I actually got ready early this morning, because we had several things to do be we left for my appointment at Hershey – which included going to vote with Andy and having a discussion about voter suppression, since once again, illegally, the polling place had a sign that said new voters had to show ID. I don’t know whether it’s blatant disregard that that no law was ever passed, or just ignorance developed from watching too much Fox News. Whatever. Not to mention that the polling place door is always surrounded by people campaigning for local candidates, making it somewhat intimidating to enter without being assaulted. But enter we did, and refused all the little cards the lurkers tried to force upon us to help up select our candidates. Really, if you don’t know who you are voting for and why when you get to the polls, you shouldn’t be voting at all, because you are clearly uninformed. I hate the way small town voting always seems shady, but our votes were cast and we received our stickers, which is my favorite part of voting.
After voting, we then had to hit the pharmacy because I was not going anywhere near that hospital today without being armed with a full prescription of pain meds. I wish I had had something for anxiety, because while the pain of the last tube procedure was just a memory for my brain, my body was fully remembering the trauma of the last visit, and on high stress alert. Not to mention that I couldn’t eat or drink anything for several hours before this stabbing, and I was nauseated by the Tamoxifen and shaky from not eating or drinking. My brain kept trying to deny that this time would be as painful as last, but my body was having none of that. Being sedated last time when I was leaving the Vascular Radiology department, I could only remember it was down the hall from Interventional Radiology, and wandered around lost in the bowels of the hospital trying to find it. I did find my friend Joanne, who works at PSHMC, and we then wandered together until I found it. I checked in and went to the waiting cell. As is typical at PSHMC, Fox News was on. I was doing okay until they started interviewing Donald Trump, and he began spewing outright lies, and no one even challenged him. At that point, I went and stood in the hall, because Tamoxifen raises my blood pressure and that asshole was making it worse. Not to mention all the crazy supporters in the waiting area who find him appealing as a candidate. And lest I forget, the man who spent his time reading his magazines aloud, then also audibly commenting on the articles he just read. I could feel my blood pressure soaring.
Finally I was beckoned to the dungeon, er, staging area. IV insertion did not go smoothly, and my very sweet nurse called for a vein whisperer after her first two attempts did not go as planned. My left hand is now going to be a large bruise. The second nurse got the IV started in my right hand after a few harrowing minutes when it looked like that vein was going to blow too. Settled onto my bed, I actually had a pillow this time instead of a fold-up blanket like last time. I tried to lie down, but I wanted to puke, so I asked the nurse to help me sit up so I wasn’t choking. She offered me Zofran, I wanted my herbal medication, and declined, and said I would deal with it when I got home. She said, oh do you drink ginger ale and I giggled and said, yes, but I also smoke marijuana. She nodded her approval. The Dr. then came out and told me that they had discussed my tube at their morning meeting and agreed that if they ran dye through my tube and it made it to my bladder, they would pull that sucker out. I agreed completely – then found out that since that was the plan, there’s be no sedation, no pain meds and no need for the IV so carefully stuck into my hand. However they left it in, and wheeled me into the procedure room, where in 15 minutes, my 13 weeks of torment were over. It was almost painless, but not really. I couldn’t wait to get a drink and some oxy to ward off any impending pain. I was wheeled back to my waiting space and released. Now to find Andy and my mango smoothie.
Andy and I hit the road after finding each other, and headed home. I drank my smoothie and ate my pills and was still cranky because I needed to eat. I wanted wings, but the wing place didn’t have any interesting flavors, so I settled for a jr. bacon cheeseburger, and some nuggets from Wendy’s. After my angry, hungry beast was fed, things were much better. We got home without any serious pain like last time. My little friend Erin was there to great me when I got home, and after a couple minutes of chatting with her, I headed to the tower, more pills, my medicine pipe, some advil and water. Having adequately medicated, I tried to sleep. Then the pain came. I guess I didn’t take my meds at the right time to prevent the last dose from wearing off completely, and just like last time, I couldn’t move my right side for without screeching pain with every movement. It’s since toned down a little, but that’s the main reason I am blogging tonight, because I need to get another dose in before I go to bed, so that I don’t wake up crying. My kidney spasms every now and then like it’s pushing small pieces of glass through it, and that my friends, is horrific. It lasts less than a minute, but it jolts me awake. Hopefully by tomorrow morning it will be tolerable.
The pain however was what got me thinking about blogging tonight was, because I don’t know if this happens for other people, but it does for me, when I am in pain I tend to hum, and then I hear songs in my head that are relevant to my situation. For instance, the song of the evening that is replaying in my head is Off With Their Heads’ Trying to Breathe. It’s my way of self-soothing I suppose. But I seem to have certain soundtracks to my life – like last month, I often heard one of U2’s earlier songs, October, over and over in my head. November is the month of the Jesus and Mary Chain because Joey’s birthday and the day he died are both this month, and the JMC is what reminds me of our friendship. And when the depression hits, I often turn to the Smiths and Elliott Smith to highlight my misery. When I was first diagnosed with cancer and I had to make the 4:30am drive back and forth to Hershey, I listened to OWTH’s In Desolation, to and from, every day…it got me through those six weeks and far beyond. OWTH is still one of my go-to bands for catharsis, and that’s the reason I try to see them as often as I can because there’s a sense of belonging among that crowd that I am not alone in my pain, fear, and frustration. It’s healing and cleansing. In fact, if you were to ask me about specific times in my life, there would be an album or a band that I would identify it with. R.E.M got me through being dumped during my pregnancy. I made mix CDs (and now playlists) of songs for seasons – there were summer songs, and loneliness songs, and dark brooding goth mixes with Black Tape for A Blue Girl. Some people enjoy music – my music gets me through the hard times, helping me put to words what I am feeling inside, and scream it out loud on winding back roads, helping me heal. There’s even driving music, which I have to be careful with because it seems to enhance my leadfoot. Then there were the new bands I discovered and would listen to when I first got to California and had to take the 2.5 bus ride to and from work every day – Husker Du, the Replacements and the Hoodoo Gurus to name a few. And Echo and The Bunnymen’s Songs to Learn and Sing. Andy’s first show was the very first Lollapalooza when I was 8 months pregnant. Most of my friends are clueless about the bands I listen to and love, but without my music, I’d be lost. It’s not just music, it’s my way to cope. Especially while I have been dealing with this C-monster that has me in its clutches. When I got the last prognosis, I spent hours driving and crying and singing my throat raw before I could pull it together to come home. I listen to classical when I need to focus; I listen to weird rhythmic pieces by Gabrielle Roth when I need to stretch, and I had playlists for the gym when I still had the strength to go. There was music for strength training and music for the elipti-hell machine. And there are songs that I will listen to on repeat until every ounce of pain has been expunged. And while I find peace in the bands I discover and love, there’s also music that makes my ears bleed – and gets under my skin like a festering splinter that I can’t wait to be rid of. Like when we went on the dinner cruise in DC, and the music they played on the observation deck made me want to leap into the Potomac or shoot out the speakers, or both – music can indeed make me miserable. Or it can make me laugh, like the song Bunnies by Pansy Division. (Go ahead and download that one) And for those who received them as holiday gifts – there are my impressive holiday songs collection, which have had some gems on them. It’s not just music, it’s part of who I am.
Music was the reason I was willing to put off chemo for two months so I could go to shows and festivals and see the bands I love. And while I made it the shows that mattered most to me, we all know how difficult the kidneys and bladder made following through on a lot of that was. In fact, going to shows made me fight a little harder to stay healthy so I could go. And it gives me a connection with Andy, that we enjoy a lot of the same music gives us something we can do together. In fact, my Christmas present is going to Chicago for the War On Christmas shows in December. Part of my “things I still need to do list” includes seeing bands I’ve always wanted to see live, which is a pretty short list these days, but there are still a few I haven’t seen.
Well now that I spilled all of that out there, it’s time for another round of pills. I’m still having pain, but it’s getting better – I will probably need my dressing changed in the morning – the doctor said that my kidney will seal itself, but there may be some discharge for a few days. I am allowed to swim and take baths again – they said 2 days, but I’ll wait a little longer, like when the hole is actually closed, and I don’t need a bandage on my back. It’s really the tape tugging at my skin that causes the most pain – there are scars around my back where the tape tore away my skin just like it did on my thigh. And it itches. But it’s almost completely over and I am so thrilled that I can’t even stand it. I rolled around on the bed just for fun, because nothing was tugging and pulling at my skin and kidney for the first time in over two months. I could literally feel the stress slide off after I got in the car to come home. I can deal with cancer, and I know at some point these things might have to be a part of my life n the months to come, but they don’t need to be here now. I just want to be able to do things and go places now while I can, without these encumbrances. Not that I minded taking the punk rock stroller to the shows, but I’d much rather be free of the attachments. No, that’s a lie, I did mind taking it, but a girl’s gotta do what a girl’s gotta do.
So now that my pain pills are slowly making their way into my bloodstream, I am ready to head to bed so that I can get up and get things done tomorrow, at least some laundry and maybe making dinner. We’ve been eating a lot of fast food, food other people have so kindly made for us, and frozen food. I haven’t had the energy to cook, but I’m hungry for jerk chicken and mashed potatoes and corn, and I know Andy would be grateful for his mother’s cooking again. The ladies arrive from CA here in Shenandoah on Friday, and Saturday morning we are going to Shady Maple for breakfast (and for the gift shop so I can get a new toy). I am so excited to see them all and spend time with them. And I am very thrilled to see all my other friend at the benefit on Saturday, and to score some of the good food that will be there, especially the stuff Lisa’s making, because that woman can cook. Best breaded chicken ever. My only hope is that my dad doesn’t over do the wine and drag up every less that optimal decision I ever made in my life. Presently, he’s blaming my circumstances on moving to FL with my much older alcoholic and drug addicted boyfriend when I was 17. That’s a long time and a lot of therapy ago. But that’s my dad. It’s still going to be a good time.
Before I forget, I did get my panda suit. It was very hot. I sat on the porch for over an hour waving at cars, but only 4 people total ever waved back. I scared Andy, Eric and two other people walking by. People showed the panda no love. If I saw a giant panda just sitting and waving on a porch, I would have stopped the car for pictures. Then I let Andy borrow the costume for a show he was going to. The panda body no longer exists any more because he was far too tall for it, and it showed. However, panda’s head is just fine, so I’ll just toss on my new security blanket, my OWTH hoodie, and sit on the porch as punk rock panda, and see if that makes a difference. Now it’s time for bed, and more water because we have to keep the kidney in good shape. Sweetest of dreams, I’ll probably be back after everyone returns to the West coast with pictures and stories to tell. Enjoy these last few warm days. And remember to give lots of hugs and tell people you love them every chance you get. You can’t do either enough. And sorry for the rambling, it’s the medication, I swear.
4 November 15 | Categories: c-monster, Philosophizings, Profound Insights, Random Rambling, Soapbox | Tags: annoyances, benefit, cancer, cyst, depression, doctors, endometrial cancer, flying monkeys, food, fun, happy, malignancy, mass, music, Off With Their Heads, pufferfish, side effects, surgery | Leave a comment
Yeah, it was that kind of day. The kind of day you won’t forget and you hope will never come again. It’s still all very surreal, even though I have a folder with hard copies of all that went on and I can sign into the computer and see with my own eyes what I don’t really want to know. Stupid internet. S tupid body. Stupid cancer. You all suck.
I actually was early for my appointment today, even though I didn’t get out of the house as planned this morning. I skipped a coffee because I didn’t want to jack up my blood pressure which I anticipated as already being high due to anxiety. Surprisingly, blood pressure was perfectly normal. Better than ever, and I didn’t even take any pain meds this morning And I only gained a pound and a half in two weeks, which must have mostly come about last night when I was stuffing chocolate into my mouth with pretzels in order to create chocolate covered pretzels and then stuffing more feelings with a bag of sweet potato tortilla chips Yes, I wasn’t really hungry, yes, it made me sick, but the food just kept being shoved into my chomping jaws. Just like after my doctor’s appointment today when I tried to quell my emotional upheaval with taco bell and a banana milkshake at Sonic. As if it matters what I ate today, because tomorrow is chemo and I won’t want food for at least 4 or 5 days.
Okay, okay, I’ll cut to the chase. They didn’t have my MRI results posted last night or today. Dr. K came in to see me by himself, even though I heard the chattering minions whispering outside my exam room door. Not the best indicator. He looked at my MRI images on line and said he really didn’t see too much different from the last CT scan, and again went over the treatment options I had. I asked a few more questions this time, being that I was less in shock than last time – until he started talking about options. My beastly cancer-garden cyst is in a place that should he operate to remove it would cost me both my bladder and my rectum, because the pufferfish and friends are in close proximity to both and somewhat connected and that means they have to take anything that is possibly harboring mutated cells in the neighborhood. Fucking cancer. I don’t really need to elaborate on what the end result of that would look like, because I am not even entertaining that option. Even if he did surgery, there’s no guarantee that it would be a success, for a plethora of reasons including the fact that it would just delay chemo until my body healed, which would cost me time, and it would involve a very long healing time, and would be risky and very hard for me to recover from. Not to mention that it would change the quality of my life forever. He again explained why there’s not going to be any radiation, and discussed chemo versus anti-estrogen therapy. He remains positive that the ol’ c-monster will respond well to chemo, but really what else can you do but hope for the best? So after much sighing, he gave me a big hug, told me Anne would be in with my schedule and paperwork, and said he’d see me in three weeks. No minions today – they appeared to be a fresh batch because it was a new semester and I am sure he didn’t want to traumatize them too much on their first day in gynecological oncology.
Anne came in and more hugs ensued. And crying. And laughing. And she gave me my schedule and reminded me to pick up the good ol’ decadron and compazine so I would be prepared for poisoning tomorrow. She kindly color coded my schedule for me so I know when I have chemo, and dr. appointments and blood tests. Blood tests are going to be weekly this time because the radiation from last time has compromised my bone marrow and they want to make sure my blood counts stay where they should be. I also signed a release for blood transfusions. I got kinda excited about that, because fresh blood is a pretty good thing, I like when I get blood, it makes me all energized. We talked about herbal medicine for side effects and to compliment my treatment and I’m going to explore that with her okay. No zofran this time, just compazine to start for the nausea. She’s a great coach, and told me I did this once and I could do it again – the difference being this time the monster is still inside, and last time they cut the shit right out. And last time they took organs I was not longer using anyway. This time, I’d be missing parts I’m kinda fond of. Which again, not considering as an option. I’ll be seeing her pretty regularly at the ol’ Cancer Institute, as I go through this cycle. I also made sure I got my note saying that chemo would be poisoning me and I would be missing work. And a lovely catalog of hats with fake hair attached as if I am going to be seen sporting fake hair – if I want fake hair, I’ll draw it on with my sharpies. And off I went, to get my first of a bazillion blood draws. I did get a penguin sticker for my bravery during the blood draw. I am going to keep my stickers on my folder. My new rule is no sticker, no blood.
And in a repeat of two weeks ago, me and the phone returned to the car, and did our texting. And crying. Much shorter this time. I just wanted to get home, so I ran in to Karn’s and located both the delicious Halos and some Ginger Brew, so I can get through the next week. Then I comforted myself with the aforementioned taco bell and banana milkshake. It didn’t really work, but I did see my beloved pony-pony and that made me smile. He was hiding in the barn trying to stay out of the freezing wind. Another day out of the glue factory.
I was going to drive around for a while but I decided to just go home and curl up in bed and pretend none of this was happening. Of course, I had to check my online medical record when I got home, so I could add to the joy of this day by reading the MRI report. Apparently, pufferfish is now sporting two tumors, instead of one. Two. Two bloodsucking leech tumors. Two. The second one is 8cm long. The first is 10cm. So they aren’t exactly petite. Doesn’t change the treatment, but causes additional emotional damage. More crying, more curling up in a ball, more cursing my luck and trying to figure out what I did in a past life to be poor, fat, and get cancer in this one. Of course, as you can read, I’ve rebounded somewhat because I am writing about it. Cancer fact – every tumor after your first one is not only considered to be the same type of cancer as your first one, but also considered to be the same stage as the first, so they are all IIIB. Lucky lucky me. If only cancer was the powerball – I wouldn’t have won the jackpot, but I would have five numbers. Cancerpalooza.
So yeah, I am feeling sorry for myself. I’ll get up tomorrow and pull it together and get to chemo with my new skull blanket and some projects to keep me busy for the six hours of poisoning ahead. Cross your fingers that the weather folks are right this time and there’s no more than 3 inches of snow tomorrow. And that I don’t get the evil wicked winter plague that Andy has. And that there’s no more brutal wind. Oh there’s the bell saying take the decadron – be right back. Decadron pills are green. So now I take a pink, purple, green, white, yellow, red and white, and brown pill every day. If I start to take morphine again, I will add a blue one again. A rainbow of pills and no unicorn. So that was my day peeps, what did you do?
It’s time for me to load up the iPod with some podcasts and go down and make sure I turned the oven off because I actually made dinner since by the time I get through chemo sick, the roast would have been ready to throw away. I have to get up early again and pack my stuff. I know this wasn’t one of my funniest or most amusing entries, but hey, we have to take the bad with the good. I am sure chemo will be eventful. Apparently they have me scheduled for an infusion chair instead of a bed, and I am hoping that will change by tomorrow, because I am there for six hours, I should get a bed. I may or may not feel like writing tomorrow after all the fun, but I am sure I will be back in a few days, snarky and sarcastic as ever. As always, keep sending the good juju my way. And I’ll keep you entertained with these thrilling bloggy bits.
6 January 15 | Categories: c-monster, Philosophizings, Picture Perfect, Profound Insights, Random Rambling | Tags: amusement, anxiety, biopsy, cancer, carboplatin, chemo, chemotherapy, ct scan, cyst, death, depression, diagnosis, disease, doctors, flying monkeys, food, hope, hospital, mass, procedure, pufferfish, taxol, treatment, tumor | Leave a comment
That’s right, my lovelies – I did not run over any armadillos, I did not get a cat, I did not mix vodka with orange juice, I did not become a brain eating zombie, I managed to stay awake for at least one hour a day, I resolved to clean the house when absolutely necessary (which it never truly was), I did not use a drone to attack the neighbors, I ate no cauliflower, I checked my phone once a day, and I never told facebook what city I live in, no matter how many times it asked. 10 Resolutions made, 10 completed. Completing such daunting tasks gives me such a sense of satisfaction. I don’t know that I can top this in 2015, but damn it, what’s live without challenge?
I’ll get to this year’s resolutions in a moment. I really want to give the real ending to the attack on the cyst, because I couldn’t before I told my dad (aka pop) the facts – I didn’t want to ruin the holiday for him or for my niece – I mean I had to ruin it for Andy and some of my brothers, co-workers and friends, and of course, it was a bit of a downer for me too, but I couldn’t do it to my dad. I think I’ve told most people, if I haven’t and this is where you get the news first, I’m sorry. It’s not the thing you get any enjoyment out of telling people and one thing I’ve learned is that no matter how many people I tell, there’s always going to be someone that I forgot to. I can think of five or ten or fifteen now. Fact is, I’m tired of telling people. Here’s a fact: Telling people you have cancer (again) is fucking hard. You feel bad that your are giving people bad news, you feel you have to make them feel better, they always ask how they can help and it’s just generally a bad thing. If I tell you, just tell me that you love me. Or if you don’t love me, just say, hey, whatever you need. I’ll keep talking if I feel like talking about it, and if I don’t keep talking about it, and you have questions, ask me. I have a blog, seriously, it’s not like this shit is secret.
Anyhow, I read the CT scan before the surgery. I saw the words “possible malignancy” – I saw the look on the ER doctors face when he had to tell me there were some concerning items on the scan. I know my body. I knew something was wrong. After surgery, when Minion 1 arrived, and I asked her about the offending nodule and if they found cancer, she danced around it, saying that they “don’t think” anything is wrong, but they are only using human eyes. I much preferred the way I found out the first time – the resident held my hand and said it straight up, we can’t confirm it yet, but from the preliminary pathology, it looks like cancer. This time, I knew I was going to hear not very good news at my appointment. I know when they take a biopsy, they look at the sample to make sure it’s a good one. They don’t just randomly snap out a bit of tissue and hope for the best. And while they are checking, they can notice whether they have good cells or abnormal cells. Sure, they may not know if it’s malignant with certainty, but they know if something’s up or not. Minion 1 needs to work on her delivery. I should give lessons.
I also knew I wasn’t healing as quickly as I have in the past. I had some pretty hideous bruising. I lost my appetite. I knew things were different, but I wanted to believe what the Minion 1 told me. So when I got to my appointment on the 22nd, I was ready for the news, or at least I thought so. I went by myself because Andy was in Pittsburgh with my nephew and brothers for a Steelers game. I didn’t want him to not have fun because I had an appointment. I asked my niece’s mom to go with me last minute, but she couldn’t. So I just resigned myself to going it alone. I got there on time, checked in, and waited. I got weighed, and found out I’d lost 40lbs since October. That’s a lot. And then I waited. My blood pressure was almost normal, but there was much excitement by the nurse when I told her I was off the morphine and just taking percocet. I wasn’t in pain. That’s good. Yay. No need to undress. Hang out, Dr. will be in. Now, Dr. K is a presence. He’s a tall, funny guy, with a southern twang to his voice and he’s always cracking jokes with nurses and staff and patients. I suppose you have to when you have to give the news he’s giving. He’s almost never late. I can sometimes hear him talking to other patients when I wait for him. Today I can hear him telling one that they will beat this thing, and that they will be in to review the chemo and radiation schedule with her, etc, etc, etc. Not good. It’s still taking a while for him to see me. I wonder where my treatment coordinator is – I have presents for her and Nurse Sue and Dr. K – just little holiday gifts to say thanks. I don’t hear Anne outside either – not good. Finally, Dr. K arrives with Minion 2 from the ER nightmare. They sit down. Sit. That doesn’t usually happen, so yes, it’s another harbinger of doom. Dr. K looks at me and doesn’t mess around – the biopsy shows cancer, and launches into how we could treat it. No surgery, no radiation, two different ways to address it with chemo, there’s no protocol for cancer in this area, quite frankly he doesn’t even know how or why it came back, it shouldn’t have at this point, once you pass two years, there’s a much less likelihood of recurrence. I just kinda look at him, and tell him I don’t have dying on my agenda. He said that’s good because he hasn’t, and isn’t, giving me permission to die. I’m not crying, I’m almost relieved because now I know – I awkwardly hand him the card and ornament I brought him – tell him I don’t know if he Jewish, or celebrates Kwanza or Christmas, but he can hang the ornament on his Hanukkah bush if he wants to – and thank him for taking such good care of me. I can tell this is as hard on him as it is for me. I think the Minion 2 wants to bolt, but is glad I am not crying and that I am, matter-of-factly, addressing what I need to do. Dr. K tells him to talk to me about the MRI, since he hasn’t staged it yet, and needs the MRI to determine what all is happening in the dark recesses of where the stupid pufferfish lies. I tell him I think the unwieldy beast is starting its dark resurgence because I’m having some discomfort in the area, and he says that’s what he wants to see on the MRI. Minion 2 has ceased sweating, I truly believe he thought I would lose it like I did when they offered my the psych hold in the ER. I maintained calm. OK, I was in shock, but it still didn’t involve crying.
You are never really prepared for the news. I’m still not sure I have accepted it, and probably won’t until they hang the poison bag on the rack and it starts dripping into my arm. Dr. K and I hug, he assures me that we will kick cancer’s ass and be laughing about this in no time. He tells me this is a shitty way to end the year, and a shitty way to start a new one, but go home, enjoy the holiday, and they will call me with the chemo schedule the day after Christmas. I tell him I trust him, he got me through it the last time and will this time. I shake the Minion 2’s hand, and like a scared bunny, he hands me the packet of papers for checkout and flees the room. I head to checkout. As I stand there, alone, having just been told my body has betrayed me, it hits me, and I tear up. I have cancer. Fuck. The receptionist asks me about the papers – I tell her all I know is I have a 4 week appointment on the 5th, and Dr. K wants me to have an MRI. She asks if it is scheduled – I tell her I don’t know – I was just handed papers by the Minion 2. She looks, and doesn’t have a clue why I have been handed all of Dr. K’s results and notes. I suddenly realize I need a note for work, and another prescription for percocet. I ask if she can get that for me when she asks him about the other papers. She does – he tells me I’m off until after my 4 week check up. I realize we never even looked at the incisions. Good thing I heal OK. She comes back with all my papers – I ask her if she can give Anne and Sue my cards and ornaments. She will. I’m still not really connecting to any of this. I get my appointment for the MRI and visit summary and head for the elevators.
I don’t break down until I am in the car. Then I am a snotty, sobbing, weeping, sniveling, snorting, coughing, choking mess for about five minutes. And alone. Horribly alone. And also very glad to be alone because I don’t have to worry about making anyone else feel better about my breakdown. I text who I need to text. I need to get groceries while I am down here. It’s funny how the trauma and the mundane activities intersect here. I need to get food. I also need to get home. I start the car and go to Giant, and mindlessly wheel the cart up and down the aisles, tossing shit in I don’t really need, but I have a fuck-it-you-only-live-once attitude and decide we’re having a fucking rib roast and ask at the butcher counter for a small incredibly expensive rib roast. Two hundred dollars later, I’m checking out of Giant with my rib roast. I forget to buy water. I’m not even hungry. I need to go home and that’s the last place I want to be. My iPod won’t fucking charge. I’m not going home until I have the opportunity to sing loudly with my iPod, and preferably with OWTH, until the pain inside is purged. I must also see my friend, Pony-Pony. I need some normality in this surreal scene. I also need gas. Actually, GAS first.
So I drive – first to a gas station. I fuel up and head to the MHS barn to see Pony-Pony. He’s not there. They probably are making him be the stupid donkey is some live nativity somewhere. I keep driving. I see my friends, the goats, at the goat barn, and I yell “fuck you” at the sheep in their pasture. My iPod is still not charged. I see some cows. I see another pony, and another, none of which are Pony-Pony, but at least I saw them. I keep driving. I realize my blood sugar is quite low, and I am a little shaky – I’ll got to Hardee’s. This whole time I feel like I am in weird freaky film where my character is in a dream world unbeknownst to everyone who sees her. It’s like none of this is real. I finally get the iPod charged enough to commence screamsinging. Fortunately, RTE 322 is not busy and I can cry and sing and drive all at once with no worries. It’s not real. It’s not real. I get to Hardee’s and order some sort of burger and onion rings. I manage to choke down the onion rings. I head home.
The drive was cathartic. And pretty scary. Occasionally I would look down at the speedometer during pauses between songs. I pushed 100+mph more than a few times. It’s not really my fault the car goes that fast. I slowed down several times. I wanted to get home and then I didn’t. I would have to tell Andy and then other people. This is the part that sucks. I finally drove home – I walked in and Andy was all excited to tell me about his trip and the game – and I killed that with a look. He asked how the visit went and I lost it. I sobbed and cried and told him how sorry I was he had to go through this all again. My kid is a good hugger. He told me I was the strongest person he knew and it was just cancer, and I could beat it. Then he proceeded to hug me some more. When he was adequately covered in snot, he went and got the groceries from the car. I didn’t want my expensive rib roast being stolen in this neighborhood
The C-monster is such a fucking burden. Not only do you have to worry about being sick, but you have to worry about bills and work, and the house and telling people and not upsetting people all while being told that this is the time you are supposed to focus on yourself. If there are people who are able to do that, I wish they would have a network where you could find out their secret. Because once you recover from the shock, you have to think about who to tell, and when and where and how and how are they gonna react and if they are old, like my dad, are you going to kill them? And then there’s the logistics – appointments and chemo and food and laundry and the joys of all the changes in smell and touch and taste. And when you have been the head of household for the last 24 years, that just doesn’t stop, you still worry about that. It’s just a lot. And no matter how much you have people tell you they will do whatever they can to help you, you don’t want to ask, because you don’t want to be a burden, and you want to be strong and tackle this yourself.
I’m tired of writing tonight, and I am tired of watching this fucking pathetic Steelers game while I type. I’m tired of being sick and doctor’s appointments, and not wanting to get out of bed. At least there’s minimal pain. At least there’s plenty of food in our house and we have functioning utilities. I can still write. My bed is comfy. I have a new blanket to take to chemo with me. It’s all gonna be over in 18 weeks (it better be). Tomorrow is the MRI – it will be a whole new experience for me, so look forward to that blog entry. I sure hope there’s no metal inside that suddenly gets torn from my body like I’ve seen in horror movies.
Good night my happy people…I’ll be keeping you updated – hug on your loved ones and do something fun with them before they can’t, or you can’t. Sleep well. Oh, about those resolutions, still working on them. I won’t be bound by your constrictive linear timetables. Kisses.
Oh yeah – three years ago yesterday, I got my first diagnosis. Happy Anniversary. I didn’t know the 3rd anniversary was also cancer.
4 January 15 | Categories: c-monster, Philosophizings, Profound Insights, Random Rambling | Tags: anniversary, annoyances, anxiety, bald, biopsy, cancer, chemo, chemotherapy, children and youth, cold. flying monkeys, ct scan, cyst, diagnosis, disease, doctors, family, fear, flying monkeys, gratitude, happiness, health, hope, hospital, humor, ipod, life, malignancy, mass, mri, narcotics, New Year, pain, positive attitude, procedure, pufferfish, selfesteem, side effects, surgery, survival, treatment, uterine cancer, whining | Leave a comment
I’m rewatching the most recent episode of Sons of Anarchy. I spent most of the day in bed – I’ve been spending most of this week in bed – due to the never ending pain that writhes through my body and my days like a nest of snakes. 12 days until I have another dr. visit, and hopefully find a stop gap for this stupid pain, other that 24/7 morphine with percocet chasers. So that’s why I’m not writing much – I hate the fact that my days are reduced to whining. I try hard to find beauty, be positive, laugh, but it’s a struggle and feels so fake – but I fake it anyway, because there’s no other way through. I keep reminding myself there’s a reason in all of this, a lesson, and I think back on the last time I was pain free like it was trip to Disney. I remind myself that life is suffering, that art takes pain, blah blah blah, but right now the only thing pain is doing for me is clouding my mind and making me sleep, and a sleep full of crazy mixed up dreams that leave me wondering what day it really is when I wake.
Yeah, I’m feeling sorry for my self. But in other news, this healthy eating thing seems to be working out. And some days I remember that I actually like eating things that are good for me. Even if they aren’t cookies.
I’ll find my way back here eventually – there’s too much in the world that I have opinions about not to.
1 November 14 | Categories: Philosophizings, Profound Insights, Random Rambling | Tags: amusement, annoyances, anxiety, challenge, cyst, depression, diagnosis, doctors, flying monkeys, funny, happiness, hope, humor, inspiration, life, mass, pain, positive, restless, sleep, squirrels | Leave a comment
I am so restless. Monday cannot come soon enough. I had to stop taking motrin last night because of its blood thinning properties, and I’m out of tylenol until later so I’ve been nibbling on percocet trying to make the pain go away. It’s not.
In an effort to distract me from writhing about in bed, bemoaning my situation, I decided to give cleaning out my closet a go. I applied the fifteen minute rule, and actually was at it nearly an hour. I got rid of a lot of things I won’t/don’t want to wear again. There are still some things I can’t get go of including the very Victorian/gothic long black dress I bought trying to hang on to my goth past, and a crushed red velvet mini dress from the same desperate period when I dreamed of returning to my glorious youth. I tried – I event took the black dress of the hanger, but in the end, I clutched it my hands, as my opiate-sotted brain harkened back to the days of pale skin and clove cigarettes and dancing wildly to Echo and the Bunnymen, the Jesus and Mary Chain, and Love and Rockets. Sigh. I realistically know that the dresses will hang in homage to my youth, never to be worn again, the same way there’s a pair of size 5 shorts in a box somewhere from when my short-lived border-line skeletal hips slipped them on one summer day following my high school graduation. Strange the things we treasure. Now, I’m lucky if I could get them over my ankles.
Even though the pain is still a constant ache despite the medication, the sedative effects are doing just fine. My eyes keep slipping closed and I should probably take a little nap because I’m going to head in to the den of babysnatchers to get a few more things done before I am off on Monday and Tuesday to have my procedure and biopsy done. They pushed the time back to 12:45p so a pathologist can be available when they retrieve the tiny chunks of flesh from SPFXL from snappy steel jaws that will be tearing them out of me. Of course, I don’t expect to have the pathology completed before I am released to go home, even though I secretly know they do because all they have to do is look at the sample and it’s either normal or it’s not. I don’t need to know how normal or abnormal the cells are, I just need to know one way or the other.
Not that it really matters, because as I was driving back from Pittsburgh on Thursday night, I was on Interstate 99, and if you have never been on it, there are 11 miles of the most beautiful stretch of highway I have been on, outside of Hwy 1, aka the Pacific Coast Highway, in California. The sun had just about set, the hills were green and purple and some of PA’s tallest rounded mountains were rising above the fog that was settling into the valleys amongst the farms and random houses spotting the countryside. It was so magically beautiful, I kept waiting for it to end, and each curve of the highway just became more breathtaking than the previous one. At one point, when the sun had almost sunk below the horizon, there was this lone cow standing next to a barbed wire fence on a hill close to the highway, silhouetted black against a violet twilight and I could not even remember when I saw something so simply marvelous. If I wasn’t moving along at 80mph, I would have hit the brakes and captured it on film. Fortunately, I can still picture it in my head. And I realized, after travelling 500+ miles that day, in the car, alone with my thoughts and in silence most of the car ride, that there’s nothing to fear, no matter what happens next. In that moment, it didn’t matter if I was going to live or die, because everything is connected and timeless. Yes, I had brief reminder of nirvana, one of those glimpses of what being human is all about, and why nothing is ever lost, why we are here, and why it matters, and that whatever comes is just another lesson for me to learn. It’s all going to be okay, even if it seems like it’s not. And I’m okay with that. I forget how strong I really am, and how much I have gone through and how I am so grateful for everything I’ve endured because generally speaking, it has made me the pretty fucking awesome person I am. And even all the not so positive bits, the parts of me I don’t like, are just challenges yet to overcome. Including the SPFXL.
So now that I have waxed philosophical for the day, I’m off to get ready to face the day and head into work to tackle a few things so I can come back after the probing and get back to the grind. Then it’s off to Presto’s 3rd Birthday Party. Have a great weekend, friends. And if I don’t check in before I’m rocking the CT scanner on Monday while I’m probed like an alien in a secret lab out at Area 51 in Arizona, send me some good vibes – especially that they have some good jello in the recovery area. Peace.
12 July 14 | Categories: Profound Insights, Random Rambling | Tags: anxiety, cancer, challenge, cyst, death, diagnosis, doctors, fear, flying monkeys, funny, gratitude, happiness, home, hope, humor, inspiration, life, mass, pain, positive, positive attitude, restless, squirrels, thingsIlove, treatment | 1 Comment
We’ll be going in to try and attack the SPFXL (see previous entry for clarification) which we determined today to be the size of my small desk fan. I’m just waiting for a procedure date – my treatment coordinator told me that they asked for it to happen in the next seven days, and if they don’t schedule it within seven days, she will call and tell them to make it happen, because I am symptomatic (based on my near-encounter with the ER yesterday). On the plus side, most of today was pain-free, or rather, pain-minimum, because for the last six weeks, I’ve been in pain to varying degrees.
Like the last attack on SPFXL, when it was known as PF, there will be an attempt to aspirate it, followed by the painful snapping of flesh from the beast itself for purpose of looking for the C-monster. The difference is this time, it will be more pieces of flesh being torn from me, and in more areas to see if there is something that was missed last time, resulting in the return of SPFXL. They still will force me to be awake throughout the whole ordeal, but at least I can play with the monitors and make them think I am dead several times for my own personal entertainment.
I’m trying to be positive, but pain puts a damper on that shit, especially when it feels like sharp spines in my lower back most of the day. The fact that it is in exactly the same are is a plus, and as I was told, I shouldn’t worry about it, it’s just concerning, not alarming. Of course when you have a blob the size of a newborn’s head inside of you, you are just a tad concerned. I will keep you darlings updated, I’m just not feeling the joy tonight.
Sweet dreams my pretties.
7 July 14 | Categories: Profound Insights, Random Rambling | Tags: anxiety, biopsy, cancer, challenge, cyst, diagnosis, doctors, fear, flying monkeys, funny, gratitude, humor, inspiration, life, mass, pain, positive, treatment | Leave a comment
Who ever said ignorance is bliss should have a monument erected to them. I believe I would be so much happier if I was stupid. There’s a price to be paid for knowledge, and for having information at our fingertips on the internet.
I won’t belabor the issue – my most recent CT scan (yesterday) report appeared online last night. In addition to having a ridiculously low and almost non-existent level of thyroid hormone (I knew it was low, but this was way below the low end of the measurement scale) I had the joy of reading that the former pufferfish has, in less that four months, become superpufferfish xl. That’s right, the pelvic mass that we all thought was defeated in a previous episode has not only recovered but has evolved like a Pokemon, say like a Igglybuff transforms into a Jigglypuff (see images below). It is now the size of a pink grapefruit or softball instead of a common baseball. And being that it is a holiday, and my dear Dr. K is out of the office until Monday, and probably did not feel compelled to check my medical records at midnight as I did, will not see the transformation until Monday, and they are not going to call me until Tuesday. I know my treatment coordinator saw it, because she called me about the thyroid thing, and left a message about that, but nothing about the SPFXL (Superpufferfishxl). Back to the waiting for the news.
Of course, as is typical, I use the sacred interwebs to research this evolution. Things that grow so fast are often malignant. The only positive I can derive from my online inquiries is that there is no change in the nearby lymph nodes or other organs, which is a good sign. Whatever it is, I will deal with it, but I hate being in the no woman’s land of not knowing. I can feel it fighting with the other organs nearby for space, particularly my bladder and stomach, and it is annoying. Not to mention the pain it is inflicting by its inflation as it rests on the nerves in my lower spine and coccyx. (I should state that I love the work coccyx). Either way, it is going to be jabbed and poked and prodded with sharp needles and cutting tools, and it’s gonna mean that there’s gonna be no Riotfest in my future because I’m gonna have to take time off for hospital visits.
And I’m scared. That actually goes without saying. To deal with the fear, I’ve been binge eating because nothing conquers fear than a package of limeade oreos, Chinese food and coolattas. Which makes me more uncomfortable. But I am letting myself have the 4th of July to wallow in self-pity. Tomorrow I’ll take an extra effexor, and get out in the world and see some babies I don’t have to take away from selfish, self-absorbed and self-indulgent adults, and remember just how strong I am. And see fireworks. The world is a better place with fireworks. Or explosions. Explosions are good too.
Celebrate the day, my little firecrackers.
4 July 14 | Categories: Picture Perfect, Profound Insights, Random Rambling | Tags: anxiety, cancer, challenge, ct scan, cyst, death, diagnosis, doctors, endometrial cancer, fear, flying monkeys, funny, hope, humor, jigglypuff, life, mass, pain, pokemon, positive attitude, restless, treatment, uterine cancer | 4 Comments
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!
14 June 14 | Categories: Picture Perfect, Profound Insights, Random Rambling | Tags: dad, depression, disney, doctors, family, father, father's day, fear, festival, funny, happiness, hope, humor, inspiration, life, mass, music, positive, positive attitude, road trip, squirrels, vacation | Leave a comment
I am so sorry for the giant image of my face in your feed. I corrected it.
I didn’t want it to end this way. I would change if I could. But alas, you came into this hoping for one thing, and now you have to deal with this. It’s probably because I am feeling all snug in my blankie, belly full of the yummy chicken tacos my son made, and feeling, for a moment, one with the word. or world. I meant world.
Or I may just be suffering from a psychotic break.
Anyway, I wanted to let you know I plan to do another of these blogging challenges. We all know how committed I get to these things, I mean, look at how well I completed the last one. I did one before? you ask. Yes, and clearly I was so successful at it, you had no clue. So I understand if you think I am succumbing to peer pressure (I’m not) or limiting myself (not really) or even, gasp, going to be boring! (never). I just thought the idea of blogging once a day with a theme of a specific letter harkened back to my failed poetry series that started with B, and ended just one poem later, with D. If you feel the need to point out that the alphabet does not begin with B and that B is not followed by D, but by C, you don’t know me well or you would know I reject your oppressive alphabet paradigm. However, I will embrace the common alphabet for this challenge. I will write consecutive blogs using the letters of the alphabet in the order they were drilled into your little malleable toddler brains, when you could not voice your opposition to standardized learning. Yes, I will conform.
You still have time to flee, if you must. It doesn’t start until April 1st. I would encourage you to stick around, because I like words. And stories. So maybe stick around for A, and B even. If we make it to K, well, let’s not get too far ahead of ourselves.
Goodnight my little friends. I look forward to your approbation. (A word, HAH!)
No Malignancy found. Just inflammation, blood and fluid. See you in June, for your 4 mo. check up.
Thanks for all the good thoughts.
5 March 14 | Categories: Picture Perfect, Profound Insights, Random Rambling | Tags: anxiety, cancer, challenge, cyst, death, flying monkeys, gratitude, happiness, inspiration, mass, positive, uterine cancer, zero to hero blog, zerotohero | 2 Comments