Tonight was The Menzingers at Union Transfer in Philly (awesome set, nice venue) with Mewithoutyou (great performance) and two other bands…one I missed because they closed a road in Fairmont Park and put up no signs causing mass chaos and delaying us. Got to hang out with Lizz and Blaine and had a mostly painless night. It was a rough day emotionally, so I’ll take the absence of any kind of pain.
Picture it – 2am, there I was, driving home in the rain, Andy passed out in the passenger’s seat. I was listening to the Jealous Sound, enjoying the dark, wet night, singing (or wailing as some might say) when I notice something that looks like a leaf crossing the road. It bounced 3 times before it I realized it was no leaf, it was a frog. A very brave frog who decided to cross the road. She was just a wee thing. But it reminded me that life is tough and all, but it’s got cute little surprises now and again. A brief bit of joy in the night. AND then I saw a second one. Double happiness. Two tough little buggers.
But because I am me, I immediately thought perhaps this is the apocalypse, and it’s raining frogs? Or does it rain blood? I forget.
In other news, I bought a panda suit today. Because life is too short to not have a panda suit. Really I just wanted the head, but apparently all the available panda heads are just ugly. I can’t wait to sit on the porch and wave to cars.
And I’m thankful.
And now, I’m going to crawl into bed, and watch last season of Vikings again. Goodnight pumpkins, Dr. is Monday, so I’ll be back soon.
Joyeux après-midi, mon petit kangourou amis I’ve been putting this off, not because I didn’t want to write it, but more because I am mostly a miserable bitch these days, and I don’t like that part of me. There is no position in which I am comfortable – the best I can get to is tolerable, and that takes a special medication combination that usually ends up with me falling asleep while typing. Or forgetting what I was typing. Or both.
WARNING GRAPHIC DESCRIPTION OF THE PERILS OF THE PEE BAG AHEAD. If you want to skip over the gruesome details stop here and pick up at the word SAFE.
I just need to bitch right now before I get into the trip to John Hopkins. My thighs are covered in black and blue marks from the tape constantly pulling as it holds the vagina tail to my thigh. It makes me feel like I have to pee constantly. Today there was all sorts of blood and clotty strings in the bag – gross as it is, it’s kinda like a sick set of sea monkeys. This is somewhat alarming when you go to bed with normal pee and wake up to bag of fruit punch. All the walking I have done this week cause irritation in the urethra and caused bleeding. I called urology who told me to stay in bed and drink more water which is silly, because the more water I drink, the more often the sacks of pee need to be drained. Then sometimes it causes a spasm, and then there’s more blood and tissue scooting along the tube. It hurts. I try not to take opiates and just stick to natural cures, which helps most of the time, but the last few days it took the muscle relaxers, medicinal herbs and tinctures and opiates to try and get to a point of just calm. And the hot flashes are still happening, not as often, but dear dog, just let me sleep. The nephrostemy is a piece of cake compared to the catheter, although the last few nights I wake up with the nephrostemy bag ready to burst because that kidney works really hard at night. Rant over.
SAFE TO RESUME READING
Andy and I made the trip to Baltimore to Johns Hopkins to get a second opinion yesterday. It was actually a pretty easy ride, it took just under 3 hours and we did not get lost once. I had to super medicate for the ride, because I didn’t know what to expect being in a car that Andy is driving for that long in my present condition. Needless to say I was quite comfortable when we arrived at JHOC. Well not really, with my vagina tentacle currently holding me down, I’m not ever really without discomfort. I suppose I could really just say I had a really good attitude when we arrived. Andy dropped me off at the door and I found my way to where I needed to be. I found the Women’s Health clinic on the 6th floor – JHOC is huge. Kind of intimidating. You get a wristband as soon as you enter the building – it’s like going to a show. Then there are there touch screen check-in kiosks when you get to where you are going. I tried, but I couldn’t get registered that way. Of course not. When I finally did get registered, I was handed a questionnaire and herded off to the waiting area. And wait for Andy and my nurse navigator to find me. While I was waiting, another female patient came back to the waiting area escorted by a nurse; she was clearly unhappy and shouting about how she should have gone to another hospital because they aren’t giving her the help she needs here. I’m trying not to judge, but her whale tail draws my attention as she’s huffing and bellowing in a seat four seats away. What I want to say is, bitch this hospital is ranked 6th in the nation in treatment, where ya gonna go? But I just keep answering my questionnaire.
I am supposed to meet my nurse navigator here. She said she’s meet me at 1:30, and when I look at the clock it 1:40, and I realize my ringer is off. I rifle through my purse, and find my phone and sure enough I missed her call. I quickly call her back and let her know I’m waiting, when they call me back to the exam room…she’ll meet me there. The nurse brings me back to do my vitals, and the nurse navigator arrives, her name is Liz. Introductions ensue, and I do some deep breathing exercises and surprise surprise, the combination of herbal medication and meditation has kept my blood pressure low. I’ve lost more weight. I’ll take that. I confess to my use of plant medication, and then of the JHOC minions comes in to review my medical history (because she didn’t have time to go through the 5 discs of medical history I provided to them minutes earlier). I tell the sad sad tale of the tumor gigantica and the first series of chemo and then the emergence of the cyst and its current incarnation and end with me crying that the tubes are not letting me live my life and that I how is this quality of life. The minion is very compassionate. They teach bedside manner well here. I regain my composure and make jokes. The Pietkiewicz Way. When faced with horrible circumstances, make a joke. Make many jokes.
Andy asked me on the way what I was hoping to hear at the appointment. I told him best case scenario would be to have them say “we’ll whisk you into surgery tomorrow and cut that cyst right out” and worst case is that I leave the way I came. I relay this to Liz and the minion, Shanae. I just want to be able to walk and sit and sleep without encumbrances and pain. That’s all. I don’t even care that my days are rather numbered – all I want is for them to be good days. I don’t like the bitch this pain is turning me into, I don’t like that taking a shower or making a sandwich or getting some juice becomes a gargantuan task that requires a logistical plan to move myself and my coterie of pee bags without any tubes catching on something or dragging behind. I just want to not have to wear a long skirt to go out to hide my vagina tentacle I hate the spasms and gasping when the pain shoots through my bladder. I hate that I feel trapped and isolated and incapacitated. I feel cheated.
I feel I am keeping it together pretty well. My mouth is drier than the sahara and I am out of water. Finally the Dr. comes in. What is with the Drop Dead Fred look these days? He’s a much classier DDF. He sits down, and we do a quick review of my history again. He’s a really nice guy, and probably just 30 years old (Ashley F, are you reading this? I didn’t see a wedding ring, you could be a stay at home mom, like for unicorns or cats) He’s rocking a emerald green and royal blue ensemble, so he’s a man of fashion sense and confidence. I like him. Then I brace myself for what’s to come. No, surgery isn’t an option, and not just because I’m a big girl, but because the cyst is smack dab in the middle of the area where I received the radiation treatments when I was first diagnosed. I already knew that I had received my lifetime dose of radiation in that area, which is why there was none this go round. When you get radiation, it forever damages the tissues in the area. This makes them slow to heal and regenerate if you cut into them again. And removing the cyst would require clearing the margins around it which as we know means goodbye rectum, bladder, and vagina, and hello tubes and bags (not all that different from my current rig of hoses and external bladders). And that would entail the removal of a massive amount of tissue in an very damaged area which would be brutally slow to heal and would run the risk of massive infection. The risks of that surgery would far outweigh any minimal benefit and would likely shorten, and without question, diminish the quality of, my life. He would start me on a regimen of more Tamoxifen (boo) and Progesterone which has the delightful side effect of making me even fatter and more miserable emotionally, or since I am not a big fan of Tamoxifen, there is a chemo drug called Doxil which has had some success. Don’t google it. It’s terrifying, but it could work. There’s some other hormone therapy and medications that have shown some success. The prognosis isn’t going to change. I have recurrent endometrial stage 3b cancer, that shows signs of metastasis in the lungs. It’s got a super low survival rate. Recurrent endometrial cancer isn’t one you survive. That said, Dr. T said that the issues I am having now are not really a result of the cancer, and in fact, the cancer is slow growing, and is mostly contained, and that the cyst is the source of all of my woe. For this, we discussed the risk of putting a drain in the cyst for several months to keep the fluid from building up and the possibility of it seeding cancer elsewhere vs. suffering with a catheter forever the duration. As the brutal urine extraction device is painful and unwieldy, I would rather take my chances with the drain. Dr, T agreed that at this point the risk is worth the procedure and said he would recommend that to Dr. K in his notes to him. So hopefully, the visit on the 21st will begin with “let’s pick a surgery date for a drain”. Dr. T said that if Hershey’s interventional radiology still doesn’t want to do it, then give him a call and see is JH’s interventional radiology will. He said the other option is another nephrostemy, but not a really good option. Finally, he said there is the smallest of possibilities that I could participate in a trial that is currently showing promise at JH, and just was published in a medical journal, but he would need a slice of my tumor to find out if there are these special satellite cells in it, because my tumor would have to have them in order to be considered for the trial. Other than that, Dr. T said he would have done exactly what Dr. K did, and would alternate chemo with hormone therapy as my cancer is not aggressively trying to take over. He brought up quality vs. quantity, and I quickly told him that I’m on the side of quality – that being riddled with silicone piping in my excretory systems is not how I want to go out. I would even suffer the permanency of the nephrostemy tube, if only, oh my dog, please, if only I don’t have to live with this catheter.
He also said that I should just continue treatment with PSHMC’s Urology department too. We discussed the potential for self catheterization during the day, and with the difficulty they have had inserting catheters in the hospital because the cyst is in the way, why would anyone think I would have an easier time of it at home? He did say there is a suprapubic catheter that could be inserted into my bladder through my belly, and while there would still be a bag, it would not be brutal and painful like the vaginal one is now. Wicked cruel vagina pee serpent. All I know is that it needs to go. It’s like a fucking albatross, except it’s not around my neck, it’s shoved inside me. So there you have it – even though I left upset that there was nothing else to really do, that wasn’t already being done, I felt validated that my Dr. was doing all he can. I knew that in my gut already, because it clearly pains Dr. K to give me bad news, but now, I’ve heard the same things from another well respected professional, so I can just say fuck off to the next person who says “there has to be something else they can do.”
So I held my breakdown in check until I was in the car, and even then, Andy and I just made death jokes. Being told this kind of news takes days to sink in, the sheer magnitude of what it means is overwhelming. I know I’ve told a handful of people personally, but with shitty news like this, blogging about it is easier than texts or phone calls. I don’t have to hear people tell me their sorry. I don’t have to see sad faces. I don’t want to be around people who are saddened by this. I want to spend my days laughing when I can. I want to say cancer fucking sucks. So I called my little fucking hummingbird friend Debbie, and had the conversation that only someone else who has had to face cancer can truly understand. And at the risk of alienating people, I need to be brutally honest, just give me fist bumps, stop asking me how I am. I have cancer, I’m sick and in pain, that’s my fucking reality and I am tired of pretending that my fucking world is fine. Yes, I can still laugh and smile and appreciate the beauty of the world around me, but asking me how I am doesn’t help me or you. And stop talking about miracles and me kicking cancer’s ass because while it may happen, it probably won’t – and I am not being pessimistic, I am a realist. I’m going to do all I can to prolong my life as long as it fit in with what I want out of life. Please don’t tell me what you think I should do, unless you yourself have been in my situation. Because until you are here, you don’t fucking know. And stop talking about this being a battle, and being a survivor or keeping up the fight, because you what that implies? That if I die, I failed. That I was not strong enough to overcome this disease or that I didn’t have the strength or will to beat this disease. That’s a judgment on me that I don’t need. Bottom line is this: In a perfect world, I will live a long disease free life. In a perfect world, I will go to my next appointment and Dr. K will have a cure. In a perfect world, no one will ever have to go through this again. It’s not a perfect world, and while I am not giving up hope that things can turn around, I am also not going to live in fantasy land, avoiding the very probably outcome. And I am gonna make death jokes. Because I can. I know I’ve said some of this before, but it bears repeating. I am comfortable with dying; I’m not afraid of it, but I am not going to stop living to wait for it. I am not ok with what is happening, but I am not going to sit in the window and wait for death. Support me by spending time with me and laughing with me. I need as much laughter in my life as I can get. And there are only so many names Andy and I can come up with for the hideous hose that rules my life right now. (Thank you Deb, for the conversation that was long overdue, and for letting me rant and not trying to make anything better, punches to you my friend)
Well it’s taken two days to write this. Oh and one other thing – think about this whenever you have to talk to someone who has something unfortunate going on in their lives – don’t say “ I felt so bad when I heard” or “I feel so bad that I didn’t know” – you know what that does? It makes the person feel like they have to make you feel better, which is the exact opposite of what they need. I hate that people get upset when I lay out the facts, because I feel like I am hurting them, and what I should be doing is using my energy to stay healthy. Not trying to make you feel better about my disease. I know it’s all done with love, and with a pure spirit, but it makes me not want to talk to anyone because it’s hard work to make other people feel better about my sad news. And now that I told the story, and vented, it’s time to release the sea monkeys in the pee bags to the ocean via the toilet-ocean pipeline, and then take some more pills and go to bed. I plan to venture out in the morning with Andy to go get supplies, so I can stop suffering from the assault of this nasty tape that is holding on my bandage on my back.
On the positive side of things, you can order replacement catheter bags from Amazon. I got to have onion rings when we went to JH. It’s only three weeks til OWTH in Philly/Baltimore. And since I can’t go to Riot Fest, I can use that money to get my passport. Sleep well my friends, and visitors, and critics. Hug your people and tell them you love them, and tell them how much they mean to you. And appreciate your excretory system. For real. Love you all.
4 September 15 | Categories: c-monster, Philosophizings, Profound Insights, Random Rambling, Soapbox | Tags: afterlife, annoyances, anxiety, biopsy, cancer, chemotherapy, cyst, death, doctors, dying, fear, flying monkeys, laughter, life, treatment | 2 Comments
Well, well, well.
I noticed from the upswing in hits on the blog that people have been anxiously awaiting this blog entry. It’s certainly not one I wanted to write, and it took a few days for me to get my head around the news from the Dr. and actually sit down and write. Mostly I have just been lying in bed, super-high on narcotics and whatever else is lying around, trying to pretend that none of this is happening. Do you think just once, my body and mind could cooperate? Just once, for a few blissful hours of mind and body numbing peace. No fucking way.
First, I couldn’t get numb enough. And believe me I tried. But then things kicked in and I was all sorta fuzzy warm and mellow and just kinda caught in that sweet spot between sleep and awake where you can just lie there and not care. Until the pain started. Then I had to revisit my dear narcotic friends, and a few Advil just for good measure. Next thing you knew, I was asleep. Well, for two hours anyway, because my increasingly smaller bladder had me up stumbling to the bathroom every two hours, as in the new normal in this house. And of course, I need to drink a lot of water, so that fun never stops. But here we are, Sunday morning, almost noon, and I am enjoying the bitter turmeric tea and encouraging it to kill cancer cells as I type.
I suppose I should reveal the news from the Dr. I have already had to text or tell a bunch of people, and first let me say, the words I hate to hear are “I’m sorry” – I know you are, you don’t have to say it. I also hate the sad look. So, if you can spare me any of that, it would be awesome. I am not going anywhere yet, unless the Tamoxifen gives me a heart attack or embolism. I’ll reveal the full prognosis after I set the stage, because even though the moments are etched forever in my brain, they aren’t stuck in yours yet.
So Heidi and I head off to Hershey that morning, bright and chipper. Okay, maybe the chipper part is an exaggeration, since I already viewed the CT scan report online, Friday night, after it was posted. I already knew one of the tumors had shrunken significantly, and that my bladder lining had thickened. I also knew that that fucking pufferfish was living, larger than ever, in the dark vastness of my uterine cavity. Inside of it was no longer a clear or murky liquid, but evil nodules of the deadliest kind (which they might not be, but in my mind, I’d already given the diagnosis). These were new and growing nodules. Evil bits that plague the pufferfish. However, despite the new larger size of the pufferfish, it was not causing me any real pain, that is to say, there was some achiness that I had attributed to just being lazy, but that I now knew to be pressure from the beast. It was not the relentless traumatic pain that I had before that warranted morphine just in order to function. In fact, I could get away most days without any medication at all.
Despite the two young deer that decided that crossing Interstate 81 was a good choice at 9:15 am, we arrived early at the appointment – and of course the waiting room was crowded, but not as crowded as it had been in the past. Of course, I was anxious, but I had kept deluding myself with the thoughts that Dr. K would just tell me it was nothing, put me on hormones, and send me on my way for three months. I was busy checking my facebook between talking to Heidi, or playing Red Herring and thinking “why didn’t I make that neato sign that says “I’m in remission”?” so I could take a selfie later. Then I was called. Well first they called for Diana, and ended up with the wrong person, then they realized their error and came back for me. And it was actually early for my appointment. Omen 1.
Well I went back alone, and was weighed and measured. When I looked at the scale, it looked like I gained three pounds, which was annoying, but turns out, I lost five. It’s hard to read upside down. I went in to the exam room with my nurse, and we did the blood pressure thing and reviewed my meds, and I gave a two for my pain level, and then this unfamiliar nurse left me and told me Dr. K would be in soon. And I waited. And waited. And waited. I heard and saw medical students wandering about, so I knew it was a minion day. This might take a bit.
And I waited. After 45 minutes, there was knock on the door. In came a young woman, who let me know she was a chief resident. She had a copy of my CT report, and asked me the usual minion questions. I told her I had already reviewed my report on line, and compared it to previous reports and she asked me what I thought. I told her I was pleased that one tumor had shrunk, but I was concerned about the other information. She smiled and said the tumor shrinking is good news, right? I agreed, and then she excused herself and told me they would be right back in a few minutes.
And I waited. By this time, I have concluded that this visit is going to have bad news. I never wait this long to see the Dr. It’s almost an hour. Dr. K has a southern drawl. I hear him going in and out of exam rooms, but never mine. My treatment coordinator, Anne, has not arrived to hug me. Something’s up. It’s not the usual laugh riot that my trip to the Dr. usually is. Even though I consciously want to explain away the delay, I know that the last time I had to wait this long, it was not good news at all. Nope. My gut knows this is bad. Omen 2.
Still waiting. The chief minion pokes her head in and says it will be just a few more minutes, smiles and exits. I hear Dr. K in the room next to me talking to the posse. I can’t hear what he is saying, but I am texting Heidi to tell her this is not good and I am still waiting. Then I hear him in the hall, telling someone to go find Anne and tell her he needs her. Then he says, tell her I’m in here, I am going in. And in comes Dr. K, at 11:45ish, with his somber face on. I notice this and say “hey, you have your somber face on,” and he sits down. It is never good when he sits down right away. Omen 3.
He whips out that CT report and begins. He says, well you already saw this, but I’m going over it. I say of course, I saw it, but my medical degree from google and web md are not helping me understand it. He says well the one tumor outside is significantly smaller. I nod. Then he says, but your cyst is back, and bigger, and again I nod. He says that this is not good. The chemo did nothing to the murky death cells in the cyst. They even grew. This is not good at all. We do not want murky death cell growth. He tells me that recurrent endometrial cancer is very bad, and I remind him I have used google and know this. He says that the only thing we can do now is try to stop the cyst from growing and/or keeping cancer from spreading. I nod, I’m on board for this. He sighs.
Anne arrived and she has a serious face on too. The chief minion in the chair aside me is silent. Dr. K says we can try another series of chemo, he can put me on a chemo pill, or we can do nothing. Ruling out “do nothing” as an option, I ask him what he thinks I should do, since he is the professional. and has a degree in medicine from a school and not web md, and he says that I have had a rough round of chemo and I should take the pill for three months, and enjoy my summer. Then he throws out “I am not going to bullshit you, if this things grows or spreads, this cancer is going to kill you.” Bottom line. He can’t give me a time frame or an idea of progression, but I know Dr. K long enough now that he wouldn’t be telling me this if it wasn’t a likely outcome. He then reminds me that I am not a candidate for surgery because of where and how this thing is situated and that even if I was, that again, he would have to remove my bladder, rectum, and as a new added bonus, my vagina. No, that is not anything we’d be considering anyway. Quality of life over quantity. I have done an amazing job keeping it together through all this, even making a few jokes. I ask for more oxycodone, while everyone scurries for my prescriptions and to write orders for CT scans in three months. Dr. K reminds me that I WILL be able to go see OWTH in September if they play in Philly. The grandchildren thing is still not something he can guarantee me, and frankly, it’s probably not likely.
Then he hugs me. I want to break down sobbing but I assure him I’ll be ok. Anne hugs me. I am in a state of shock, I think, and then I cry a little. I don’t want to go to check-out sobbing, because I will scare the other patients. I am choking it back. I am saying all the things that other people will say to me over the next few days in my head, there’s always miracles, get a second opinion, be positive – you know, all the shit that people say when they are trying to make you feel better. I let Heidi know I’m out and then I go to check out and stuff my bag with tissues, because the breakdown is coming.
I successfully hold it together until I get to Heidi’s car. Then I tell her my prognosis, and cry a little. Then we go to lunch. At Houlihan’s. I have two hard cherry lemonades. I am relaxed. I can deal with this, but I am devastated that I will have to tell Andy. I don’t want to ruin his future plans and make him feel like he has to put his life on hold while I wait for cancer to finish me off. I don’t want him to have to be without his mom. I don’t want to have to tell him.
For the record, I have told brother’s Michael and Alan that I am on Tamoxifen for three months, and that we will see what happens when we have CT scans in August. I didn’t tell them the endometrial cancer will likely kill me part. I am sure someone I have told or that reads this blog will spill the beans, but I couldn’t. I am also not telling my dad or my other brothers. I am sure again, that someone will tell them even though I DO NOT want them to know. I couldn’t not blog about it, because frankly I am tired of telling people and facing the sad face and hearing words that do nothing to make either of us feel better.
So for right now, I am in limbo. Knowing the history of this pufferfish and its habits, it’s more likely to keep growing than not. I am taking Tamoxifen twice a day, and hoping it helps. I am drinking turmeric tea and trying to eat better. I am chanting for healing. I am visualizing the pufferfish drying up and vanishing, but I also know better than to dismiss the likely reality. As I’ve pointed out to many of my friends, there are advantages. I’ll be able to get a prescription for medical marijuana when the law passes here in PA, and I will probably never have to pay back my student loans. One of the possible side effects of the Tamoxifen is that I may lose weight (I could also gain it, or die of an embolism, heart attack or stroke). So who knows?
Strangely enough, I am also okay with this. Knowing beats waiting for the other shoe to drop. And I can finally go get that new tattoo and get my ears pierced so I can get big gold hoops that say “sexy” and “baby” to rock with my bald ostrich head. And I only need to get through 2.5 months before my next CT scan before I know if the tamoxifen had any effect. Oh, and I get to return to work full-time on June 8th. Woo hoo. I probably could have had my Dr. write me off for the whole summer if I asked, but hell, I am tired of not getting a paycheck and having to rely on Andy for money. So we’ll see how this all works out.
That my friends, it the story. Now I’m off to make some lunch, or take a nap, or something. Enjoy your Sunday afternoon. Peace out.
PS. I have this goal of reading 1000 books before I die. I am on number 2. However, it’s heavy on feminist theory, so it could be a while. But you should be happy because it’s about feminism and you know how I love that. Just wait.
BTW, if you like this or any of my entries, hit the ol’ like button on this page. Maybe more people will read it then. And it gives me a happy star when someone likes my entry. It’s the little things, folks.
31 May 15 | Categories: c-monster, Philosophizings, Profound Insights, Random Rambling | Tags: amusement, bears, cancer, challenge, chemo, chemotherapy, ct scan, death, disease, doctors, dying, endometrial cancer, flying monkeys, life, malignancy, pufferfish, sick, side effects, tamoxifen, treatment, tumor, uterine cancer | Leave a comment
I made myself get out of bed and shower this morning. Blame the sun, all warm and golden, blasting through the multiple blankets that I use as curtains during the winter (over the real curtains) to block out the delightful breeze that cools my head which comes through these old windows in my bedroom. (also the reason I can hear every dog-damned word that is spoken/yelled/chattered in the street outside which is why I am sitting here typing instead of sleeping because I took two pills to try and sleep and no sooner than I was sliding into blissful opiate dreamland, inconsiderate people arrived home at 11:30 and had to make sure they slammed ever fucking car and house door they could find while merrily chattering all the way, and ruined that attempt.) So here we are.
In truth, I was going to write this entry early. Then I didn’t because I was consumed by a wave of darkness and to avoid contemplating the sucking blackness, I took a nap. However, after showering, I decided I needed to waste half of a tank of gas and get out in that sunshine and try and dispel the gloom that is wrapping itself around me like a blanket with static cling. I tossed on some sweats, a hoodie, and flipflops, because it is spring you know, and was at least 35 degrees, and out I went. I plugged the phone in for music, and then headed out to the valley. Driving around mindlessly while singing loudly always seems to sort things out, one way or another, so drive it was. I decided I wanted a peanut butter milkshake and a hot dog from Sonic, so I headed in that direction. Of course, my music of choice was loud and fast, as it usually is, unless I am trying to enhance a black mood, when we turn to something in the way of Elliott Smith. But today I needed to sing loudly about pain and depression and sorrow, past regrets and hopelessness, which would also be Elliott Smith, but without the painful plaintiff beauty of his chords. When I hit the quarter mile on the Brandonville Road, I laid my foot down on the gas as took it as it was meant to be driven, easing up as I hit the decline. It felt so good to be out, with the sunroof open, and have that minute or so with nothing more on my mind but that feeling of speed and screaming the lyrics to “Keep Falling Down” loudly, frightening the birds and friendly woodland creatures in earshot.
One good thing about winter is that it covers a lot of sins. Like garbage. Now that the snow is melting and everything is still dead dead dead, all the trash so carelessly tossed out the windows of cars is heaped along the roadside in the little streams of melting snow that run along the road, and around dead deer carcasses. Carcasses, carcassi? Whatever. The Ringtown/Brandonville valley roads are beautiful in spring, summer and fall. In winter, they leave something to be desired. Driving them brings up a lot of memories – from trips to the dairy to get milk with my dad and siblings, driving past the first home I ever knew but can’t remember at the #5 damn, picnics at Stauffer’s park when my parents would spend the day arguing and the kids getting splinters from the rickety old wooden merry-go-round, summer vacations “back home” when I was living in California when we would drive all day, cooler in the back, listening to a mix of Springsteen and Led Zeppelin, and top 40 and that new “punk” music I brought with me from California, and late night drives with quarts of beer between our thighs, laughing and carefree. And hours of driving and thinking. It’s my go to to try and sort shit out, just like driving the coast in California was – well not exactly, because well, oceans make everything better, right, whole. But drive I did. To Sonic. Got my milkshake and some popcorn chicken with barbecue sauce because I hadn’t eaten yet to day. And which I later regretted, because it wasn’t really chicken per se, just some chicken like substance with coating. Should have just stuck with the milkshake.
Anyway, as I drove I noticed that many more homes in the area are littered with shit. No other way to describe it, because it’s just like extra stuff that people own that they won’t throw away but have nowhere to store it so it’s just outside their houses in different states of decay. And I started thinking about whether the outside reflects the inside, or if these people don’t care how their house looks, and when did we start being so concerned with collecting so much stuff that we don’t even have enough places to store it. I always used to envy the houses in the valley because they were so neat and tidy, so pretty, and always wished I could live there, to be away from our too small, too old, too mismatched house. To play in a yard with grass. To not be surrounded with ugly black coal banks everywhere (for you young ‘uns, there was a time when our little town was in the midst of gaping scar of strip mining, surrounded by slate banks – much of that is covered with trees and shrubs now). The valley was where all the happy people must live. Now, I’m not so sure.
Anyway, in my critical analysis of what these signs of decay and garbage mean to society as a whole, I realized it was spring. And spring means robins. I must now find a robin. (Fact: Robins, while not seen much in the winter, do not migrate, they just stay huddled together for warmth. When spring comes, they emerge to seek food – robins are individualistic birds. They only get together to mate and survive winters).
This is now a quest. There are crows. Hawks. Geese. Red-winged blackbirds. Sparrows. Chickadees. No robins. (or bluebirds, for that matter) Where are the robins? I am not going home until I find one. As I continue to meander, I drive past places with memories, still trying to deal with all that is going on in my head. I figure that cemeteries, with their vast open spaces, will be a prime source of robin findage. I head in that direction. Then out of the corner of my eye, I spot a red breast, but I am driving way too fast to clearly confirm robin sightage. I am fairly certain that it was one, but until I can definitively confirm that it was robin, we shall continue to drive.
People who know me, know that cemeteries are like one of my favorite places in the world. I love the peace and sanctuary of cemeteries. Unfortunately, and in my opinion, oddly, the cemeteries are still mostly snow covered despite the last two days of sun, and their clear open spaces with direct sunlight. Much of the snow elsewhere is melted, but not really in the cemeteries. And no robins. I do notice a tombstone of a friend’s husband – her name is on it too, waiting for her. I think how odd, that your space is already reserved. Not that I don’t have plans for my own death rituals (which some of you will now be please to know, no longer include Andy having to chop up my body for the vultures to eat for a traditional sky burial, but do now include my ashes being made into bottle rockets and other firecrackers that can be launched into the sky). I am also looking for a trash can now as well as robins, to get rid of the evidence that I have been to Sonic. I check three different cemeteries, and nope, no robins. Just crows.
I’ve been driving for a little more than two hours now. I have managed to negotiate the roads well, missing all of the deepest and widest potholes. I feel bad for feeling sorry for myself just because I have cancer, since my drive has reminded me that many of my friends have recently suffered tragic losses in their lives and illnesses in their own families, and that there are people who live in countries that have no electricity or water. Some watch their families slaughter or live in countries at war where their homes could be torn apart by missiles or a tank at any moment. And here I am whining about having cancer. I need to be slapped. Don’t get me wrong, I am still depressed. I still feel hopeless, and scared and angry. But I am starting to see that it’s not as bad as it is for some people in this world. I decided I am going to take one more road to see if I can find robins, and then head home. My world is dark right now, but I’ll get through it. I’ve been through darker and more painful times, I’ve faced fear before. I just wallow a few days and get over it. But first, I need that robin.
I drive past the spring where we’d get water in the summer and wash cars and drink beer alongside the road outside of Brandonville. I remember being very stoned and listening to the Cars debut album over and over. And being very wet. We washed a lot of cars there when we were teenagers. And drank a lot of beer. I cruise through Mahanoy City, remembering a time when it was a pretty town, much like Shenandoah used to be, but now is just old and tired, full of rotting/abandoned/decrepit/burned out buildings, and covered in the grime of the coal region. I drive out towards Frackville, past the prison, and co-gen plants, sad that this is what’s left for this area. And then I see it. A fucking robin. No mistaking it this time. A fucking robin. Mission Accomplished. It’s all hopping around, looking for food on a partially snow covered lawn. Boom.
And I headed home.
Now I’m here. I am not sure how I feel, but I know I’m going to work tomorrow because I already promised to cover intake for someone since it’s Monday and they need to be in court. And I’ll be there Wednesday, because it’s a morale event, and I said I would bring cream cheese. Thursday we are headed to Pittsburgh to see Off With Their Heads play and stay at my brother’s condo. Friday, we are going to the Warhol Museum, and I don’t know what else. Saturday, we are going to see Pennywise in Philadelphia. Now this may seem like an expensive week, but the tickets for OWTH were only $12, and the condo is free. Pennywise tickets were only $25, and Andy is paying for those as well as for the Warhol Museum. We need to do something fun, to get us out of this rut we are both in. Fortunately, we like many of the same bands, so it’s something we can do together. So at least I have something to look forward to this week – and next week is…drum roll….CHEMO and another stretch of being confined to my bed for a week while I try to like the way water tastes. Life could be worse, and that is what I am hanging on to. Because when I lie in bed, tossing, it seems like there’s not but a black hole that’s sucking me in.
My friends, it appears that most of the neighbors have finally gone to bed, and the next sound to wake me up with be newspaper delivery in about 4 hours. Fortunately I had a nap this afternoon. Tomorrow is work, and more blood tests (it’s CA125 test day) and I get two stickers this time, because last time someone was in the sticker room when I was done my blood draw, and I couldn’t get one. I will have to share a pic of my prizes in the “no sticker, no blood” collection. I’ve got all kinds now, and will have to start another sheet soon. Hopefully, blood sucking will be followed by dinner with my shark sister Ashley at this Himalayan restaurant we both want to try. So there are things to look forward too. Life doesn’t suck that hard, I guess.
The itching of my eyes indicates I should rest, particularly since I still don’t know where my glasses are. Hopefully, writing tonight will keep me from too much tossing and turning. Sleep well my loves, and pleasant dreams to you all, and happy Monday. Be a busy worker bee.
23 March 15 | Categories: c-monster, Philosophizings, Profound Insights, Random Rambling | Tags: amusement, annoyances, anxiety, bald, blackness, cancer, carnivorous kangaroo, chemo, chemotherapy, death, doctors, dreams, driving, fear, flying monkeys, hope, life, road trip, robin, sadness, sick, sleep, snow., sorrow, spring, sun | Leave a comment
Update on my new year’s resolution(s): I was unable to refrain from reading comments on articles posted on the interwebs. #resolutionfail. And this entry includes the name of the town in which I live. Let’s hope facebook doesn’t read my blog and find out.
I’m doing better. Not as insane as I was just six days ago, but not nearly normal either. I made it to work this week – three days in a row. I was in the office on Wednesday and had training Thursday and Friday. Next week I am planning to do a full week in the office, then Monday and Tuesday of the following week, and then it’s time to roll up the sleeves, pump up a vein and get down with the mad chemo party. Chemo buddy for the next adventure will be the lovely Heidi Y, and I am way to excited to be able to bring and play the Chupacabra dice game with we are there!!! Yay!!!
I’m struggling a lot with anxiety at night lately – this is new to me – I’ve never had this kind of panic/terror/unsettled feeling before. My legs are mad restless, and then as I close my eyes, all kinds of madness creeps into my mind and BAM, I am wide awake and trying to find a way into sleep. Last night I tried to meditate, listen to some talks about lovingkindness and the only thing that shut my mind down at approximately 3 am was a coconut vodka eggnog and two percocet. Yes, I know it’s not the wisest combination or something I should use on a regular basis, but hey a girl has got to sleep. I try to unwind in a myriad of ways – not a single one worked.
It’s a day later, I’m still writing this entry and it’s again 3:30am. I’m having a lovely hotcocoavodka, listening to some classical music and trying to write myself to sleep. I was going to read myself to sleep, but then I couldn’t find my glasses – until I got out of bed and settled down in the writing chair to write. I’m still having anxiety. I’ve realized that my body is also out of control with hunger lately, that too is partially anxiety. The other part is my body stocking up for the next great famine. As for the anxiety, I can feel it in my shoulders, my stomach and neck. It’s hard to be “ok” when your body is being a rebel.
There really isn’t much more for me to write about tonight – I mean there is, but I’m not feeling it. It’s like it just wants to stay bottled up inside – maybe it’s waiting for me to be funny again? To write better? To not drink vodka? Who knows, but I know that this is the best way out of my head for me. I can’t even describe how different this whole experience is this time – it’s so much harder emotionally and psychologically. I hate being a reader. I hate being curious – it turns up way more information than I am ready to handle. I know that much of what I learn is really not applicable to my situation, but it’s still now in my head. That is why I am trying to turn my intellectual pursuits in a more spiritual direction. No, I’m not begging God to heal me – not that I mind prayers, because they are positive energy that I need right now to help scour my body of this nasty annoying disease – rather I am seeking a way to center all this fear and anxiety. To find my spiritual core again – I shouldn’t freak out in the middle of a lovingkindness meditation because cause I can’t forgive myself and love myself completely while I am still blaming myself for choice I made in my 20’s that may or may not have contributed to cancer in my, well, my later life. And bam, writing that hit the crux of everything. I’m blaming myself – for my cancer coming back – was it negative thinking? Was it poor food choices? Is the laptop on my belly causing radiation to make cells grow? Is it negative thoughts? Too many sexual partners? Poor health care? Eating ice cream? Birth control choices? Hamburgers? I can’t accept that this is random and keep blaming myself, irrational as that is, that my negative thinking and bad decision making caused this and the only way out is to get back to a better spiritual core and man, I suck as a a human being.
And there it is, and now you see visually what writing this blog does for me, other than give me a place to randomly make commentary – it lets me keep picking the scab of what I am trying to bury until I make it bleed. And when it bleeds, as painful as that may be, I get to let go of a layer of self-blame and self-doubt. The other night as I was meditating, I couldn’t get to the place where I loved myself unconditionally – I know that this is an issue for a lot of people, but I couldn’t let go of the big grey concrete block keeping me from forgiving myself and being able to love the wondrous, loving and generous person I am – the creative and funny and intelligent being – the person who has a spirit of adventure and sense of magic – because all I could see was the person who made some less than stellar choices in my 20’s, choices I don’t regret, because they are the reason I am who I am and if I had made other choices, my life path would be completely different, but I still can’t get those monolithic barriers out of the way so I can love who I am completely.
~ Newsbreak ~ 4:11. One of the drunk ass neighbors on Lloyd St is making his relationship issues public in the middle of the street. I am always torn between being a lookie-lou and running to the window to hear more and just hoping the police arrive and make an arrest. I usually go with the latter, and I am tonight. I don’t understand the people of this town, at least once a night, somewhere in the two block radius of my house, someone is always in the street between midnight and five am, having some sort of argument, involving screaming, daily. The only time I don’t hear it is when I have the AC on. And it’s winter, so no luck there. ~End Newsbreak ~
So yeah, back to my inadequate self, and my loathing of it. I believe tomorrow it may be time for a list here of my good qualities. And some clean up in this cave I call a bedroom. Some day, I will have my own studio, with a real desk, and storage for my mountains of craft supplies, and I won’t be all jam-packed in one room with it all like I am now. I wish I could apply some of my incredible life-coaching skills to myself. I am so good at helping others get their lives together, mine, not so much. Then I put off doing things until I shit in order, which I then don’t, and then I have just a mountain of unfinished projects and snakes of yarn everywhere. I just need a giant dumpster that seals itself shut after I toss stuff in it right outside my bedroom window. When did I become a fucking hoarder? When did I get so attached to my material shit?
I think it’s time to go now. Otherwise, I will start to analyze my actions and I want to sleep at some point. Sorry again for boring you with self-psychoanalysis. I’ll get funny again, I promise. But for now, I must finish my cocoa and crawl back into bed. Since I found my glasses, I will be starting to re-read “Awakening the Sacred Within” – I’m going to shoot for a book a week. For now my friends, this is it – and although boring, this entry is at least, somewhat shorter than most. We are almost one month through this winter thing! So, bon nuit mes amis. I was going to say don’t let the bed bugs bite, but for those of you in the child welfare system with me, that will simply evoke itching because we’ve all had to encounter the little critters at least once in our illustrious careers. Sleep well my friends. And remember to send those cancer killing thoughts my way. xo.
18 January 15 | Categories: c-monster, Philosophizings, Profound Insights, Random Rambling | Tags: amusement, annoyances, anxiety, cancer, challenge, chemo, chemotherapy, children and youth, choices, endometrial cancer, fear, flying monkeys, friends, life, lovingkindness, meditation, psychoanalysis, rant, restless, sick, sleep, sleeplessness, tired, uterine cancer, vodka | 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
Well, well, well, I’m back to write. I bet you’ve been wondering if you’d ever hear from me again. It’s been a long haul. I’ve been tempted to write a million times, but when you are on morphine 24 hours a day, you tend to lose interest in things you love, and/or lack the enthusiasm to finish things you start. It was like being in a fuzzy cloud, and one that didn’t feel all that awesome. I knew what was going on, could function, but sometimes my brain stopped dead, and I couldn’t remember what I was doing, or what I wanted to do. What was harder still, is because you “appear” normal, albeit somewhat slower than usual, people don’t quite grasp that you aren’t yourself in any way. Unfortunately, after the horrible experience in September, in which we attempted once again to thwart the pufferfish with drainage, that ultimately backfired and cause me unprecedented pain, I had to try and manage the pain in any way I could.
Until I couldn’t.
Some of you know what happened next, some of you don’t, and for those of you who are new to my blog, this is the true story of a girl and her pufferfish. And the tiny blue pills. And tears, lots of tears. It may be a two or three parter – I have a lot to write about and this morning I’ve decided I am not taking any more morphine, and just going to try to finish my withdrawal from opiates by weaning of the percocet instead – but that’s for the end of the story, and I’m jumping ahead.
It was the week of thanksgiving. I had to leave work early on Monday after court because I couldn’t even sit down – I was on the phone with an agency provider discussing a family and I was in such brutally punishing pain I wanted to scream, drop the phone, and run from the building. As she’s telling me about her concerns I’m fighting back the tears, and trying to get the attention of one of my coworkers to ask her if she could please take me home because I am not going to make it through the day unless I drug myself to sleep. Finally I just said, I’m sorry, I have to end this call, I’ll call you tomorrow and with the kindness of Momma Y, I made it to the sanctuary of my bed and sweet narcotic sleep. I made it through Tuesday, and Wednesday ended up being a ½ day snow day, so I had four days to try and recover. I spent all of thanksgiving in bed. I was supposed to go to my sister-in-laws, but I was suffering and it was best done alone and not in the company of others. My brother brought me food – I ate about two pieces of turkey and a few forkfuls of stuffing and spent most of my time in my bed asleep. On Monday, despite the lingering pain, I tried to convince myself I could go to work. I got up, dressed nicely, and headed off to the office. I made it until lunch time. I lined up some people to cover my on-call, (thank you Amanda and Kaylee, I know you probably don’t read this, but thank you anyway). I called the Dr.’s office that afternoon and they assured me my pain was likely constipation from the narcotics. I disagreed, but I agreed to follow their instructions. Without being totally graphic, it involved taking things to make my body expel waste. It mostly worked, but did nothing to alleviate my pain – it made me feel a little better at first, but that was short lived. I had to stay close to the bathroom – until things seemed to shut down completely. I mean stopped dead. I thought my body had just said no more.
Now it’s Wednesday morning. I wake Andy and tell him I need to go to the ER. We get in the car and I endure the horrific hour-long ride to Hershey. I could have gone to a local ER, but since all of my records are at Hershey and I trust them more, I suffered the trip. Luckily the ER is empty. The triage nurse takes my vitals, and we head off to an exam room – and as we turn the corner, we walk smack into a small group of hospital staff in haz-mat suits who will not allow us to go further – yes, haz-mat suits. They redirect us and the nurse assures me it’s just an Ebola drill, not really an Ebola outbreak but all joking aside, the way I was feeling, if expelling my internal organs in a bloody heap would stop the pain, I was down for it! We round the next corner, and bam! – more haz-mat suited peeps. No entrance. We reroute yet again and finally I am permitted to enter an exam room. The doc comes in, I tell the long sordid story of how I ended up here and my stupid ass pufferfish and tell them my pain is at an 8 after taking 15mg of morphine 3x a day and at least 4 percocet in the last six hours. He orders a CT scan and some dilaudid. Yay for dilaudid. Yay for CT scans. Yay for someone taking me seriously.
Now is when the story starts to get amusing/sad/disconcerting. I’m waiting for a CT scan. A new nurse comes in, a new doctor, another nurse, and every time I have to tell the story of how I came to be in the ER starting with my hysterscopy, hysterectomy and the c-monster treatment. I wait and wait for the CT scan. In the meantime, I get an IV started, and they ask me for a urine sample. I can’t pee. I haven’t drank anything in hours, and frankly, the last few weeks, I can’t pee on demand without pain and a short walk around the house first. So guess what I get? Yep! Catheter. And sad to say, I was perfectly okay with that because I was in so much pain, that couldn’t be much worse. Well apparently it is. But whatever, I am just glad I am in the hospital and they will make me well.
Finally, I’m off to radiology. I get a CT with contrast dye in a cool machine with Minion stickers. I am glad that Hershey understands the importance of stickers on the CT machine. It makes it so much more relaxing. The staff are great, they always joke with me and help take the edge off. Then it’s back to the room. Dr. #1 eventually comes back and tells me that gynecological oncology is looking at the film as there are some concerning developments and they will be over to talk to me because I may be admitted for surgery to day. Nervous at the word “concerning” but relieved that I am not crazy and relieved that there are changes in pufferfish, and that I am not just imagining it, I nod in understanding. It’s okay, the dilaudid is still working, and I’m sure I am going to find relief.
Understand that my doctor, Dr. K, has elected to take his family on vacation this week, so he is not privy to these developments, but they assure me his associate Dr. F will be over to talk to me. The door opens – enter two gynecological oncology minions – and no Dr. F. I ask if I will be gutted today – they say not likely, and proceed to examine me – they ask about my pain, and my use of colace and senna and what’s going on. I ask them about the CT scan – they say they didn’t really see too much of difference, the pufferfish is only “marginally” bigger and there’s a nodule now growing inside, and the fluid is clouding and not clear like it was, but they think it’s just because pufferfish ate the hematoma outside of it. I’m dying of thirst. I’m crying again trying to tell the story and explain my pain. They look at my stomach and notice some (old) bruises. I explain that I pushed again the banister trying eliminate the pain in my stomach, and could have possibly caused them. I also bump into the top of the banister frequently as well, which inevitably leaves a bruise. I am fat, I have a huge belly, I sometimes don’t negotiate well in the middle of the night when I am trying to get to the bathroom. They seem appalled at this. I don’t get it, but they assure me, they will be back shortly with Dr. F. They will have a plan. They are pretty sure I am going home today. They scurry out.
At this point, it’s noon. Andy has been patiently sitting with me, but he has to work tonight, so I try to get someone to come bring me home if I am not going to be admitted, so he can go home and get some sleep. When the minions and Dr. F don’t return by noon, dear sweet Paige agrees to fetch me home and I dismiss Andy. I am alone. Waiting. It’s now 5 hours in the ER. I continue to wait.
Enter Dr. F and the posse. She’s very nice. The dilaudid has worn off and no one asks about by pain level anymore. I can only lie on my side, but I roll onto my back for another exam. Dr. F talks about the CT scan – she says if I was her patient, she’d remove the pufferfish, but she has to wait for Dr. K to come back because I’m not her patient. Great. She uses words like sympathize and empathize and I tell her she has no clue what I am feeling because unless she has had chronic pain herself, she has absolutely no understanding. I need this thing out of me. It is causing me crushing pain, which she proceeds to dismiss as constipation, and tells me I just need to follow the colace/senna regimen for a few more days and it will go away, because my pain is now the result of massive amounts of narcotics, not the pufferfish. I disagree – it may be compounded by it, but it’s the pufferfish, it’s in my fucking body and I know what is hurting me. Then comes the most ridiculous part of the tale – she says her bigger concern is the bruising on my belly. She is concerned that I am trying hurt myself and tells me that she herself gets a little crazy with road rage from time to time and that she will be happy to allow me to stay overnight if I feel the need to be safe and talk to someone. Meltdown mode initiated. Eyeroll commences. I try not to react inappropriately, and through my tears, I tell her I do not need a mental health hold, I need someone to stop the pain. She says, no, no, she doesn’t think I have mental health issues, but just that she is afraid I am doing dangerous things to hurt myself because I can’t cope. I tell her that is insane. I was just trying to help relieve the pressure for a few minutes, because I couldn’t make the pain stop, even with all my pain meds. I don’t need to talk to someone about my pain or how my pain feels. It hurts and talking to someone about it, will not lessen it, extracting the pufferfish will. Thank you very much for thinking I am on the edge of a mental break down, but make my pain stop. She then proceeds to tell me that there’s really nothing they can do, so go home, keep taking pills, and come back and see Dr. K on Monday for my scheduled appointment. Really? 8 hours in the ER, and your response is, head on home and come back on Monday. Unless you want to spend a night on the psych ward, because sure, that’s gonna help. They will do nothing to help manage the pain, but they will help you talk about it. My response, no thank you, I will just go home and cry myself to sleep. Dr. F tells me she has ordered a suppository to help with the swelling in my rectal area. I ask if this will stop the pain – she says it might. Might. Yay. That’s fucking awesome. Another hour waiting for the suppository. 9 hours. I feel not one iota better than when I came in, in fact, I feel demoralized, frustrated, and now, starving. ER Fail.
It doesn’t get better. I go to the hospital cafeteria. I spy the special tandoori chicken wrap. Of course, it’s sold out. Why wouldn’t it be? Curry makes me feel better, so of course there isn’t anything curry flavored to help me. I choose a veggie brie and mushroom sandwich. The lady at that station is mostly ignoring me. Finally she acknowledges me and allows me to purchase some food. It’s cold. So now I have to figure out hot to warm it up. I find a microwave and make it lukewarm. I inhale it because I am starving and suck down a green juice. Sated, I head off to the lobby to await Paige’s arrival. Fortunately for me, there are screaming children in the lobby as well. And potential clients. I only want to go home. Home. I want to take a handful of pills and sleep. Please.Let.Me.Sleep. I could have had just as much success with treating my pain at home as I did here. Children continue screaming. Fucking hurray.
Paige arrives to rescue me and bring me home. I pass Andy on his way out to work, fill him in.
I can’t go back to work – I can’t sit or stand or lie on my back or stomach. I can lie on my side. Until that side goes numb and then I flip. Moving causes pain. Walking causes pain. Eating causes pain. Breathing does not cause pain, but allows me to remain alive, which causes pain. And my mind is still chewing at the fact that the only thing that was offered to help manage this pain was a psych hold.
The days pass waiting until Monday. Monday I see Dr. K. Monday Dr. K will fix me. I drift in and out of painful sleep, spend too much time in the bathroom in futile efforts and spend an equal amount of time rocking myself back and forth trying to make the pain stop.
Of course, this part of the story wouldn’t be quite complete without me sharing the fact that I also can see my CT scan as part of my health record. I can also read the summary. I see the words “potential malignancy” “node” “marginally larger”. Previously, pufferfriend was 10X11X9cm and today, it is 12X12X10cm. In one month. Now, yes, it seems like that’s not much, I mean it’s centimeters. Pufferfish is located in the pouch of Douglas (here’s where you google where that is). There’s this ancient torture device called the pear of anguish. It used to be inserted into the vagina or anus of the victim and then it was opened internally, mutilating them while causing unimaginable pain. It would be slowly increased in diameter to rip you apart from the inside (again, use your google skills for the detail) An 1 or 2 cm increase in the size of the pufferfish = 100 or 200% increase in pain. It’s no wonder that the morphine isn’t even touching this. It’s an internal wedge between my bladder and rectum and it’s making everything else compact so that it can take up the space. Fuck you “marginal” increase – it wouldn’t be so marginal inside of your uterine cavity or if someone started ramming a giant tree branch inside of you that just kept getting wider and wider. It’s like having a baby grow inside in a very wrong area, and without a reward at the end of nine months. I’ve had this thing longer than I carried Andy, I’ve had it longer than I had cancer treatment, I’ve had it too long. It must come out.
At this point my friends, I will pause and leave you hanging for the rest of the story. I don’t want to write a novel as an entry, and this shit’s already three pages long. I will tell you that things have improved somewhat, and will return with details tomorrow, because I know, you can’t even imagine not knowing the intimate details of what happens next. It’s no Sons of Anarchy finale, but if you like medical dramas, it’s all about that, both medical and dramatic. So enjoy chapter one, my friends, and I will return with my next installment tomorrow.
18 December 14 | Categories: Philosophizings, Profound Insights, Random Rambling | Tags: amusement, annoyances, anxiety, biopsy, cancer, cold. flying monkeys, ct scan, cyst, disease, doctors, happiness, home, hope, hospital, life, pain, peace, procedure, pufferfish, restless, sadness, surgery, writing | 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
So, I’m trying to wean off of the morphine. I had my appointment with Dr. K. My treatment plan is this: suffer. No, really, it’s manage the pain for now, try to lose 30lbs or the weight of a medium size dog, and then try some laparoscopic surgery in the New Year. Not exactly what I wanted to hear as my doctor was stabbing me in the side saying “yep, your cyst is back and no, I won’t cut you open.” Apparently, the pufferfish is not the toxic life threatening kind of blowfish. It’s just a pest. An inconvenience. A bother. And I’m stuck with it at least a while longer. Because of where it is, and my “fluffiness”, the Dr. would like to see me drop some “fluff” to be in a better place for the procedure. He has said if he goes in and it would be more hazardous to remove it, than it would to leave it be, it’s gonna stay. If he can’t get it with a laser, I’m stuck with it unless something more dangerous grows alongside it or I am impregnated as part of an alien experiment. It’s like a baby I’ll never deliver. Again, another example of me wishing for something and getting it, but only in the universe’s twisted system of fulfilling my dreams.
So my days are now categorized into “manageable” and “unmanageable” – the pain is ever present, but there are days when it is tolerable, and days, like this morning, where it is brutally cruel and tortuous. I waited too long to take a pill, and I was rewarded with two hours of writhing around on the bed bellowing like an elephant seal and looking like a beached beluga whale. And to make is stop, or rather, dull it, I had to double up on the opiates and send myself into a coma for an hour until it was time to go to work. Don’t worry, I am smart enough to not drive on coma mornings. And every time this happens, I make a silent wish that medical marijuana will someday be the law in PA. Because I believe that much of my pain would be squelched by a cannabis brownie.
This will not deter me from the Wine and Whine OTR trip this weekend in which we shall descend on local wineries like thirsty locusts and suck up grape nectar until we tumble back onto the bus. I’ve never done one of these wine tasting trips, but I am looking forward to it. Although I believe there’s some sort of cautionary bit on my prescriptions about alcohol intensifying the effects. Also long as it’s not intensifying the pain, I should be OK.
I apologize for my failure in the witty blogging that you’ve grown accustomed to, but the narcotics dull my shine. I hate not being myself, and I hate being in pain and there’s no happy medium. But I’ve committed to myself to write my way through this, so maybe one other person who is struggling with the magnificent residual gift of the c-monster doesn’t feel insane. They give you all these pamphlets about what treatment is like and what the effects of chemo are, etc, etc. And they show all these smiling “survivors” on TV, all bright and beautiful – but what you don’t hear about is all the goodies that the disease and the treatment leave behind. I’m still having to randomly smell phantom odors (all of which are unpleasant), I’m tired a lot, my hair still tries to be curly, and then there’s this fucking stupid cyst. But there’s no evidence of any cancer, so for that I’m grateful
So since I took my happy little blue pill an hour ago, I’m nodding off as I type, so this signals I should try to get some rest while I’m in the honeymoon stage of numbness. But before I go, I should announce that in my efforts to defluffitize, I’ll be trying to eat in a healthy manner. That means no more “single serving” pints of Ben and Jerry’s and stuffing pizza in my mouth like I am the beaked creature in Beetlejuice whose head practically opened in half. I’ve asked my coworkers to punch me or knock unhealthy food from my hands at the office, so if you see me in a public space dining on sugar bombs, please feel free to do the same. I am somewhat upset that I am trying to do this during the eating season when orange kitkats, turkey cranberry paninis, and warm chocolate cookies are taunting me like tiny demon sprites around my head. And now it’s time to watch American Horror Story, because the morphine and percocet don’t give me enough weird scary dreams on their own.
Peace my pumpkins, be well.
8 October 14 | Categories: c-monster, Philosophizings, Random Rambling | Tags: annoyances, anxiety, cancer, challenge, cyst, diagnosis, doctors, fear, flying monkeys, food, gratitude, healthy, home, life, morphine, narcotics, pain, positive, restless, side effects, sleep, surgery, uterine cancer | Leave a comment
I wanted a gyro for dinner. I was headed to Nesquehoning where there exists an alleged Arby’s that serves this coveted treat. Yes, I know it’s not a “real” gyro. But it’s tasty. And what I wanted. And I was hungry. It’s not really alleged. I’ve been there. And had said gyro. This time however, I was trying to find it from a completely different direction. Yes, I had my cell phone and I could have mapped that shit, but where’s the fun in that? I was going to guess where it was. Bam. Gyro is minutes away.
I know the road where the Arby’s is. I just need to find it. I’ve gone there on a back road before, and though it was in the middle of the night, and few lights or roadmarks were to be seen, (and it was two years ago) I believe I’ve retained enough details to easily locate my dinner with minimal difficulty. Of course I can. Toss in the added factor that I am on a long-acting narcotic, I’m tired and according to my treatment coordinator, it probably isn’t my best decision to be driving, I will still continue on this fool’s journey. I make the first turn of my adventure. Crossroad? Left, right, forward. Um. Left.
Here’s where I tell you that my sense of direction sucks. Which is why I also have a compass app on my phone as well as the maps app. Am I using either of these? No. That would only make sense. And there’s no need for sense on this road trip. I decide at the next intersection that a left turn is in order, because another left turn is probably required at some point, so let’s just go for it. It only takes a few miles on the road to realize I am driving in a direction that is probably directly opposite of where I would find Arby’s because I am on the side of a mountain. I know this is definitely where Arby’s is not. I suppose I could turn around, but I know I’m not going to. Because becoming lost in my attempt to find my way to dinner has just become the allegory of my life.
I can see how this has caught your attention. I will explain. I realize as I am driving along, that the scenery is gorgeous. I know I’m not headed in the right direction. I know what I should do is turn around and find my way back to what I know, but I’m not going to. I’m going to keep driving and see where I end up. The gorgeous autumn colors of the mountains have caught my attention. I’m not paying as close attention to the road as I probably should be because I am looking around. I’m pretty much alone on this road anyway. I spy a lake. I decide to tuck this nugget of knowledge into my “check that shit out another day” file, even though every fiber of my being wants to go see it now. I remind myself I am on a mission, and I am already headed in the wrong direction. My curiosity is forcing me to explore this new road. Normal people would turn around. Normal people would look at a map. Normal people would have looked at the map first. I am not normal people.
This has been my life. I know where I need to go, most times, even how to get there, or how to figure out how to get there. Sometimes I am on the right road, and make a wrong turn, or sometimes I am on the right road and let something else distract me, or sometimes I make a wrong turn right at the start. And instead of turning around and correcting my course, I just plunge headlong forward. I justify it in my head as “learning experience” – sometimes I get so lost that I never get to where I started, but in that journey I get so many lessons and rewards, as well as setbacks and deadends, that even when I fail (IE: no gyro for dinner) it’s okay, I’ll just make do with something else (IE: sucky Turkey Hill mini pizza). This has been my whole life. But so far, instead of enjoying the ride, I’ve been cursing my stubbornness and cursing the fact that I didn’t turn around. I forget what beautiful (and dangerous) things I’ve seen along the way. I forget that the success was in continuing to go forward, despite the obvious signs that this was not how I was supposed to go, but going ahead without reservation. Not traveling recklessly, like crossing into clearly the wrong lane, but sometimes driving onto the shoulder and suffering some bumps until I get back on the road. Sometimes traveling too fast and hitting a pothole that jars me back to reality. Sometimes just losing track of time that I miss out on something else. My life is a series of wrong turns that start off as trips to other places. I sometimes get to where I was going, but even when I don’t, even when I break down along the way, it’s an adventure, and I see a lot of cool things, and sometimes I learn the hard way that some chances aren’t going to work out.
So what did I see on my trip today? Beautiful scenery, gorgeous houses tucked in the woods. Log cabin. An amazing line of gnarled trees to go back to photograph another day. A lake to investigate, a new alternate route to a destination. Knowledge that next time it’s a right turn or straight ahead instead of left and left. Knowledge that Turkey Hill pizza sucks and that I shouldn’t have an energy drink if I am already cranky. Sunbeams. And the knowledge that I just need to keep driving.
So this is the lesson grasshoppers. It’s okay to use a map. That’s what they are there for. However, when you choose not to, you also choose to accept whatever the road you follow brings you to. Good or bad. Yummy gyro or nasty pizza. You can go probably go back for gyro another day, but if not, you can still have other delicious treats. Unless you refuse to let go of your desire for the gyro. This is all very zen.
I leave you with a picture of how you can take something ugly, like the stubs of dead bushes, and turn them into something magical. Or you can leave them like ugly remnants of another life – the choice is yours. Every time I see them I think of the great imagination it took to transform those dead sticks into a roadside coal reef to make the day brighter for every person who takes the time to notice it.
But wait, there’s more. There’s this tree.
It’s at the top of a hill. A hill in the middle of a cemetery. You can see death all around it, or a magnificent tree at the top of a gorgeous hill on a sunny afternoon – which leads me to this parting thought…I saw a retirement/nursing home today adjacent to a cemetery. It made me think about the home’s residents – does it trouble them, this reminder that their time is now so limited or is it comforting to have the constant reminder that every day is precious and that the reality of death keeps them focused on the present. Just a thought.
No news from the Dr. BTW. Pain is still my constant traveling companion. Always screaming for attention in the background. Hopefully tomorrow brings answers. But for now, it’s carnage and death, SOA style, my guiltiest of guilty pleasures.
Be well pretty ones. If you’ve got gyros – eat them.
30 September 14 | Categories: Philosophizings, Picture Perfect, Profound Insights, Random Rambling | Tags: anxiety, death, fear, flying monkeys, funny, happiness, hope, humor, life, pain, positive attitude, rant, thingsIlove | Leave a comment