welcome to the danger zone

Posts tagged “alcohol

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.

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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!


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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Magical Mystical MRI (or The Time I Got “Blue in the Face” Instead of “Trying to Breathe”)

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Let me begin with this: I am not going to be making a resolution involving vodka and orange juice, because I decided that my relaxation cocktail is just that: pineapple, orange, and veggie juice with coconut vodka. It’s mighty tasty. I am having a lot of anxiety this evening (as will be discussed in the next paragraph) and I am trying to chill because I need to be bright eyed and bushy tailed for my Dr appointment tomorrow. I know I gained a little weight. I am not sure how, but I feel fluffier. I’m not stressing about that, because in three days, I’ll be so sick that food will be my enemy once again and the only thing I’ll want to eat are my go-to foods: pineapple juice, english muffin, oatmeal, yogurt and ginger beer. I want to make a pork roast tomorrow for dinner but I am afraid if I eat my friend, the pig, before chemo, I will lose my love for the other white meat the way I have lost my taste for artichokes and parmesan cheese the last time. And if I can’t eat bacon, what’s the point of living? Right now I am trying to coordinate with my brothers to get me to chemo and back because Andy is afflicted with the winter death plague, and I cannot be trapped in a car breathing his germs for an hour while we drive to Hershey. As it is, he is forbidden to be within six feet of me. And if he gets close, I pelt him with a hand sanitizer. So right now, it’s looking like I will be arriving two hours early for my appointment, and then waiting an hour or two for a ride home after we’re done. It’s gonna be a long, long, long day. But when in my life has anything been simple or easy. Enough stressing about what hasn’t happened yet, we have to review today’s adventure.

Let me preface this with this: the internet is a dangerous tool. Useful, but dangerous. Damn Penn State Hershey didn’t put my MRI results in my “My Health” account like they do with with my CT scans. How am I supposed to make myself anxious all night before my appointment if I don’t read them like I read my CT scan reports? Hmm? How can I prepare for the worst if I don’t have the info? I, of course, interrogated the nice young technician who did my MRI as to what she saw. She confirmed that there is indeed something in there, but I knew that – when I asked her if I should be prepared for an unpleasant surprise at my visit tomorrow, she would not commit. That typically means yes, I should be, because when they don’t put your fears to rest immediately, they are trying to find a way to avoid a straight answer. So we shall see. But again, I can’t worry about that until tomorrow. That is the point of the relaxation cocktail.

Well it was a lovely ride to Hershey. The fog was thick and murky on the interstate, as I tend to like it. It feels like driving in a thick cloud. I forgot it was a travel day and that Canadians would be in our country and on our roads, making driving difficult, which can also be said of New Yorkers, and also those from New Jersey. They should just stay home and enjoy their holidays in their own country/state. I had to stop and get something to eat because I was feeling nauseous, so I also took a percocet because it’s hard to tell if I am feeling sick from not eating or withdrawal, so I addressed both. I tossed back my chocolate milk and rolled into the parking lot at The Cancer Institute, realizing I would need to pick up my parking pass tomorrow for this lot for my treatments. I scurried into the building, looking like I rolled out of bed and fell into the door because I was trying to dress in things with no metal so I wouldn’t have to change into a gown. Nope, that didn’t work. I soon realized I had to go in the main entrance, and I meandered down to the radiology department, the same place that had tried to empty the cyst for the last year. I was the only one there, so I was personally escorted to the MRI room. I filled out my questionnaire about all of my surgeries and tests and radiations and chemos and skin pokings and jabbings and big giant incisions and medications and answered some math word problems about trains and wrote a short essay on what I did on my winter holiday. I signed releases I didn’t read. Then I was escorted to the changing area. It was pretty much the same deal as going through radiation, except there are no animal themed changing rooms and no waiting corral. I did get a locker for my stuff, and I actually had two gowns that covered me, instead of feeling like I always had to close some area that was exposing skin.

In typical fashion, I needed to repeat my name and birth date about 3,129 times. I had to show them my tattoos – MRI tip – an MRI will cause certain inks in tattoos to swell/itch because some inks have metal particles in them, particularly bright, vibrant colors. It’s not the best idea to get a tattoo right before you get an MRI. The technician asked me if I wanted some music during the procedure, and I said sure, but you probably have nothing I listen to – and to my surprise, she said give me the names and I will use Pandora. So I rattled off some of my faves: OWTH, Against Me!, The Go Set, Pennywise, Alkaline Trio, excited that I wasn’t going to be forced to endure One Direction, or Creed, or worse, Nickelback,

We entered the MRI room and to my surprise, the MRI machine is not so different from a CT scanner. However, there is the obvious lack of decorative stickers. I pointed this out immediately, and suggested some Brave, or Jungle Book, but no Toy Story 3, because I am still traumatized from that one. The tech said she’d check but they probably cant because of the risk of metallic particles.

Curiously enough, the room itself has a background hum that sounds like the womb sounds that my Sleep Sheep makes, which would have been soothing if not for their loudness. Unlike the CT meat slicing machine, the MRI tunnel is entered feet first. I had to get an IV started because there would be contrast dye for this one. They put some boards and blankets on my belly, and start the IV, which actually hurts at first. I told her to choose my right arm, because I was saving the left for chemo on Tuesday. Chemo tip – always go for the left arm. You will get a lot of fluids and will spend an inordinate amount of time in the bathroom – you want that right arm unencumbered. We got the IV issue worked out and that arm got strapped down. I was given a emergency call bell in case I started to freak out for the other hand. Then they put my headphones on, and I get launched into the tube. It’s a pretty small space, and I am a pretty fluffy girl. I had wiggle room but not much. The music started to play, and amusingly, the first song is an Alkaline Trio song, Blue in the Face, which ends with the line, your coffin or mine? I found this so amusing but being that I had to remain still I was not allowed to chuckle. The MRI imaging is done in time limited sessions. 45 seconds, 1.5 minutes, and then 2, 4, 5, 6, and (2) 8 minutes. Then the dye is injected, and you do 2 more 2 minute and 4 minutes sessions, and then (4) 18 second images images holding your breath. The instructions to hold your breath are supposed to come through the headphones – the tech broke into the music to tell me to follow along, except the instructions were in spanish, and she then had to just tell me what to do each time.

The actual imaging sessions are noisy. I was doing okay though, because I had music. Curiously, even though I had given her the names of the bands for Pandora, I got mostly Alkaline Trio and the Menzingers, and no OWTH for the first session – there was some Taking Back Sunday and some AFI – but no OWTH or Against Me!. This was tolerable initially, and I shouldn’t complain, because it could have been worse, like noted above, Nickelback, or even, ~shudder~ Macklemore or Pitbull. When the tech came in to start the dye, I asked her to restart Pandora with OWTH and the other requested bands – I got one OWTH song, and then it went right back to the Menzingers – weirdest thing ever, I wonder why that is? Anyway, the last sessions were the most difficult to stay still during because the machine was literally rattling. And your body gets really hot. Like it’s cooking. But I did really well keeping still, I turned on my meditative brains and pretended that I was a corpse. Of course, then runaway brain came along and I started to think about what it would be like to be buried alive, and this is as close as I hope to ever come to it. Then I started to think about all the poor people who were buried alive and what that must have been like to wake up in a box underground and be trying to claw your way out, and then the terrible realization that this is it, and you are trapped and never getting out. I then realized that I need to modify my living will to specifically state that under no circumstance whatsoever am I to be buried, or placed in any boxes unless my heart has been removed from my body or my head severed. That freaked me out. I realized then that the only suitable way to die would be drowning and then eaten by fish. Fear of being buried alive moved to my number 2 fear. Clowns were downgraded. Fire is still at the top. Again, drowning would be the only acceptable way to go.

Returning to our discussion track, there’s a lot of noise during an MRI. Banging and whirring and swishing and thunking. I did okay with most of it, the music minimized it but it still all seems to be going on by your ears, instead of where they are taking pictures. At one point it felt like the hair on my legs was being magnetized Totally bizarre feeling. It’s not constant. It starts and stops, and they tell you through the headphones when the next imaging will start and how long it will last. I only got caught off guard once with the loud banging, and fortunately, since you are in a restricted space, you can’t really jump out of your skin. I kept referring to my meditation practice and controlled my breathing the best I could, trying to relax. This is an important tip for those having an MRI. Work on your breathing. When it was all said and done, and I got to sit up, my whole body was stiff from staying still for so long. Even though the actual imaging session are short, the whole process lasted about 1.5 hours. Keeping still is a lot more work than you would think it is. As I mentioned, I asked the tech what she saw, but I also asked her why they do MRIs on a Sunday. She said they have to staff the MRI 24/7, and since someone has to be there all the time, they decided to make use of those hours by scheduling outpatient scans so they use the time effectively. There are a lot of emergency and rush procedures during the week, and it’s really stressful. Weekends are more laid back, there’s no tension and it can accommodate both staff who want to work only weekends and patients who need an urgent but not immediate scan, or people who can’t take time during the week. My tech said she actually prefers being there and doing procedures on the weekend. I have to say, it is a much more pleasant experience for the patient too because you aren’t jammed into a room of sick people to wait and you don’t feel rushed and everyone seems more calm and relaxed. There’s also better parking and fewer people in the buildings. After I regained my sense of stability, I was given my key to my locker and changed into my clothes and then scurried (IE. Walked slowly and stiffly) to reward myself with a chestnut praline latte at the hospital’s Starbucks. Twas yummy.

I took a longer scenic route back home – I had planned on going to dinner with my sharksister, Ashley, but she came down with the flu or plague or west nile last night, and we had to cancel. I was disappointed because I was really looking forward to seeing her, but we’ll have time, I have 4 months of appointments yet. We were going to go to Pho Miss Saigon in Hershey – a super yummy pho/noodle house – I still don’t have much of an appetite, but I was looking forward to Vietnamese iced coffee, which is my most favorite. If you frequent the Hershey area, I highly recommend the spot, particularly if you like pho or noodle dishes. It was still quite foggy as I headed home and was dark, so more stupid people than usual were about to hinder my ride home. Tomorrow is doctor and blood work day, and laundry. Weirdly, I need to make sure that I have a fresh blanket and sheets on my bed for after chemo – because of the whole weird smells thing, I need to have things as fresh as possible the first few days. Andy is also going to need to clean the car and quit smoking in it, because the odor of cigarettes is the one scent that makes me want to immediately hurl once I start chemo. At least I know what to expect. I also don’t have to have the nasty neulasta shot, at least not initially, so that’s a huge plus. That shit is the worst part in my opinion – the pain in your bones is as horrible as the pufferfish. I’ll have to get a picture tomorrow while I still have my hair…I figure it will be gone by the beginning of February I’ve started work on a fox hat, and I have patterns for a raccoon, panda and queen crown.

So that was the MRI. To summarize, much like being buried alive but without the bugs or dirt or paralyzing fear. Also much noisier. Not for the claustrophobic. In other news, I facebook blasted that my cancer is back – it may seem like an attempt to get attention to some, or putting “my business out there” but you know what, I don’t really care. People are naturally inquisitive – they want to know – and I don’t think this is something I need to keep private. It’s scary and people are curious. If I make it easier for someone else, all the better. With that ma petites, I shall leave you for today. I’m gonna finish my cocktail, and tuck myself in. Hopefully I’ll have more details tomorrow. Sweetest dreams my friends, and like I said on facebook, send me your good vibes, positive thoughts, prayers, animal sacrifices or good juju, I can feel it and it helps.

And don’t be afraid to ask me questions – it doesn’t bother me a bit.


Patience My Pretties, I’ll Be Back.

Never fear, I haven’t abandoned you. I have tales to tell – it’s just been a bit of celebration and whirlwind of things happening since the pufferfish was deflated again and I was enjoying the last six painless weeks, with nary the need for pain medication. That said, I’m a tad down at the moment, and needed to write the following, and though I thought I’d keep it private, hell, why not share, I mean, you’re already familiar with my former uterus.

Stay with me dear ones, I will be back to keep you spellbound with happier tales than what follows. But today, I am sad.

Joey,

I can’t remember the last time I wrote you one of these letters that I couldn’t send if I wanted to, but the sadness that lingers at the end of summer when the days are perfect but growing shorter reminds me of you. And it may be coincidence, but I keep seeing things that remind me you’re gone but still hanging around, if that makes any sense at all. I miss you. I miss having one person who knew the darkest side of me and one person who understood my innocent joy. I think of what it must have been like in the last moments you were here and if you knew you were about to leave or if you made that choice. Everything changed when you were gone.

It doesn’t seem like there’s a day here when I don’t think about you. And in my mind’s eye, we’re 20-somethings with not a care in the world, scheming, and whether we’d seen each other the day before or months apart, the world was ours when we were together. And in my mind’s eye, I remember every detail of the day it crashed around me.

I wish I could mail this letter to you like I did so many others – tear stained, or gleeful, excited, full of wonder, sharing every detail of my broken hearts and plans for the future – fat envelopes, stuffed and sticker-covered and keeping me connected to you despite thousands of mile and minutes. Stories of new adventures and days I wanted to close my eyes and have it all be over.

I know it’s a matter of time until we find our paths crossing again. I thought it could be in this lifetime, but probably the next. Just know I’ve never forgotten you my friend. And I am still mad you left me, but I understand that it was time for you to go. I just wish I could have one more hour to put my head on your shoulder and cry until you were covered in snot and slobber, and have you take the hurt away for little while. Fucker.

Me


motherhood doesn’t have an expiration date.

I doubt I’ll be sleeping anytime soon, so I might as well write. It always amazes me the way things happen and what they teach you. A few weeks ago, I thought life was going pretty smooth – I thought well maybe this is where things normal out, maybe I am finally getting to status quo and maybe I can sort out the mass destruction that is my home. I thought wow, I don’t have any massive trauma in my life that is fueled by drama. For one millisecond, I regretted the relative quiet.

Then shit fell apart. Andy had an accident. We scramble for a rental. I have no money, again. We run out of oil in the middle of one of the coldest nights of the year. The cable, landline, and internet get turned off. The cell phones are perilously close to the same fate. I have car insurance to pay. There’s snow everywhere. Life seems familiarly dramatic. My mood is stable, I’ve got my effexor, vodka for relaxing and chocolate. I can deal, like usual. Like usual, I take it in stride.

The next part of this is brutally honest. It is truly painful. And I can’t believe that I am going to post this shit and let people read it. But like the last time it happened, if it makes a difference for one other person, I’m okay with it. So here goes – about 9:30p, the front door opens, and Andy is home. Not that unusual, because Amazon gets slow this time of year, and he gets voluntary time off. He comes in and heads straight to the bathroom. I’m watching Best Ink, and not really paying attention, but then I realize he has been in there for an hour. And there’s no sound. So I go knock on the door. No answer. I pound. No answer. I yell. No Answer. Then I try the door. I can’t get it open. He is dead weight in front of the door and not responding. Adrenalin kicks in and I push it open a few inches and all that goes through my head is: overdose. He’s dead. My son’s dead. I push hard and he starts to move. He’s not making sense and I finally get through enough to see him. He’s been passed out on the floor, half dressed, vomit all over the bathroom, and he’s incoherent. He can’t fucking see straight and he’s asking me why I am freaking out. Dread is overtaken by a cacophony of emotions: rage, sadness, fear, bewilderment, and sorrow. I finally think I understand shock. I make him get up off the floor. He’s got puke on him and he reeks of whiskey. I am terrified he’s taken something. He tells me he’s fine, and to stop freaking out, and by this time I’m on my knees sobbing in relief and anger, just repeating ohmygod, over and over. It was like seeing myself doing it. He did it again. He not only got wasted to the point of unconsciousness, but he drove 20 miles home on a windy road after drinking, and who knows what else? And you want to know why I favor marijuana legalization? Because I would never have to worry about my kid smoking too much pot and choking from vomit in an unconscious state. I regain enough sense to make sure the car isn’t crashed into something or someone. I tell him to clean up the puke and get a shower, and just keep crying. Sobbing really. I tell him to get in shower. He doesn’t even know where he is at.

Eventually he semi-cleans up the puke and gets a shower. Then he tries to go to bed upstairs. I’m terrified he is on something else, but he swears he was just drinking. I am terrified to let him sleep and at the same time I just wish he would go lie down so he stops trying to tell me I am overreacting. He doesn’t get that I just thought he was dead on the floor, because it was just every overdose scene you’ve ever seen in any movie. Sid and Nancy, Less Than Zero. Okay, I’m showing my age, but you get it. I beg him to sleep downstairs on the couch because I know I won’t sleep until I know he is still breathing, and I can easily check on him. I am still terrified. I am afraid he’s lying about just drinking. I wish I didn’t feel that way. I wish I could just chuck it off to youthful indiscretion. I wish. I know what my youth was like. But being a mom changes all that. I thought I lost the only really good thing in my life. And when faced with that, the only thing you can feel is that your world has just ended.

And then I sat here. And I just wanted to talk to someone. And that’s when everything got worse. I realized there is no one I feel comfortable enough waking up in the middle of the night to listen to me cry about how I thought I lost my son. Sure, I have plenty of friends I will tell tomorrow, but at 11:30p I couldn’t think of anyone. So here I am. Looking at all the yarn I got out to ask him what colors he wanted me to use to make the new hat he asked me to make him yesterday. Wondering what I did wrong that he’s done this not just once, but twice, and just grateful he’s not dead. My heart is still pounding in my chest, my face is scratched from wiping my tears with paper towels and I am terrified to actually go into the bathroom to see what a mess he left behind. And crying. I can’t stop crying.

So yeah, if you are one of my younger friends, think about it before you drink til you puke. Somebody might not be around to check on you when you are passed out on your bathroom floor. And for my other friends, I hope you never have to deal with what I just did. I thought it would get easier when they grow up. It doesn’t. 22 years later, it’s sometimes harder than ever.