and the massive amount of people and the mindless consumerism reminded me of why I shop online. Of course, that was the first time during the trip my body betrayed me and we headed back to the hotel, which was fabulous. My sore sick body fell in love with the bed, and even more so after I swam for an hour in the pool. The next day, we went to the Minneapolis sculpture garden which was very cool. (Note to self: EARLY mornings and LATE afternoons are best to be outside when your body likes to randoIMAG2366mly overheat to 1000 degrees throughout the day.) They have a giant spoon with a cherry on it that’s a fountain, and a bell that doesn’t ring, for which Andy and I posited theories about what a silent bell represents before moving on to two sculptures which we both decided were representative of vaginas. Once again I had to retire to the hotel to rest before we could go to the D4th show. After a quick nap, we headed out to the Triple Rock. The show was amazing – albeit hot – and I hid behind a tree most of the time avoiding sun. Even cooler than the show was getting to meet Ranae and hang out with her at the show, not to mention that Ryan gave me an awesome gift of the vinyl Jesus and Mary Chain’s Darklands, which is my favorite record of all time. I also got to meet a bunch of great people and make fun of a selfie stick. After the show, Andy and I went back to the hotel to catch a quick nap before the after party, but Andy is a still a young pup and he fell asleep so I ended up going back to see The Underground Railroad to Candyland by myself, which was a big deal, since I never have gone to a club in a strange city by myself. I was glad I did, because they were amazing. Really, every band that played was excellent, we missed some of the openers, but thanks to seeing the line up posted on FB, we got there in plenty of time for OWTH. We also saw Toys That Kill, Dillinger Four, Lftr Pllr (the special guest whom I never heard before but were amazing) Scared of Chaka, Tim Barry and Against Me! It was just one of the best days ever, and after the show, I went back to the room and tried to trick Andy into letting me sleep in, but no, he was up and ready to head back at the crack of dawn. So with a stop at the cheese shop where we bought a ridiculous amount of snacks, we headed home, tired, bruised, but happy happy happy. And Andy and I had only two screaming matches at each other during the whole trip – once at 5am when I needed to pee and couldn’t find a bathroom and the second when we were stuck in traffic in Chicago for 2.5 hours because of those damn hippies at the Grateful Dead thing going on there. Still, it was a fantastically fun weekend and I am so glad we did it. Plus spending the time talking with Andy always is worth it. And Andy got a ton of fireworks that could not be purchased here, so he was very happy too.

Then I got to see two of my oldest and dearest friends, Donna and Denise, who were in town for a wedding. It was 15 years since I’d seen either of them, and it was like we never had been separated. We drank and laughed and looked at photos to point out all the people we knew who were dead. I also got to see all of the kids, which was great. Then we also got together for breakfast which was another laugh riot. It would have been complete if our friend Anne could have joined us, but she had an event that she needed to prep for, so hopefully another time. Nevertheless, we had a blast and we need to not wait so long to hang out the next time.

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me, Denise and Donna

After that, my friend and former common law domestic partner, Debbie, her husband, kids, and her parents, brothers, sister in law, and niece and nephew came to Hershey to meet Andy and I to hit Chocolate World and get some dinner. I hadn’t seen Debbie since Andy’s graduation, and I hadn’t seen her family since Andy was 10. It was a day of great hugs, great laughs, and fun. The girls, Tyler and Kylie, are gorgeous and I adore them. And again, it was like the miles and the years between us just disappeared, I only wish we had had more time to just hang and talk, but I’ll find my way home to the west coast eventually.

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me and Deb

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Jenn, Kellie, Sue, Heidi and moi

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Komodo Dragon

Then was my surprise trip to DC with my friends from work. We left early Saturday and got to DC around noon. After a fun drive with mimosas and my breakfast of brownie, we parked and headed off the Natural History Museum. Now, you may or may not know that the National Mall is under construction which means if you want to get to something on the opposite side you must walk ALL THE WAY AROUND. Now, had I known this I would not have worn my black OWTH shirt and would have applied sunscreen, but I trudged through the heat (and it was fucking hot) darting under shade trees as we traveled along. We paused for rest and put our feet in the fountain on the mall, which was enjoyable until you realized how warm the water was. I saw my favorite strange bunny sculpture,  but my phone dieIMAG2453d so there are no pictures. We checked out the museum, which was crowded but fun, and then took a pedicab back to the hotel which was ultra fun, as I waved, queen-like, to the masses as we traveled. The guy who pedaled our cab was interesting and it made a great way to get back to the hotel. The hotel was very cool, and I had my own room, with another one of those comfy beds. When we got back, we grabbed some drinks and headed up to the rooftop pool, and I got kicked multiple times by a rambunctious child without parental supervision. My leg buckled under me after getting out of the pool, and I had a major cramp, but it went away, and and after a nap, I had a brownie and we headed out to the dinner cruise on the Potomac. Our cab driver was an idiot and it took us twice as long to get there as it would have if we walked, but I couldn’t handle anymore walking. The cruise was very nice, the food was awesome, and I ended up hanging out with Jenn on the observation deck most of the night, just enjoying the night air, the lights on the shore and sailing. Unfortunately there was non-stop “cool jazz” playing and it was making my eyes bleed by the end of the night. After the cruise, we’d planned to go to the hotel bar, but once I got to my room, I was cooked. The next morning we got up and headed out to the National Zoo where we rented me a scooter and began the zoo adventure. Unfortunately, the red pandas were unavailable, and the elephants under quarantine, but the Komodo dragon poked his head out when I got to his enclosure. We got to see some special “double turtles” (see photo) and vultures. I tried to race a cop who was on a segway, realizing after I IMAG2478dared him that I had had a brownie for breakfast and probably shouldn’t have been driving a scooter at all, not to mention racing cops. There were three lazy pandas there though and that was pretty awesome. We made it through the zoo by noon before it got REALLY hot (it was already blazing by then, and not even mid-day). After the zoo, we were all really tired, and headed back home. We stopped to get some fabulous Thai takeout and have lunch at Quaker Steak and Lube, which none of us had been too, and now having been, really have no desire to go again. Tired, and full we finally made it home. It was very fun, and I am jusIMAG2573t glad none of us were arrested. What was even moIMAG2466re special about this trip was that ALL my coworkers contributed to it – they had a pot luck luncheon where we all paid $5 for lunch and we brought a dish, and then the next day, we had a reduced lunch for $3 – which was actually a fundraiser to raise money to do something fun for me. I know I’ve said it before, but I can’t say it enough, I work with the best people – our job may suck, we may bitch and moan, but my friends at work have the most generous hearts, and the fact that they did this for me made the trip even more special – I only hope I can return the kindness for others later. Needless to say, after the trip, my body decided I needed to stay home with crampy legs and nausea, but it was well worth it.

And that brings us today. All that goodness took the edge off the gloom that’s clinging to me. I expect I will write more over the next two weeks as I stress about my upcoming CT scan and Dr. appt. I am bummed that my CT scan is the day before Andy’s birthday, and I am going to try not to read the results until the day after, but let’s be realistic, I’m gonna be hitting refresh until the scan is posted on my online med portal. The next couple months will be busy too, we’re planning to go to Riot Fest, and then I have OWTH tickets for September in Philly and Baltimore, and we got Bouncing Soul tickets in October, and if I can manage it financially, and physically, I want to go to Fest in October too. I’ve been putting these things off for years and I need to do it now or it may never happen, especially since I think there may be chemo ahead and the pain that was my constant companion last year, has returned and PA is still lagging on the medical marijuana bill. Sigh. Call your local representative.

But before I go, I strongly encourage you, if you are a fan of OWTH, or Bad Religion, or good music in general, to go to Ryan’s Anxious and Angry web store and buy something so you can get the free flexi of OWTH covering Bad Religion’s Sorrow. It’s amazing. Just buy something from Ryan even if you don’t want the flexi, because he’s a good guy and is super generous, and is always willing to help people out. And because his cat Stray Charles is blind. Or don’t buy anything and just make a donation to suppor the podcast. And listen to his podcast, which is very interesting if you like punk rock and mental health issues, and has helped a lot of people dealing with mental health concerns know they are not alone. Really, it’s worth the listen. And now it’s time for bathroom trip 5 tonight and then try and sleep. Let’s hope it comes quickly. Sweetest dreams, my dahlings!


Pufferfish’s Evil Return

Well, well, well.

I noticed from the upswing in hits on the blog that people have been anxiously awaiting this blog entry. It’s certainly not one I wanted to write, and it took a few days for me to get my head around the news from the Dr. and actually sit down and write. Mostly I have just been lying in bed, super-high on narcotics and whatever else is lying around, trying to pretend that none of this is happening. Do you think just once, my body and mind could cooperate? Just once, for a few blissful hours of mind and body numbing peace. No fucking way.

First, I couldn’t get numb enough. And believe me I tried. But then things kicked in and I was all sorta fuzzy warm and mellow and just kinda caught in that sweet spot between sleep and awake where you can just lie there and not care. Until the pain started. Then I had to revisit my dear narcotic friends, and a few Advil just for good measure. Next thing you knew, I was asleep. Well, for two hours anyway, because my increasingly smaller bladder had me up stumbling to the bathroom every two hours, as in the new normal in this house. And of course, I need to drink a lot of water, so that fun never stops. But here we are, Sunday morning, almost noon, and I am enjoying the bitter turmeric tea and encouraging it to kill cancer cells as I type.

I suppose I should reveal the news from the Dr. I have already had to text or tell a bunch of people, and first let me say, the words I hate to hear are “I’m sorry” – I know you are, you don’t have to say it. I also hate the sad look. So, if you can spare me any of that, it would be awesome. I am not going anywhere yet, unless the Tamoxifen gives me a heart attack or embolism. I’ll reveal the full prognosis after I set the stage, because even though the moments are etched forever in my brain, they aren’t stuck in yours yet.

So Heidi and I head off to Hershey that morning, bright and chipper. Okay, maybe the chipper part is an exaggeration, since I already viewed the CT scan report online, Friday night, after it was posted. I already knew one of the tumors had shrunken significantly, and that my bladder lining had thickened. I also knew that that fucking pufferfish was living, larger than ever, in the dark vastness of my uterine cavity. Inside of it was no longer a clear or murky liquid, but evil nodules of the deadliest kind (which they might not be, but in my mind, I’d already given the diagnosis). These were new and growing nodules. Evil bits that plague the pufferfish. However, despite the new larger size of the pufferfish, it was not causing me any real pain, that is to say, there was some achiness that I had attributed to just being lazy, but that I now knew to be pressure from the beast. It was not the relentless traumatic pain that I had before that warranted morphine just in order to function. In fact, I could get away most days without any medication at all.

Despite the two young deer that decided that crossing Interstate 81 was a good choice at 9:15 am, we arrived early at the appointment – and of course the waiting room was crowded, but not as crowded as it had been in the past. Of course, I was anxious, but I had kept deluding myself with the thoughts that Dr. K would just tell me it was nothing, put me on hormones, and send me on my way for three months. I was busy checking my facebook between talking to Heidi, or playing Red Herring and thinking “why didn’t I make that neato sign that says “I’m in remission”?” so I could take a selfie later. Then I was called. Well first they called for Diana, and ended up with the wrong person, then they realized their error and came back for me. And it was actually early for my appointment. Omen 1.

Well I went back alone, and was weighed and measured. When I looked at the scale, it looked like I gained three pounds, which was annoying, but turns out, I lost five. It’s hard to read upside down. I went in to the exam room with my nurse, and we did the blood pressure thing and reviewed my meds, and I gave a two for my pain level, and then this unfamiliar nurse left me and told me Dr. K would be in soon. And I waited. And waited. And waited. I heard and saw medical students wandering about, so I knew it was a minion day. This might take a bit.

And I waited. After 45 minutes, there was knock on the door. In came a young woman, who let me know she was a chief resident. She had a copy of my CT report, and asked me the usual minion questions. I told her I had already reviewed my report on line, and compared it to previous reports and she asked me what I thought. I told her I was pleased that one tumor had shrunk, but I was concerned about the other information. She smiled and said the tumor shrinking is good news, right? I agreed, and then she excused herself and told me they would be right back in a few minutes.

And I waited. By this time, I have concluded that this visit is going to have bad news. I never wait this long to see the Dr. It’s almost an hour. Dr. K has a southern drawl. I hear him going in and out of exam rooms, but never mine. My treatment coordinator, Anne, has not arrived to hug me. Something’s up. It’s not the usual laugh riot that my trip to the Dr. usually is. Even though I consciously want to explain away the delay, I know that the last time I had to wait this long, it was not good news at all. Nope. My gut knows this is bad. Omen 2.

Still waiting. The chief minion pokes her head in and says it will be just a few more minutes, smiles and exits. I hear Dr. K in the room next to me talking to the posse. I can’t hear what he is saying, but I am texting Heidi to tell her this is not good and I am still waiting. Then I hear him in the hall, telling someone to go find Anne and tell her he needs her. Then he says, tell her I’m in here, I am going in. And in comes Dr. K, at 11:45ish, with his somber face on. I notice this and say “hey, you have your somber face on,” and he sits down. It is never good when he sits down right away. Omen 3.

He whips out that CT report and begins. He says, well you already saw this, but I’m going over it. I say of course, I saw it, but my medical degree from google and web md are not helping me understand it. He says well the one tumor outside is significantly smaller. I nod. Then he says, but your cyst is back, and bigger, and again I nod. He says that this is not good. The chemo did nothing to the murky death cells in the cyst. They even grew. This is not good at all. We do not want murky death cell growth. He tells me that recurrent endometrial cancer is very bad, and I remind him I have used google and know this. He says that the only thing we can do now is try to stop the cyst from growing and/or keeping cancer from spreading. I nod, I’m on board for this. He sighs.

Anne arrived and she has a serious face on too. The chief minion in the chair aside me is silent. Dr. K says we can try another series of chemo, he can put me on a chemo pill, or we can do nothing. Ruling out “do nothing” as an option, I ask him what he thinks I should do, since he is the professional. and has a degree in medicine from a school and not web md, and he says that I have had a rough round of chemo and I should take the pill for three months, and enjoy my summer. Then he throws out “I am not going to bullshit you, if this things grows or spreads, this cancer is going to kill you.” Bottom line. He can’t give me a time frame or an idea of progression, but I know Dr. K long enough now that he wouldn’t be telling me this if it wasn’t a likely outcome. He then reminds me that I am not a candidate for surgery because of where and how this thing is situated and that even if I was, that again, he would have to remove my bladder, rectum, and as a new added bonus, my vagina. No, that is not anything we’d be considering anyway. Quality of life over quantity. I have done an amazing job keeping it together through all this, even making a few jokes. I ask for more oxycodone, while everyone scurries for my prescriptions and to write orders for CT scans in three months. Dr. K reminds me that I WILL be able to go see OWTH in September if they play in Philly. The grandchildren thing is still not something he can guarantee me, and frankly, it’s probably not likely.

Then he hugs me. I want to break down sobbing but I assure him I’ll be ok. Anne hugs me. I am in a state of shock, I think, and then I cry a little. I don’t want to go to check-out sobbing, because I will scare the other patients. I am choking it back. I am saying all the things that other people will say to me over the next few days in my head, there’s always miracles, get a second opinion, be positive – you know, all the shit that people say when they are trying to make you feel better. I let Heidi know I’m out and then I go to check out and stuff my bag with tissues, because the breakdown is coming.

I successfully hold it together until I get to Heidi’s car. Then I tell her my prognosis, and cry a little. Then we go to lunch. At Houlihan’s. I have two hard cherry lemonades. I am relaxed. I can deal with this, but I am devastated that I will have to tell Andy. I don’t want to ruin his future plans and make him feel like he has to put his life on hold while I wait for cancer to finish me off. I don’t want him to have to be without his mom. I don’t want to have to tell him.

For the record, I have told brother’s Michael and Alan that I am on Tamoxifen for three months, and that we will see what happens when we have CT scans in August. I didn’t tell them the endometrial cancer will likely kill me part. I am sure someone I have told or that reads this blog will spill the beans, but I couldn’t. I am also not telling my dad or my other brothers. I am sure again, that someone will tell them even though I DO NOT want them to know. I couldn’t not blog about it, because frankly I am tired of telling people and facing the sad face and hearing words that do nothing to make either of us feel better.

So for right now, I am in limbo. Knowing the history of this pufferfish and its habits, it’s more likely to keep growing than not. I am taking Tamoxifen twice a day, and hoping it helps. I am drinking turmeric tea and trying to eat better. I am chanting for healing. I am visualizing the pufferfish drying up and vanishing, but I also know better than to dismiss the likely reality. As I’ve pointed out to many of my friends, there are advantages. I’ll be able to get a prescription for medical marijuana when the law passes here in PA, and I will probably never have to pay back my student loans. One of the possible side effects of the Tamoxifen is that I may lose weight (I could also gain it, or die of an embolism, heart attack or stroke). So who knows?

Strangely enough, I am also okay with this. Knowing beats waiting for the other shoe to drop. And I can finally go get that new tattoo and get my ears pierced so I can get big gold hoops that say “sexy” and “baby” to rock with my bald ostrich head. And I only need to get through 2.5 months before my next CT scan before I know if the tamoxifen had any effect. Oh, and I get to return to work full-time on June 8th. Woo hoo. I probably could have had my Dr. write me off for the whole summer if I asked, but hell, I am tired of not getting a paycheck and having to rely on Andy for money. So we’ll see how this all works out.

That my friends, it the story. Now I’m off to make some lunch, or take a nap, or something. Enjoy your Sunday afternoon. Peace out.

PS. I have this goal of reading 1000 books before I die. I am on number 2. However, it’s heavy on feminist theory, so it could be a while. But you should be happy because it’s about feminism and you know how I love that. Just wait.

BTW, if you like this or any of my entries, hit the ol’ like button on this page. Maybe more people will read it then. And it gives me a happy star when someone likes my entry. It’s the little things, folks.

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I Am Mad as Hell (So I Am Gonna Blog About It)

Unfortunately, I am curious. Some might say fortunately, but no, curiosity is curse for someone like me.

Why, you ask? Because I like to learn things. I read articles, watch “educational programs,” (and yes, my fair share of reality TV, including some Real Housewives and yes, Dance Moms, but only to increase my knowledge of pop culture, haha), I have recently added to my bucket list (note to self: find out the origins of “bucket list”) the task of reading 1000 books before I die (and with my current medical issues, this may be a more gargantuan task than normal). I love to listen to stories of people who have lived lives different from mine. I like to learn about opposing opinions when people can articulate them well, rather than resorting to what they learned from talking points. I like knowledge. But when I learn things, I get angry. And things I learned today made me super angry.

Before we go there, I will tell you a little story. I once had to read a fairly boring and dry book by and about some historical figure in graduate school. I had to be the person who presented the book and led the class discussion, but I stopped reading the book around page 400 of a 500+ page book because it was redundant and narcissistic (not unlike my blog in that respect) and it was unlikely that anything the author said in those last 100 or so pages was any different than anything he had not already said repeatedly in the first 400. I believe it was called The Education of Henry Adams – supposedly a book from the American Studies “canon”. This was the book that showed me that cemeteries are great places to read, because you have no distractions.*(see footnote) I believe the general premise was that Mr. Adams had the best education ever and every educational system that was not like his own personal experience sucked, and that he was the best educated person he knew. Anyway, that simple classroom exercise later influenced my teaching practices to include making my students read a book about a person they did not admire – and learn something from them. The point being, that even the things that we hate or despise or loathe, can teach us something if we force ourselves to see through the eyes of the things we do not like. To educate ourselves about the things we oppose in order to properly hold that opinion So with that in mind, we shall begin.

So the things that are pissing me off today are:

Homophobes, misogynists, men’s rights groups and their counterpart, father’s rights groups, racists, sheeple, badly designed facebook business pages, and their counterpart, shitty business websites, the health insurance industry, poverty, injustice, political corruption, poor education and standardized testing, the absence of the McRib (okay, that’s really not pissing me off, just makes me sad) cancer, mistreatment of LGBT foster kids, the apathy of Americans toward their political system and war. And sex trafficking. And genocide. And bad grammar. And the Oxford comma. And climate change deniers. And using religion to justify pedophilia, and hate homosexuals. And pedophilia and child abuse and neglect. And people who bully. And the labeling kids bullies, rather than just naming their behaviors. And child psychiatrist who just put kids on drugs instead of encouraging parents to step up and act like parents. And I am sure there’s more, but that’s enough for today.

Oh, I forgot – pro-life groups. Stay the fuck away from women. We don’t need you to make our decisions. If we want you up in our uteruses, (uteri?) we’ll invite you.

*Intermission*

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Okay, so I snuck out of the house with the car to go sit by a lake and blog. Against medical advice. And two days without effexor so if my flow is a little off that is why. I escaped the tower. I went and got my effexor. I covered a bounced check while I was at it too. Time for sharing. Effexor acts on your serotonin and norepinephrine parts of your brain. Now messing with serotonin is not that much of a biggie, like when you stop taking anti-depressants that just impact that neurotransmitter, you just kind go back to being depressed as the drug wears off, and your brain is still not responding correctly. The norepinephrine, now that gives you wiry brain worms if you miss more than a dose. What are wiry brain worms, you ask? Well, you know that zzzzzzzt sound an electrical short makes? Imagine that in your head ALL FUCKING DAY. Like your brain is short circuiting all day. What I did discover is that singing loud in the car will make that sensation goes away. However, I do not sing very well, but I do it loudly, and no one can just sing all day. Of course, the other way to make it go away is to take the medication, which is why I snuck out of the tower, because I could not go another day with my brain attempting to implode. Now I am happily medicated, sitting by a lake because I needed to self soothe and no one brought me a puppy or baby to cuddle.

(Note: I have a lovely car full of potential clients unloading next to me to have an outing at the lake. Grandma (obvious meth head, or salter) her barely 18 yo daughter and the daughter’s child, and teenage male all have sprags hanging out of their mouths ( not the baby, of course) and hot ashes are sprinkling the baby. Lovely. F bombs all around. Job security. OH wait, there’s another teen mom unloading. And another! Three teen moms all came out of a car clearly not big enough for three car seats. Damn it. Caseworker brain off, and they are here to have a photo shoot with grandma and child #1 on a dock at a boat launch with no safety floatation devices, (my guess is that none of them can swim) and if the child falls into the water, guess which great bald-headed whale is going to have to jump in to save said drowning child? Well on the plus side, it will at least soothe the child’s burns from the cig ash.

Back to my anger fueled rant. I am not going to point out the stupidity of any of the things that I am angry about today, but rather, since I did some “tuning into self and others” on my way here, I am just gonna ramble. First, there was a female college student who was apparently murdered because she turned her school’s rugby team into the administration for chanting a vile hateful chant about rape and necrophilia and it was caught on tape. The school disbanded the rugby team, whose members then decided to threaten this young woman’s life. When the young woman told the administration, they said there was nothing they could do ( I paraphrased here – here are some articles http://jezebel.com/entire-college-rugby-team-suspended-over-recorded-fuck-1692488876 and http://jezebel.com/college-accused-of-ignoring-threats-before-murder-of-fe-1703069555 – these articles do not link the two events, but others do) And now she’s dead – strangled at school. And men’s rights groups are cheering about it, with comments like “she took one for the team.” Disgusting vile pigs. Not men, beasts who think only of their needs and selves. And if you are one of those men’s rights assholevists, fuck you and your misandry. You have lost no rights, you have no fear of violence anytime you are alone, no one fails to take you seriously because of your gender, you still make more money, get more opportunities and have more advantages in this messed up culture than me. If you want to take on “reproductive rights”, then how about you make sure you don’t “accidentally” get us pregnant? Take responsibility for birth control. That is a right no one is interested in taking that away from you. You can’t expect a woman to include you in the decision about what to do about an unwanted pregnancy when you did nothing other than ask her if she was on birth control before it happened. Wrap your shit up. Not only does it minimize the likelihood you will become a surprise dad, it also shows you respect her enough to not give her whatever STD you had and forgot to mention. Oh, right…when you passed on those genital warts, you did really think about whether or not she would have cervical cancer because of your gift later in life, because there were no obvious symptoms for her, until she got that uh-oh it’s cancer biopsy.

Now right about now, those people who want to inform me that none of this is a logical or valid argument are like, I’ll set her straight. Don’t waste your valuable typing skills. I don’t care. I will delete it anyway. (for the record, meth grandma is back at the vehicle). I can be Judgey Mc Judgeyoants here, cuz it’s my blog. And truly, while I can be judgmental, and I will admit that, I do try every day to catch myself when being hateful and mean, like with grammy meth head. I remind myself that I don’t know her story, and I try to send thoughts of well being and compassion out to her. It doesn’t make judging her right, and I wouldn’t want to live in a world where we were all the same, but because we live in a culture that tries to make things fit in the right/wrong/black/white mold all the time, we grow up assessing things My job is about assessing things, particularly child safety. But sometimes I am that w. word. The one that rhymes with bong. My goal in life is to accept people without judging, particularly the people I disagree with. I can accept the person and I can continue to reject their philosophies/belief systems when they are detrimental to others, especially those who are culturally “The Other.” If you want to have a debate with me, I’m down for it, but blog comments or facebook posts are not logical debate forums, rather they are opinions. I like lively discourse, but I won’t tolerate pedantic statements and high brow insults. Don’t try to appear the sophisticated intellectual, because dude or dudette, when I turn my serious academic brain on, I will not back down.

*Intermission*

gppy

Well, I left the lake and returned home. Upon opening the laptop, I discovered I had accidentally deleted a large portion of my rant. I am sure it will come back to me another time. In the time that has passed, I was also re-angered by more cultural stupidity. Seeing that I have already blathered on for three or so pages and who knows how many thousands of words – I’ll end it here. I am really tired, and now that I am happily medicated, maybe I can fall asleep at a reasonable time. If you are wondering about the whole cancer thing, scans are Friday and I am tying to focus on other things until then, like, going to see that feminazi film, Mad Max. Oh, there are pictures of my trip today too. I am just too tired to post them now. Bed time.

anak kirik wengi sing apik!

*well, there are those squirrels, woodpeckers, bits of foil, grass, chuck-chucks (aka groundhogs), sticks, robins, chipmunks, lawnmowers, clouds, a breeze…

 


The Most Wonderful Day of the Year

Okay, it was three days, but that would make a super-long title, and I was trying to be succinct. (As if that ever happens.) I bet you thought I was going to write about Chemo Day, but that’s today, and hasn’t technically happened yet, except for the pre-gaming with Decadron and water and the daily cancer killing tea. I still need to shower and pack my stuff for the day, and am faced with the usual decision of do I take my cute pink back pack and carry the lap-top separately or do I take the black one with wheels? I am leaning towards wheels today because it fits more and well, has wheels, and I’m not feeling my best but I don’t seem to have a cold or ebola, and I don’t have a fever – which is awesome because I was scared I would be sick today and then have to postpone today’s fun fun fun. My chemo-buddy today is Kellie, who I know is thrilled beyond anything to be accompanying me to today’s festivities.

BUT! This entry is about the best three days I have had in a long, long, long, long time. If you have reading my blog, you know Off With Their Heads is one of my very most favorite bands. Listening to their record In Desolation (“Drive” video here) got me through my first six weeks of radiation and all that first round of chemo and their music accompanies to nearly all of my drives to and from Hershey over the last 3.5 years. When I remember my headphones, I listen to Ryan’s Anxious and Angry podcasts at work, or in the car. The music has become part of my support system. Well, Thursday, Andy and I drove to Pittsburgh on what was supposed to be a beautiful day to see OWTH play at Howler’s Coyote Cafe (note: saw no coyotes – I would make a cougar joke here, but I find the term cougar offensive, I prefer tigermom). Their show was amazing, the energy and passion of the band was amazing. They played songs from all of their records, and Ryan was awesome. The energy was awesome. The opening bands – World’s Scariest Police Chases, Barons, and PEARS – were all incredible. I met an internet friend, Erica, her husband Brian and some of her friends at the show – we became friend because we both like OWTH and punk music in general, and surprise, we are both work with kids in the system – I snatch ’em and she assists the ones that the court declares incompetent. After the show, I got to get hugs from Ryan and talk to him for a little while, which is always fan-girlie for me, because I can’t believe someone that I look up to takes time to talk to me. I got to introduce him to Andy too, which was cool. I had to have a drink with him, but alas, Howler’s is a bar that allows smoking, and by the time the shows were over, I was dizzy and shaky and a little nauseous and just wanted to go home. Ryan said they would probably be playing in Philly in September, so I hope to have that drink with him then. It was an amazing night. I also got to meet and talk to Zack from Barons while I was standing outside the bar waiting for Andy to bring the car around. Fucking stupendous night. (and if you read this Ryan – THANK YOU for being who you are – you made my night)

Day two was supposed to be the Warhol Museum, but Andy and I decided that even though it was snowing, we were doing the Pittsburgh Zoo and PPG Aquarium, because when I have to choose between becoming more cultured or seeing animals and making animal noises, I will ALWAYS choose the latter. Bring on the Komodo dragon, red pandas, and giraffes. And very sad elephants. And PUFFERFISH. Several different kinds of pufferfish, evil, evil pufferfish. Did I mention that the Zoo is on a hill? Or should I say a mountain? Because it’s a mountain. A huge mountain. And Andy would not push me in a “safari cruiser” IE. wheelchair. So I had to walk. Wearing heavy Doc’s sandals. Carrying water. It was brutal. We probably walked at negative 1 mph. Lots of heaving breathing and a frequently sweating head that was frosted by the subzero wind chill and flurries. It was fun though, spending time with Andy, telling him about the trips to the zoos and aquariums when we lived in California, making animals sounds, trying to find the animals that were clearly not home, and making flattened pennies like when he was 5. Afterwards we went back to the condo, got some great Italian beef sandwiches from a tiny place called Tooties (yum!), then just hung out and watched non-cable tv and napped. Later we got pizza from this greek pizza place called Ephesus, and again, awesome food. We just hung out and talked and slept the rest of the evening.

Saturday, we got up, cleaned up the condo, packed and headed out to an overlook to see Pittsburgh from the top of one many hills. Pittsburgh is an awesome city. We found an overlook, not the one we were looking at because in addition to sucking at taking night pictures all of the sudden, my phone’s GPS takes us to places that don’t exist. Or rather, when asked to take us to a location, it agrees but then leaves us in spots that are clearly not even remotely near where we asked to be. We did get to see a lot of Pittsburgh though, and Andy is even considering going out to Pittsburgh to finish school (YAY, FUCK YEAH!) Fortunately, the GPS cooperated with taking us to Abby Lee Miller’s Dance Studio, where I stalked cars pulling into the parking lot to see if there was a real Dance Mom getting out for class. None were available, but there were the cutest little people being brought to class. The studio was less impressive from the outside that it appears on the TV, but it was still cool to see it. Then we headed to Philadelphia. Did I mention it was FREEZING? Like super freezing. And snowy. We got to Philly by about 4, and hung out with Blaine and Lizz and had a delicious dinner from a real Mexican restaurant called El Jarocho that made scrumptious lamb tacos. Then we headed to see TBR/The Wilhelm Scream/ Pennywise, which was a fabulous show, but in my opinion, lacked the energy of the bands on Thursday, although it was very cool to realize that Pennywise has been a band for longer than Andy is alive, and I finally got to see them with their original vocalist. I hadn’t seen them since 2008. Long time. Unfortunately, I got a horrible horrible pain in my side and had to go stand in the back to try to work it out – we ended up leaving before the last song or two, but at least the pain subsided for the most part. We caught a cab back to Blaine’s to get the car, and headed home. But not before we stopped at Wawa, and got to see two drunk girls in ridiculously high heels almost wipe out several times in the store as they tried to outlast the state police DUI checkpoint. Good times.

We finally rolled home about 2 am. The house was freezing, but honestly, it was a small price to pay for such an awesome weekend. It felt so amazing to be among my people, enjoying simple things with my son, and talking about life and lessons and futures and hopes and dreams, and meeting awesome new people, singing at the top of my lungs to songs I love, and finding some peace in all of this. I basically slept through the next day – I was exhausted. I made it to work on Monday, and realized that if I died that day, I’d have no regrets – not like I don’t have plans for the future – but I was pretty damn happy, and would be okay if there wasn’t anything else ahead – I’d made peace with what could lie ahead. And made arrangements with Andy to be turned into fireworks whether things end in the next few years, or 50. I’m okay with it all. That’s not to say that I am not concerned, and wouldn’t prefer to live another 50 years, but whatever is ahead, I’m gonna be okay with it.

I’m actually finishing this early Thursday morning – post chemo. I’m going to stop here, and write about my Dr. visit and chemo later today, because I decided to wind down tonight with a cocoa-vodka/oxycodone mix, so I can sleep pretty soundly tonight. I also drank a lot of water today, so I am trying to avoid waking up ever hour to run to the bathroom. And I’m still feeling okay with my life, and what’s unfolding in it. The three day trip really refreshed me, reminded me that despite the horror of the last year and a half, from the time the pain started to today, dealing with this stupid fucking disease, I’m learning about me and what matters to me again, and finding the strength to make plans again, even if I still can’t act on them. Life is still hard, I’m still not always making the best choices, but this weekend reminded me of the person inside, and what brings me joy. I just need to bring more of it into my life.

So with that said, here’s some of my favorite pictures from the weekend – I didn’t take any pictures at Blaine and Lizz’s house – I don’t know why because their puppy Pancake is a sweet dog and fun to play with. It was great to see them again, and just hang out. But I am derailing again – here’s the pictures, including the evil pufferfish, enjoy them and come back later today to learn what the Dr. said my future looks like…sweet dreams my dahlings, I will have a peaceful early morning rest, hopefully, before the sickness starts.

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The Robin Hunt

I made myself get out of bed and shower this morning. Blame the sun, all warm and golden, blasting through the multiple blankets that I use as curtains during the winter (over the real curtains) to block out the delightful breeze that cools my head which comes through these old windows in my bedroom. (also the reason I can hear every dog-damned word that is spoken/yelled/chattered in the street outside which is why I am sitting here typing instead of sleeping because I took two pills to try and sleep and no sooner than I was sliding into blissful opiate dreamland, inconsiderate people arrived home at 11:30 and had to make sure they slammed ever fucking car and house door they could find while merrily chattering all the way, and ruined that attempt.) So here we are.

In truth, I was going to write this entry early. Then I didn’t because I was consumed by a wave of darkness and to avoid contemplating the sucking blackness, I took a nap. However, after showering, I decided I needed to waste half of a tank of gas and get out in that sunshine and try and dispel the gloom that is wrapping itself around me like a blanket with static cling. I tossed on some sweats, a hoodie, and flipflops, because it is spring you know, and was at least 35 degrees, and out I went. I plugged the phone in for music, and then headed out to the valley. Driving around mindlessly while singing loudly always seems to sort things out, one way or another, so drive it was. I decided I wanted a peanut butter milkshake and a hot dog from Sonic, so I headed in that direction. Of course, my music of choice was loud and fast, as it usually is, unless I am trying to enhance a black mood, when we turn to something in the way of Elliott Smith. But today I needed to sing loudly about pain and depression and sorrow, past regrets and hopelessness, which would also be Elliott Smith, but without the painful plaintiff beauty of his chords. When I hit the quarter mile on the Brandonville Road, I laid my foot down on the gas as took it as it was meant to be driven, easing up as I hit the decline. It felt so good to be out, with the sunroof open, and have that minute or so with nothing more on my mind but that feeling of speed and screaming the lyrics to “Keep Falling Down” loudly, frightening the birds and friendly woodland creatures in earshot.

One good thing about winter is that it covers a lot of sins. Like garbage. Now that the snow is melting and everything is still dead dead dead, all the trash so carelessly tossed out the windows of cars is heaped along the roadside in the little streams of melting snow that run along the road, and around dead deer carcasses. Carcasses, carcassi? Whatever. The Ringtown/Brandonville valley roads are beautiful in spring, summer and fall. In winter, they leave something to be desired. Driving them brings up a lot of memories – from trips to the dairy to get milk with my dad and siblings, driving past the first home I ever knew but can’t remember at the #5 damn, picnics at Stauffer’s park when my parents would spend the day arguing and the kids getting splinters from the rickety old wooden merry-go-round, summer vacations “back home” when I was living in California when we would drive all day, cooler in the back, listening to a mix of Springsteen and Led Zeppelin, and top 40 and that new “punk” music I brought with me from California, and late night drives with quarts of beer between our thighs, laughing and carefree. And hours of driving and thinking. It’s my go to to try and sort shit out, just like driving the coast in California was – well not exactly, because well, oceans make everything better, right, whole. But drive I did. To Sonic. Got my milkshake and some popcorn chicken with barbecue sauce because I hadn’t eaten yet to day. And which I later regretted, because it wasn’t really chicken per se, just some chicken like substance with coating. Should have just stuck with the milkshake.

Anyway, as I drove I noticed that many more homes in the area are littered with shit. No other way to describe it, because it’s just like extra stuff that people own that they won’t throw away but have nowhere to store it so it’s just outside their houses in different states of decay. And I started thinking about whether the outside reflects the inside, or if these people don’t care how their house looks, and when did we start being so concerned with collecting so much stuff that we don’t even have enough places to store it. I always used to envy the houses in the valley because they were so neat and tidy, so pretty, and always wished I could live there, to be away from our too small, too old, too mismatched house. To play in a yard with grass. To not be surrounded with ugly black coal banks everywhere (for you young ‘uns, there was a time when our little town was in the midst of gaping scar of strip mining, surrounded by slate banks – much of that is covered with trees and shrubs now). The valley was where all the happy people must live. Now, I’m not so sure.

Anyway, in my critical analysis of what these signs of decay and garbage mean to society as a whole, I realized it was spring. And spring means robins. I must now find a robin. (Fact: Robins, while not seen much in the winter, do not migrate, they just stay huddled together for warmth. When spring comes, they emerge to seek food – robins are individualistic birds. They only get together to mate and survive winters).

This is now a quest. There are crows. Hawks. Geese. Red-winged blackbirds. Sparrows. Chickadees. No robins. (or bluebirds, for that matter) Where are the robins? I am not going home until I find one. As I continue to meander, I drive past places with memories, still trying to deal with all that is going on in my head. I figure that cemeteries, with their vast open spaces, will be a prime source of robin findage. I head in that direction. Then out of the corner of my eye, I spot a red breast, but I am driving way too fast to clearly confirm robin sightage. I am fairly certain that it was one, but until I can definitively confirm that it was robin, we shall continue to drive.

People who know me, know that cemeteries are like one of my favorite places in the world. I love the peace and sanctuary of cemeteries. Unfortunately, and in my opinion, oddly, the cemeteries are still mostly snow covered despite the last two days of sun, and their clear open spaces with direct sunlight. Much of the snow elsewhere is melted, but not really in the cemeteries. And no robins. I do notice a tombstone of a friend’s husband – her name is on it too, waiting for her. I think how odd, that your space is already reserved. Not that I don’t have plans for my own death rituals (which some of you will now be please to know, no longer include Andy having to chop up my body for the vultures to eat for a traditional sky burial, but do now include my ashes being made into bottle rockets and other firecrackers that can be launched into the sky). I am also looking for a trash can now as well as robins, to get rid of the evidence that I have been to Sonic. I check three different cemeteries, and nope, no robins. Just crows.

I’ve been driving for a little more than two hours now. I have managed to negotiate the roads well, missing all of the deepest and widest potholes. I feel bad for feeling sorry for myself just because I have cancer, since my drive has reminded me that many of my friends have recently suffered tragic losses in their lives and illnesses in their own families, and that there are people who live in countries that have no electricity or water. Some watch their families slaughter or live in countries at war where their homes could be torn apart by missiles or a tank at any moment. And here I am whining about having cancer. I need to be slapped. Don’t get me wrong, I am still depressed. I still feel hopeless, and scared and angry. But I am starting to see that it’s not as bad as it is for some people in this world. I decided I am going to take one more road to see if I can find robins, and then head home. My world is dark right now, but I’ll get through it. I’ve been through darker and more painful times, I’ve faced fear before. I just wallow a few days and get over it. But first, I need that robin.

I drive past the spring where we’d get water in the summer and wash cars and drink beer alongside the road outside of Brandonville. I remember being very stoned and listening to the Cars debut album over and over. And being very wet. We washed a lot of cars there when we were teenagers. And drank a lot of beer. I cruise through Mahanoy City, remembering a time when it was a pretty town, much like Shenandoah used to be, but now is just old and tired, full of rotting/abandoned/decrepit/burned out buildings, and covered in the grime of the coal region. I drive out towards Frackville, past the prison, and co-gen plants, sad that this is what’s left for this area. And then I see it. A fucking robin. No mistaking it this time. A fucking robin. Mission Accomplished. It’s all hopping around, looking for food on a partially snow covered lawn. Boom.

And I headed home.

Now I’m here. I am not sure how I feel, but I know I’m going to work tomorrow because I already promised to cover intake for someone since it’s Monday and they need to be in court. And I’ll be there Wednesday, because it’s a morale event, and I said I would bring cream cheese. Thursday we are headed to Pittsburgh to see Off With Their Heads play and stay at my brother’s condo. Friday, we are going to the Warhol Museum, and I don’t know what else. Saturday, we are going to see Pennywise in Philadelphia. Now this may seem like an expensive week, but the tickets for OWTH were only $12, and the condo is free. Pennywise tickets were only $25, and Andy is paying for those as well as for the Warhol Museum. We need to do something fun, to get us out of this rut we are both in. Fortunately, we like many of the same bands, so it’s something we can do together. So at least I have something to look forward to this week – and next week is…drum roll….CHEMO and another stretch of being confined to my bed for a week while I try to like the way water tastes. Life could be worse, and that is what I am hanging on to. Because when I lie in bed, tossing, it seems like there’s not but a black hole that’s sucking me in.

My friends, it appears that most of the neighbors have finally gone to bed, and the next sound to wake me up with be newspaper delivery in about 4 hours. Fortunately I had a nap this afternoon. Tomorrow is work, and more blood tests (it’s CA125 test day) and I get two stickers this time, because last time someone was in the sticker room when I was done my blood draw, and I couldn’t get one. I will have to share a pic of my prizes in the “no sticker, no blood” collection. I’ve got all kinds now, and will have to start another sheet soon. Hopefully, blood sucking will be followed by dinner with my shark sister Ashley at this Himalayan restaurant we both want to try. So there are things to look forward too. Life doesn’t suck that hard, I guess.

The itching of my eyes indicates I should rest, particularly since I still don’t know where my glasses are. Hopefully, writing tonight will keep me from too much tossing and turning. Sleep well my loves, and pleasant dreams to you all, and happy Monday. Be a busy worker bee.


Just A Lot of Whining

It’s never a good sign when I go to start writing and can’t find my glasses. I mean, I can do this without them, that’s what the little magnifying glass is for, to make this shit bigger so I can see it. But I’ve been having a lot of anxiety lately and now, being unable to remember where I put my glasses is going to be added to that mess of thoughts that are rattling around in my skull.

Anyway, I’ve not been writing – not because I haven’t wanted to, because I have, but there was a 10 day stretch where I couldn’t sit up for extended periods which makes the whole typing thing a bit difficult. Like I said, I have had some serious anxiety, something I have never really had before in my life, not at this level. I know it’s related to the c-monster and the uncertainty that is part of this go round with this nonsense. I also know that writing would also help to purge some of it, and I haven’t been able to. I also realized today that I am also really angry this time, angry that I have to deal with this again, angry that I have to put my life on fucking hold because I live in a country that doesn’t believe in national health care. You see, when you have cancer, it’s not like having diabetes or high blood pressure, stuff that is serious, but manageable and affordable for the most part. If I lose my health insurance, I am fucked. I mean, I know that I can still get treatment, but not the best, and certainly not without the added stress of worrying about how to pay for it. So, even though I have FMLA, because there is no finite end of this in sight, I am constantly in fear that I will lose my job, and with it my health insurance which has thus far assured me that I will have quality care. And in my reading over the last few weeks, I’ve learned that while I cannot be denied insurance for a pre-existing medical condition, I can be denied coverage for treatment related to that condition. For example, I can still get health insurance, but they don’t have to pay for ongoing cancer treatments, as long as they cover everything else. This information adds to the anxiety. I am not going to belabor this, I just need to say that it makes me angry that human life is only valuable when it furthers a fucking political agenda. Adequate health and quality health care shouldn’t be something anyone has to worry about. But I live in America, where what you get is what you can afford. I shouldn’t have to worry about things like this, I should be able to focus on getting well but the reality is that I can’t just worry about my health, I have to worry about being able to keep health insurance so I can get treatment I need.

It all comes down to the fact that this time, the c-beast is still inside me. They can’t just cut it out and give me chemo to track down and kill any escapees. All the visualization in the world will not erase from my mind the fact that my whole life is on hold while I wait to see if heavy metal poisoning will stop these arrogant killer cells from multiplying, and hopefully they die off and leave me alone. And unless it vanishes, that shit will remain inside me, waiting, taunting me. I don’t believe I will live in fear, but it’s always going to be there, in the back of my mind. Every pain, every discharge, every weird wiggle or twitch in my body will have me wondering what is going on inside. I am angry about that. I am angry that I have to endure this again, that I have to spend 10 days in bed because I can’t sit up without wanting to hurl, and there’s nothing to hurl, because I’ve eaten so little that it’s all bile. And all of this leaves me scared; I can put on the happy face, I can make jokes, I can smile and laugh and pretend it’s all ok, but I am fucking scared to death that it won’t be, and then I feel guilty because I then thing my thoughts will create my reality and …WHAT THE FUCK IS WRONG WITH ME??? Maybe I remember that the last time I went through this I was much stronger and positive, but then maybe that was just the way memory works, maybe I felt the very same way.

So yeah, I don’t know if it’s the same for everyone who has cancer, but I lie in bed at night and wonder what I did to deserve this. Was it something I ate? Having the laptop on my lap? Being a fat cow? Negative thoughts? Thinking badly about others? Revenge? Consequences of bad decision making? Drug use? It’s just not fair. I want my life back, I want to just be the happy and carefree grasshopper that I used to be. And then I go downstairs and I see Andy lying on the couch asleep on a Saturday night and I feel like it’s all my fault he’s there because his paycheck goes to making sure we have food and electricity instead of alcohol and clubs like it should be for a 23 year old. The last place I was on a Saturday night when I was 23 was asleep on the couch, unless it was because I didn’t get home until early afternoon. And even then I was probably going to spend some money on some substance that would keep me up for another 24 hours. I accept that my teeth are shit for those poor choices, but that should be enough punishment. The poor kid works overtime almost every day. He shouldn’t be here taking care of his mother, it is my job to take care of him. It’s wrong.

I swore I wasn’t going to whine about cancer incessantly when I started writing this but it’s hard not to when your whole day revolves around whether or not you are sick or going to blood tests or appointments or wondering how bills get paid and how to keep your health insurance. I sometimes wonder if I sleep so much because I am sick, or because I don’t want to have to think. (I know it’s because I am sick, but I can’t help wondering). I’m scared and I’m angry and I am worried. I wish I could break down and cry but my stomach ties up in knots and my chest gets tight and I toss and turn and wish I could just forget for a while what day it is in my treatment cycle and forget when I have to go back. I’m 2/3 done with this series of treatments, and my numbers look good, but at my last doctor’s appointment, Dr. K pointed out that while my numbers look good, they aren’t where he wants them to be at this point, so he subtly hinted that six cycles may not be the end of my treatment. And so, the end I was keeping in sight, is no longer so clearly defined. And sure, I know many of you are thinking but he didn’t say you have to have more treatment, and be positive, and stay focused and blah blah blah. Easy to say when the tumor is not inside of you, and trust me, I remind myself of all of those things a million times a day, while I count the hours until the next CA125 test to see where that fucking number is, knowing that even if it’s improved, it’s not a guarantee. Everything is so much more complicated this time, and as a result, my mind is constantly picking apart every twinge and tickle.

And since I can’t literally kick the shit out of the monster inside me, I let other things frustrate me, and then I hate myself for that, because I am not that person. I want to be Polly-fucking-sunshine and I can’t be, even though I constantly try. And lets not even talk about disaster house, my prison during my sick days. I spent two hours today trying to do some organizing and hardly made a dent. I ask Andy to do stuff, but let’s be realistic, the kid works 12 hr days for 5 days a week, and I am not gonna wake him up to ask him to clean the bathroom or do dishes. My friends offer to come help, but I am too ashamed to let anyone in to see the disaster this house has become, and I can’t do anything myself. I feel pleased making my bed and hanging my clothes on hangers. I vacuumed 9 steps the other day, and was too tired to finish, which then made me angry that I can’t fucking do anything. I would wish the house would burn down, and let me start fresh, but that would affect my neighbors and that just wouldn’t be fair.

So yeah, I’m pretty frustrated. It will pass eventually, I’ll get to a better place but in the meantime, I’m in this dark place trying to stay all sunny and hopeful. What I really planned to do when I started to write was to write about the amazing kids my son went to school with at Milton Hershey School (go ahead, click and visit them, this will be here when you get back) and how they started to raise money for me to get my own car so I don’t have to rely on Andy all the time because right now we have one car, and Andy has to drive me places and pick me up, after he works all night. I can drive myself, but when he’s not here and has the car, I’m stuck because I can’t really walk anywhere for anything. It’s on gofundme – it’s amazing to see what some of these young adults donated – crazy – for me, and their messages – it touched me beyond belief. I only found out by accident, and Andy had no idea either. More than the money is that these amazing kids wanted to do this for me, and help Andy and I. But maybe even more touching was the lady at the pharmacy the other day when we were coming back from Hershey. I went in to pick up my “auto refill” pills, which were only partially refilled, so I had to wait. This older woman came in, she was 75, and her refill was also “auto refilled” which meant she had to wait too. We started talking, as my bald head kinda clued her in to my cancer, and she told me how she had a quadruple bypass and then had clots in her lungs and died three times on the operating table. (For the record, she also told me there was no light, and none of that nonsense all those people who died claimed to see) She was a very religious lady, and kept telling me she was testifying. When they called her for her prescription, we ended up hugging each other. As she was leaving, she shoved five dollars into my hand and insisted I take it, and we wished each other well. I was moved by how much a stranger cared about me, and how you can make a connection in the most unlikely of places, on a day when I felt like walking death, and all I wanted was to get home and get back into bed. Of course, I realized that had they not screwed up both of our prescriptions, our paths would never have crossed. Still, it doesn’t mean I am not changing pharmacies, because I am tired of their mess ups. Anyway, it was serendipitous moment that made my day.

Well I think I pretty much got a lot of my ire out in this post. Wasn’t the funniest or most reflective one I ever wrote, and totally not what I was planning in my head, but it’s good enough for me. I’m gonna try and get some sleep, since I want to try to get a few things done tomorrow. At least get a load of laundry or two washed, so that’s it for now lovelies. Be well and enjoy the start of spring. I’m gonna go spend a few hours chanting and hope it lulls me to sleep. Sleep tight.


Late Night Chats with the Zombie Monkey

So here we are, 2:49 am. I’ve clipped my finger claws, restrung my mandala (someday I will figure out how a bead fell off and left me with 107 beads…and the bead that fell off, perfectly normal), took a stroll through the house, and had some quality time chatting with monka-monkey and zombie monkey, listened to three podcasts at Anxious and Angry (you should too) and gave some serious thought to laminating something. So I decided, hey, I’ll blog a bit.

There’s snow on the satellite dish, and I felt guilty asking Andy to go out on the roof and clear it off, so I’ll hope the sun comes out tomorrow, and melts it off. Today was a snow day…although I was already in the car on the way to work before I found out I could have stayed in bed and savored the warm comfy comforter. Needless to say I turned around and hit the grocery store, because naturally, it might be 24 hours before I could again go to the store and buy milk and bread. Or less, because quite frankly, the roads weren’t really too bad on my way home. So there was no TV all day. Not really a bad thing, but I couldn’t get motivated to read, so I started watching Helix on Netflix, and then a quite troubling movie called “Come Back to Me” (you should too). I planned a whole bunch of projects in my head that I will do someday when the energy returns to my body, ate some crackers, and then some more. Such a busy day. Right now, I’m busy hoping there’s a delay in the morning because I am clearly not going to get a lot to sleep.

My weekend plans have fallen apart. There’s a leak in pop’s furnace, which means he’s not going to go, so since taking pop to my brother’s house was the reason we were going, now means we’re not. I was lamenting remaining trapped in the tower, and I realized I have been too much of a whiner lately and need to refocus on being grateful, because quite frankly, so many other people are in far worse straights than I am – I still have a job, I work with a wonderful group of generous, kind, caring people who make being at work bearable. Andy has really stepped up and taken on the responsibility of paying most of the bills, as I have little bitty paychecks since I burned through my paid time off back in December (yay for paid snow days/delays!). We have heat, I have a bed, there’s food in the house, we have a house, a roof, clean running water, indoor plumbing. I have boots. A computer with internet access. I have health insurance, actually, I have excellent health insurance. I have a good education. I like myself, mostly, and I am comfortable being alone. I have multiple talents. I have a nicely shaped skull. I understand the secret language I talk to myself in. I’m kind, funny, and have a vast amount of useless knowledge. These things so far outweigh the negatives in my life, I sometimes get too caught up in those.

So is life hard? Yes. But it’s not the worst place I’ve ever been.

And with that said, I’m gonna try to hit the bed again, not because I think I can, but because my toes are cold.

And spring is only 14 days away. 14 days.


Of Mice and Mummies

There’ something dead in my throat. I am guessing it probably crawled in while I was snoring and became trapped and slowly met its demise. Whatever it is, it’s really nasty and it adds to the nasty metal taste in my mouth that I cannot get rid of. Apparently, I forgot that you don’t get used to chemo as you move further into treatment, you just get sicker. And I am – I am still not up to getting out of bed and driving to Hershey to do my blood work, but that will change tomorrow, because I can’t put it off anymore.

This whole chemo thing is getting boring. TV is boring, being sick is boring, drinking tea is boring and this weather? It sucks. If I ever get cancer again, it better be in the fucking spring, because somehow I think if I could go sit in the sun for a few minutes a day, I’d feel better but alas, I am trapped here in the tower of gloom and clutter with nothing to do but toss side to side and hope to slip into drug enhanced sleep.

The chemo is killing my sense of humor too. I suppose part of that is because I am trapped here in solitary. Of course, I crack myself up, but I am a captive audience. A captive audience with no energy to escape. I did manage a shower today – and I made some toast, so I guess that’s progress. I just feel like my brain is turning into jello – I haven’t had any serious academic conversations in days, nay, months. I feel like a jumbo hamster on a squeaky wheel, just going around and around, with occasional escapes into the real world, until I am captured by the chemo beast and shoved back in the cage. Even pinterest doesn’t hold my attention for things I will never make or buy the way it used to. Red pandas only amuse me for a short while, and alpacas, well they just make me long for a house on the beach. I have this list of things I could probably make while sitting here if only my eyes would agree to stay open for extended periods of time. I mean things have gotten so bad, that I don’t even turn off Hoda and Kathie Lee at 10 am anymore, I just suffer their stupidity. I even find myself watching the 700 Club more than once a week and that doesn’t bring any laughs either. Okay, well it did today, when the only man who I believe is Pat Robertson told some viewer that it was okay that their daughter did yoga, but only if she didn’t chant afterward, because that’s the worship of Hindu gods. The funniest part was the seriousness in which Pat Robertson tried to mimic the chant. I guess you had to be there.

Anyway, I am gonna keep this short, because being in the tower and watching reruns of Kitchen Nightmares and the Middle don’t really make me the wicked conversationalist. I did however watch some show on the History channel last night that has had me thinking all day. Apparently, mummies have enough DNA in the remains that once the technology is available, we can clone, or reanimate them. Now – stay with me on this – the scientists state we aren’t that far off from being able to do this. I mean we have already injected human brain matter into the brains of mice successfully. Reanimation could quite possibly involve retaining all your memories and experiences of your previous life, and then you would start adding new ones. Would that be a good thing? I wonder. I mean some things you want to forget. And if you remember the past, does it also mean that all your ailments and illnesses are also with you? What if you died a particularly painful death? Would you remember that? And would you be reconstituted in the same state you were when you mummified? Would you want that? Would you want to relive all the experiences you had all over again or would you want a fresh start? I tend to believe we are energy just moving from one form to another, so I don’t know that I would like a restart for this life, if I was already dead. Wouldn’t you always wonder if you were still the same as you were, or if something was missing, or damaged? No one who knew you would still be around, so how would you know? And isn’t the choice of whether you come back or not, taken from your hands by whoever manages to bring you back to life? It seems like an easy question at first, but it’s incredibly complicated when you really think about it. I know there are people who have passed in my life that I would never want to have back in my life again, and then there are people I would love to have back, but I’ve moved on, and would they fit into the life I have now? And what about these mice with human brain bits? What do they do with them and whose brain bits are they inserting in there? And what if they escape and start reproducing? Are these random combinations ever a good thing? Maybe we should worry less about GMO corn and more about these human-mouse hybrids. Think about that.

SmartMouse

Well that’s all for now my friends. I’ve exercised my brain more than expected today, and I have some ice cold killers in Alaska to watch now. Have a wonderful afternoon, and wish me luck on getting to Hershey for blood work tomorrow, because I need another sticker for my collection. Plus I am sure the vampires miss me. Until next we meet.


This, That and Other Random Stuff All Tossed Together

For the first time ever, I completely scrapped the post I was writing and decided to start over.

I’ve started and stopped writing entries several times these past two weeks, (there’s extra bonus writing at the end – a longer post I started and didn’t want to keep writing so I’ll just slap it on the end of this one as a bonus). I don’t know what’s keeping me from writing – anxiety, exhaustion, procrastination – I mean I know it’s not because I don’t have anything to write about. Sometimes I think that I avoid it because I don’t want to have to keep whining about this cancer nonsense. I just can’t help that the stupid monster inside of me just kind of pervades my thoughts every day.

I do think of other things – like getting a pet goat, what book I should be reading, how I wish I had a maid, how I am hungry for brownies, that the season premiere of Vikings is next week, how I would rule the world when I am Empress of the Universe, calculations for the diameter of watermelons at the store – you know, important things. It’s not that I don’t want to write – I do – but half of the time, I find myself slipping into medication-assisted sleep, and the other half, I nod off, unmedicated. Some days I am all fired up about some social issue, I get ready to write and then I get distracted and next thing you know, drool is slobbered all over my cheek and my own snoring wakes me up.

Which is exactly what happened after I wrote that last sentence – I fell asleep, laptop in lap, and woke up this morning at 7ish. I had my wonderful morning cancer killing tea, and just finished some yummy oat meal. I realize I have little to complain about this morning – I feel okay, I can make tea in my bedroom with my loverly keurig, and oatmeal too. I am warm, and comfortable, and I can just spend the day doing nothing, which is what Saturday is often about here lately. I’m still undeniably anxious and restless about next week’s events but I’m grateful that I have such amazing health care that I don’t have to worry about the financial side of this. This whole cancer thing does put things in perspective, but I’m still not in that “live every minute as though it was your last” mindset. I am still too scared about what is to come to get there.

But let’s move away from this cancer nonsense and talk about what is going on in the world. I am sure we all know it’s cold. Well those of us in the snowy areas of the northeast do. My county has finally established a foot hold for a shelter for the homeless, but it’s causing quite an uproar because the shelter is part of a store front in the business district of the biggest town in our county, or I guess what has been formerly known as the county seat. The frightened townspeople are afraid that the existence of shelter will lead to more homeless people. Really? Like a funeral home would lead to more dead people? I often wonder when stupidity and hatred became the norm. Why is there so much opposition – I mean there’s already a drug and alcohol rehab on the main thoroughfare, and we still have the same amount of salt heads as ever. The homeless are still gonna be here, people…they will just squat in vacant buildings or spend the day in the library or the night in a laundromat or Wal-Mart , doing what they need to do to keep warm and alive. How stupid people are that thinking helping people who are in danger of hypothermia or frost bite will lead to more people wanting to live on the street. I just have such a hard time reconciling the emphasis in this area on being good Catholic and Christians and then in the next breath not turning your cheek, but rather turning your back on the people who need your christian charity the most. I feel like hell when I am driving my fat ass to work and I see someone walking in this cold, and people here are too worried about their “things” than they are about another person. These are the same people who will wax poetic on the value of a fetus, until that fetus is born and homeless and grows up in poverty. Then they will call my office and ask someone to go out and “take those kids away” forgetting that this was one of those fetuses that they insisted be born into to poverty. End of soapbox tirade. I have others, I’ve just decided if I am going to post anything, it’s gonna have to happen quick.

Round 4 of attempting to finish this – this is just an example of how tired this stupid chemo makes me. This is my fourth attempt to finish this post. I fell asleep three different times. Even after I drank coffee This is why nothing gets done around here. I get all excited with plans, I get all the stuff out for whatever project I have planned, and then before I know it, I’m under a blanket, dreaming about being attacked by a vicious and violent kitten I am supposed to be pet-sitting. Needless to say, that did not improve my opinion of cats. But on a night like tonight, being warm in bed with many blankets is not such a bad thing. Of course, since Andy is out on the road somewhere with friends tonight after a hockey game, I am now awake because I am worried about his safety on this hellishly frigid night. I couldn’t fall asleep easily anyway, with this howling wind. My multiple layers of blankets on the windows isn’t even keeping the icy breeze off my adorable bald head. I don’t want to text him because I don’t want him checking his phone wherever he is driving considering there is little visibility with the blowing snow. I just hope he had the sense to stay put wherever he is. Motherhood. It’s like an itch you can’t get rid of.

Well, since I have failed at humor and don’t have much else to write about until after my Dr. visit on Monday, I’m just gonna put this lame excuse for a blog post out of its misery. But not until after I share this facebook post from a young man who was one of my students when I was teaching at Lebanon Valley College…it’s nice to read these things when I often wonder if I have made a difference in this world…and according to this, I apparently have:

Everyone please keep Diane Pietkiewicz in your thoughts, prayers, etc. I’m not one for religion, but I’m making an exception and praying to the big guy. Diane is the most memorable part of my Academic collegiate experience. Best professor ever. She consistently made me look at the big picture, taught me never to settle, and that the history of our nation is far from that which we’re taught in highschool lol. She is fighting a bullshit disease, and deserves all the support in the world!

And since Joe talks about praying, I just want to say this…all of you lovelies should know by now that I tend to follow Buddhist philosophy, rather than religion. I am not one for praying although I do chant daily but I do appreciate prayers, in whatever faith and form they come in, because I believe in the power of focused attention. For me, putting positive vibes and thoughts out in the world can’t do anything but good, so I am grateful for whatever words or thoughts you put into action. I spend time every day visualizing this damn puffercyst inside me shriveling up and dying. So pray on, or chant, or just think good things. As a matter of fact, I am really grateful for everything people have done/are doing for me while I endure this latest go with chemo – everything from offers to run things up from the netherworld of the office so I don’t have to, to sending me surprise packaged, to simply asking me how I am. And I apologize for not being as shiny and happy everyday as I have been in the past – I try, but as I’ve whined about, I am so tired all the time. In fact, today as I was rolling over in bed, I realized I would have made a damn fine bear. But not a polar bear, because apparently they don’t get to hibernate. But a grizzly. I would be a fine grizzly. I could be a panda too, but they aren’t really bears, and they also don’t hibernate – but they are pretty lazy, which if me right now.

And with that, I shall try get comfortable and warm in bed, while I wait to find out if my kid is safe. I tacked on the post I tried writing the other right at the end of this one – I promise to try and rein in my adult ADHD next time and stay awake from start to finish when next I write. So stay warm and dry my darlings. Bonne nuit.

BONUS READING:

(I started this on the 29th of January, or so)

On the first day after chemo, chemo gave to me…so far, nothing that I can’t really complain all that much. I ate some chili (not always nausea friendly, but I am not known for always making the wises decisions), had some tea and ginger beer, and some nuts. No fever, took a couple oxycodone and a zofran (super effective anti nausea drug) and I am drinking water like a camel ready to hit the desert. Of course, that means I am spending a lot of time running to the bathroom, but if it means I don’t get sick, I’ll do laps. Andy cut off his dreads today and then I buzzed the rest of his head, because he wanted to show his solidarity in the current situation. He was pissed that I buzzed the last of the zombie grinch or some other weird Dr. Seuss character hair without him, but I explained I couldn’t go out in public to chemo looking like that…I love making and wearing funny hats, but hats get hot pretty quickly inside, and frankly, I love my bald head. It’s a weird time of year to be bald because it’s freezing outside, so when I am in the cold, I need to wear a hat, but at home it comes right off, and now that I don’t look like I wondered out of a nuclear bomb blast, I won’t be wearing hats indoors at all except to make my doctors, nurses and small children laugh.

The day was long yesterday, my doctor was running late and then I found out my co-pay went up, and I got to chemo late. It was quiet on the infusion unit yesterday, but the day was fun since my friend and co-worker Heidi took a vacation day to drive me to chemo and hang out with me. We played the Chupacabra: Survive the Night Game which could be very fun in you add alcohol and make it a drinking game. Otherwise, playing to best three out of five is enough. But between the game, and conversation and people watching, the day went quickly. My nurse had a bit of hard time getting my IV started…she didn’t want to go with the vein I thought would be a good choice at first, so she tried my hand – no go. She then decided to try around where I thought would work, and hit one, but today it has a huge bruise, which doesn’t typically happen for me, so on my point scale of 1-10 where ten is I feel nothing and 1 is “oh my god are you doing this for the first time????”, she only gets a 4.8 downgraded from the 5.2 or 5.3 she got yesterday. I knew I’d have a bruise on my hand, but I didn’t think I would have on my inner arm. (as of February 14th, I still have remnants of this bruise) It doesn’t hurt, it just looks ugly. But the doctor did say that my blood work looked good and I looked good and let’s just see what happens by the 3 cycle to see if this thing shrinks, and that it’s important for me to just stop what I am doing when I get tired, and walk away from it. I know I don’t now, because when I am at work I don’t think like “I’m sick” and just do the work, and exhaust myself so I suppose I am just going to have to remind myself my body is in a fight, and I need to put it first. Alas, I also need to work to have health insurance and to pay the premium. I am very excited about my first paycheck since December tomorrow. I am going to do something crazy with all that cash…like pay rent.

And speaking of crazy, a couple weeks ago, there was a contest on the facebook group, Saving Money, Living Smart, that I belong to…at Christmas, there was wish list to put on the items that you wish you could get for Christmas, and I put down a Keurig. Well a couple weeks ago, the group owner asked a few of us if we got our Keurigs, and then had a second chance contest to nominate someone who we felt deserved it. Well I felt I did…I mean, especially today, the day after chemo, and then next week, when Andy is sleeping after work, and I am too sick to get out of bed myself and I want a cup of hot tea and can’t go get one and have to wake him up. I don’t know if anyone else entered me too, but I told my story about how I found out about the cancer two days before Christmas and blah blah blah, and today, the FedEx guy shows up and what? Whoa. I now have Keurig from Saving Money, Living Smart and the Keurig Company. How awesome is that? As soon as Andy gets up from his nap, I’ll have him take a picture of me and my Keurig…what a great surprise and what perfect timing. (Even though I bitched all the way down the steps about who was knocking on my door because don’t they know I am resting.) This is fabulous…I can’t wait to take it out of the box and check it out once I get a picture. I just need to get one of those reusable cups for my ginger honey tea. I am excited. (and that’s where I fell asleep that time)