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.
So, massive doses of vitamin B, medication, meditation, and writing kept me from sinking into the sucking abyss. You can all go back to poking me with sticks without fear of my mental breakdown again. It’s something you can’t even explain, but I will try to – it’s like waking up one morning and you just don’t even care that you have no money, and no gas, and there’s nowhere in walking distance that you want to go, and the house is a mess, and you have a stack of bills, but that’s all okay, because you’re fine with just hanging out at home, and it isn’t even depressing. Like that giant safe that was dropped on your soul from forty stories above has been pushed off and you can breathe again, and think of sad things without having a sobbing meltdown. You eat things other than chocolate and ice cream. You don’t really care that you aren’t chasing every dream you ever had, you’re just happy that you don’t have to fight to get out of bed, that you are back to considering a future, and the physical feeling of drowning under the weight of your tears is gone. Boom. Like that. Even though I don’t have the power to turn my depression on and off like a switch, some times it comes and goes like someone else has the power to control it. It’s not like anything changed in my life to make it better, it’s just I woke up on a perfectly gloomy day, continued to do the same mundane things I always do, but suddenly, it wasn’t like physical torture anymore. And I am grateful for everyday it gets to stay this way.
This is a good thing because two year check up is in two weeks. I do believe my baby alien re-inflated itself after the last tortuous surgery, or at least that is what I am hoping. Actually, I’m not hoping that it did, I am just hoping that that is all that is wrong, because something is, and rather than whining about it, I’ve been just patiently waiting for the next day of probing to address it. It’s not like waiting a month would really make a big difference anyway, but I’ve got pain and weird sensations going on in ground zero and I know something is up. I’m pretty sure I’m still cancer-free, but I think that the poking around at the chrysalis in my former uterine cavity did little to eliminate the problem and was just a stop-gap, and at some point it’s gonna be either me, or a qualified surgeon, going in there with a knife and cutting that shit out. And if it is cancer, well, not much I can do about that except treat it – it’s not like it’s flesh eating bacteria or a bot-fly larva erupting from my skin. See? I come out of the darkness, and I’m all like, who gives a fuck? For the record, Vitamin B is nasty, but clearly works. Or I believe it works, and thus I prove the placebo effect valid once again.
Hopefully you are all breathing a sigh of relief at my return to normalcy. Normalcy is relative though, and I’m still pondering the secrets of the universe and scheming great schemes. Andy has agreed to go to Riot Fest with his mother, and I am buying his ticket for his birthday. The last time we went on vacation together was when he was five and we went to Disneyland for a week for his birthday – Riot Fest will be much like that trip, except, I won’t be charged with child abuse if I smack him in the head for being whiny. In other words, he will fall asleep in the car, whine about being hungry, complain about the music I am listening too, wander away and want to go in the opposite direction of wherever I want to go. And like when we went to Warped Tour to see AM! and Pennywise, he will spend all his money, and come looking for me only when he is covered in mud and has lost his shoes and is hungry. Mother and son bonding at its finest. If you want to join us, let me know – I will be staying in a hotel – he wants to stay in a tent – or the car – or on the ground – and as he will ditch me to see the bands he wants to see once inside the gate I will technically be alone. We’re driving because I love a good road trip. You can get tickets on layaway, which is the only reason we can afford it – because the universe has some sort of issue with me having a bank account with any sort of substantial balance in it (grasshopper).
Well friends, it’s almost time to make something for dinner. Maybe if you are lucky, I will make something amazing and you will be treated to pictures of it on FB. Have a great rest of the weekend, and Happy Father’s Day to all the wonderful dads out there, including my “son” Corey, and my dad, if he’s ever allowed to return from where he is being held hostage at my brother’s home (detention camp) in Maryland, and to all the moms out there who are filling in as dads. And the men who are like dads to the dad-less. Fight the power!
It really didn’t. It was almost good.
Now, I know I had you all amped up for a wretched tale of drama, sorrow, and treachery about Christmas Eve with my family. I mean, I know I had a serious fear of what was coming and I should be used to it by now, but much to my pleasant surprise, it was pretty ok. It was not without some sniping, but all in all, there were no tears, no obnoxious drunkenness, and with the addition of my crab curry, food was pretty good.
And there was reconciliation. For which I was pretty glad. And for my new hot dog toaster. Because I didn’t know I needed one until I actually had one in my sights. That was my Christmas gift. Then we came home before things got too out of hand.
Andy and I were going to do mother/son bonding and decorate the tree together. So he went upstairs to check his phone and when I asked him to bring down the star and other box of decorations at 11:15PM, he said yes, and then next I saw him was 3:35AM. But whatever, I decorated most of the tree, and we had a tree up and Santa slung some things under it for Andy.
Christmas day was super quiet. No family but me and the boy, and he went out to a concert that night so it was just me. So yeah, sorry to let you down. The boy even made brownies. Which were more delicious than usual. And while it was a major plus for me, for you it sucks because there’s no humor in it.
But I do not want to disappoint completely, so here’s the story of last Dr. visit. You’ll laugh, you’ll cry, you’ll have sleepless nights. And all because – I went to see a new PCP. Because I guess I should have one. And I needed a flu shot. Because I like pain. Emotional, psychological and physical pain. Which I guess is the real reason I went to see a PCP in the first place.
As I skid into the parking lot, because I am sure that the appointment time that I forgot to write down and didn’t remember until last night, is 1:40P. Woot woot. I am only 5 minutes late. I get redirected to my pod area, and enter the bright cheery waiting room with fish decals all over the wall. You know, to make you feel you are in a fish tank, being stared at by strangers. Exposed on all sides. Kind of like how it will feel in the exam room. So perhaps this is subtle desensitization? Or maybe there are kids who need to see the Dr? Perhaps, but aside from me, it appears the waiting room is full of fake fish and very old people. Who may or may not see the fish. The receptionist/desk person reminds me of my Aunt Julie. She also lets me know that my appointment is not until 2. I can resume breathing – well, shall we say, stop breathing so heavily? Because I am, from run-walking to the office. She does not appear to be thrilled with working, but she does it none the less. I am afraid to touch anything and eager to get back to my hand sanitizer. It’s not that the office appears unsanitary. It’s very clean, even the wall fish. But you know how old people are, what with germs and all.
I fill out a questionnaire. You know the usual, the-whole-write-your-whole-life-down-on-this paper-that no-one-will-really-look-at. They will ask you the questions when you see them in person and no matter what you wrote down, they will not even look at the paper. I want to write down hallucinations, tail, third eye, delusions, inappropriate laughter and elephantiasis as my presenting symptoms. Arsenic poisoning. Viper bite. Whatever, you are still gonna ask me what’s wrong no matter what I put down.
The summons comes. I go merrily to the scale. I get measured. It says I am an inch shorter than I was last year, and now two inches shorter than I was two years ago. I believe it is wrong. I get weighed. Verdict? FAT. Yep. Just write that down. FAT. Or REALLY FAT. FATTER THAN LAST TIME. It really doesn’t matter at this point. It won’t be going down anytime soon, maybe by the next appointment, but with cookies, ham and candy on the horizon for the holiday, it isn’t gonna be in the next few days. So yeah, write that down and let’s move on. On to the exam room.
I don’t have to undress. There will be no prodding. Hurray! Why am I here? Well, I quip, Ebola or black death, some sort of plague, not really sure. No, really, just to establish a PCP. I will one day have to part ways with my gynecological oncologist, and radiation oncologist, and endocrinologist and treatment team, so you’ll be stuck with me. Some day, I will need someone to just give me a Z-pak instead of irradiate or poison me. And that is what brings me here today. And flu shot. I need to lose the use of one of my arms for a few days in the name of not getting sick. Then the litany of questions. I answer them all appropriately. Then temp and blood pressure. Blood pressure’s a little high. Okay, more than just a little BUT I was rushing around, I’m stressed about work, I ate a bag of chips on the way in, drank a cup of coffee and rushed in here after speeding down here so I wouldn’t be late and then you weighed me and I discovered that I’m STILL FAT, and you want me to be calm? Let me meditate for five minutes, and we’ll be normal again. Okay, fine. Send the Dr. in.
I wait. Not long, For in enters Dr. Doogie Howser’s younger sister, Doogette Howser. My new Dr. (If you have been reading my blog for a while, you’ll recall my encounter w/ Dr. Doogie Howser, the young anesthesiologist who discovered my non-existent heart murmur before the gutting – I did not know he had a sister) Dr. Doogette seems nice. She pops open her laptop and starts to ask me questions. You know, the questions on the paper, and the questions I just answered for the nurse. She seems nervous. I am absolutely positive my electronic chart says this patient has no uterus, I think I wrote down hysterectomy, cancer, etc. etc. on my paper and told that to the nurse who I watched type it into the magic chart, JUST A FEW MINUTES AGO. Wanna guess what the next question was? Go ahead. Give it a shot. It’s my favorite question, the one I get asked when no one reads my chart. Give up? Already? Okay, here goes : When was your last period? What is regular? HELOOOOO, no girlie parts, no period. Even if you were really asking the date, I think the fact that I was opened like a giant pumpkin and carved for the entertainment of a surgical team and had all the parts that once had seeds taken out and put in little jars or plastic bags or Tupperware for further dissection kind of says that that last period probably wasn’t normal. Really? You just asked me that? Um, hello, two years ago, GUTTED. No female apparatus, no uterus to shed a lining. Move on.
Next question. Do you know you are FAT? Why, yes, I’ve noticed. Would you like to change that? Why, yes, I believe I would. What three small changes could you make to your lifestyle to start changing that? The answer I want to give is Ritalin, Vyvanse, Adipex. But I think she means stop eating ice cream for dinner. Let me interject here and say, I know everything I need to know about losing weight and getting healthy – I am capable. Right now, I have an emotional attachment to my blubber layer and until I feel I don’t need it, I am not going to let it go. But sure, I’ll play along. I think I will give up lattes. And eat breakfast, I’ll do that. We spend an inordinate amount of time talking about my diet. I know it sucks, how about we give me that flu shot, and let me get to Hardee’s for some onion rings?
Now we’ll talk about the blood pressure. It seems high to her. I know, I usually run a little high. This is not as high as I have seen it. If you take it again, I am sure it will have gone down. It’s not usually this high. But Dr. D. says, it was this high in July 2013. Yes, I say, it was – that was the day it was taken by the furiously mean auto-blood-pressure machine in radiation oncology. It is a torture device. Just being near it makes my blood pressure high. They took it later and it was fine, but of course, that’s not in the chart. Hey, wait a second, the only reason you knew that was because you looked at my chart. So wait, you know what my blood pressure was in July, but you don’t notice that a huge clump of my internal organs were unceremoniously removed? Um, ok.
Dr. D. excuses herself. She will go confer with the attending. I think my diagnosis is fat. She vanishes. After a while, okay, 40 minutes, the nurse comes back to stab me with the needle. She then retakes my blood pressure. It’s 20 points lower. She assures me Dr. Doogette will be right back to me. 30 minutes later, she’s back. With the attending. The attending introduces herself and tells me Dr. D will be discussing my weight and blood pressure with me. Then she leaves. Dr. D now turns to me and says, well we talked about diet, you will get some blood work and we will now put you on high blood pressure meds.
No, no we will not, Dr. D. No more meds today. You met me one time. I have no other symptoms of hypertension. Oh, swollen ankles? It’s 4 pm. I ate chips. I have been driving all day and then sitting in here for almost 2 hours. No, you do not get to say that I certifiably have high blood pressure after meeting me one time. I am not questioning your diagnostic ability, I just believe that before you have me swallowing another set of pills each day, you see me at least a second time. I have as much access to my medical chart as you do, and I have seen a Dr at least every 3 months for the last two years. In fact, I’ve seen them sometimes as much as twice a week. I think if they were not concerned and they see me that often, maybe we should see how this plays out in a month. So go back and tell the attending I said no.
She does. They will agree if I agree to check my blood pressure every day. Of course I will. Sure. First thing. And I’m lying, but hey, if you feel better, you can believe that. I’ll come back in a month, we’ll have this conversation again then. In the mean time, I’ve got a few weeks to meditate and get it where it should be. And you have time to read my chart. All of it. I have to do a survey for Dr. Doogette. I like her, she is nice and answered all my questions. There is no spot to guess her age. I say 15. All I know is that I wanted to give her a sticker that says “good job” on my way out. And maybe a note to her mother on her performance today.
I go back in January. So please, hang on every day between now and then, until I can write the sequel. I have a mammogram that same day, so we’re talking good times. Nothing like a good boob smash and interrogation to end the week on. I go back to work on Monday. Then my excessive blogging should end because I’ll be too tired at the end of the day to do anything besides fall asleep with the lap top on my lap. Thanks for traveling with me today blogsketeers. But now, stuffed with cookies and curry, I must sleep. If you want to see the pictures from Christmas, they are on my facebook page. Bon Soir.