In which Danielle, in her delirium, ponders whether or not she is a monk

12/28 In 28 minutes it will be Thursday but here is the seal for Wednesday. I'm up itching and sweating. Today I began the 3rd medication prescribed to me by my oncologist for itching, but nothing seems to help. This is by far the worst sensation I have ever felt. And the sweating only adds to the fun. Tonight I began to dose off after a particularly unbearable evening of prickles, when suddenly the itching woke me wide awake and I began to really get a sense that I am dying. This can't be the way one feels when they have many years left to live. I certainly can't live this way for much longer. And I can't imagine this is an early stage of cancer. My breath is short, my muscles are diminishing, I cough as if I'm barking with pneumonia again, and the itch and sweats keep me from wanting to go out in public. I feel I must really start getting my things in order. After tomorrow's PET scan and today's CT scan, I'm sure they will tell me I have stage 4. I feel, more than ever, if it is so late, I will be obliged to say no to chemotherapy. Actually, I feel obliged to say no to that anyway. This is certainly beginning to feel like my destiny. I can accept it, but I really worry whether everyone else can. Upon my death, I would like a celebration to be held in which everyone eats a donut in my honor. I also demand that they play Refused's "Rather Be Dead".

1/14/17 (actually 1/15 at 12:18am)
I haven't slept since last Saturday evening. How am I awake? How am I alive? Am I developing super human powers because I am close to the threshold? Am I a monk? Since I last wrote, I saw my (former) oncologist, who told me my cancer is either stage 2B or 4 (if only I had done the bone marrow biopsy like he told me to) and that if I didn't do chemo I was stupid and I'd die a horrible death. All of which may be quite true, but were not very tastefully articulated. Thus, I shant be giving him my money any longer.
     Friday was last day at school for awhile while Emily subs. I am fading fast, but don't want to leave the page without expressing how infinitely grateful I am for her and the divine presence she has in my life.
     And the children! And their hugs and their sweet cards and their funny little messages: M and his lingering after school. J & T's tight squeezes. All the parents and their meals & jammies and grocery cards and gas cards. My colleagues and their incredibly love, MD especially. I just. I love. I love and I love.
    And thank you for my friends far and wide and the amazing men that care for me at home on a daily basis. And aunt who worries. I love and I love. So much.

The First Holy Night

12/25/16

     This journal comes from my dear friend Rebecca. She gave it to me as a birthday present and it comes at a perfect time, as my current state of being calls on me to begin journaling again. Around the early part of November, I was told that I likely have Hodgkin's lymphoma. That assumption has been confirmed in the past weeks, and I am now waiting to go in for a CT and PET scan to understand the staging of the disease. What will I discover? What choice will I make? It seems the only "choice" they give you is no choice at all. All cancer patients undergo chemo. There are some chances they would like to also do radiation. But no, no one will ask you, "Do you wish to proceed?" Instead, you must find a very different form of courage than one you've ever had to find or use before, and you essentially have to tell your doctors, friends and family to fuck off--because this is your destiny and your decision and one is I am just not certain that chemo is always the correct and only choice to make. This may be the most punk rock thing I will ever do. 

     Last night was the first Holy Night and I cannot remember my dreams. I only recall itching through the night. Damn this itching above all else.

Monday, 26 December 2016

Couldn't sleep last night--too painfully itchy. Therefore couldn't remember dreams AGAIN. Feeling very sick with cough, prickly itch and sore sciatica. Read about curcumin. Hoping to go this all natural route, but worried about itch and dying. 

Your Mom.

If you follow me on Facebook or Instagram, you may have been wondering when I was going to write about that First Descents rock climbing trip I went on last month. (Or am I just ego-tripping on some delusion that people actually anticipate my blog posts?) Whatever, let's assume I have a devoted fan-base of readers who recall that my Mystic Medusa astrological scheduler predicted that my trip would be epically transformational and expansive. You remember that, right? Certainly. Well, my dear friends, the prophecy was legit!

It would be accurate to say that that experience brought me back to life. That is to say that prior to this trip, I felt like I had taken a few steps backward. Cancer, along with its massive baggage, had magnified my introversion and thickened my sorrowful disposition. I still found pieces of happiness in my day-to-day life, but inwardly, I felt scared, anxious, ugly and depressed.

When I arrived in Leavenworth, surrounded by a group of complete strangers, I felt those specific emotions firing off inside of me. I looked around and immediately noticed I was the only bald person. Shit, maybe Dr. Jeffreys was right. One should NOT climb rocks during chemo. These hairy jerks all look really healthy. I looked around again and tried to predict who would be my friend. That one looks like she works in finance--probably a bore. Some of these people are very sporty. Should I have trained for this? Am I about to get voted off the island? Maybe these New Yorkers will be my friends. Wait...nope, we're giving introductions. Soon they'll know I'm a Midwestern simpleton. 

This is how my brain works in a crowd of strangers. I become acutely aware of the Darwinian nature of our world and I start to wonder how I even made it to the egg as a sperm, because I am unquestionably the weakest and meekest of all humans. It's terrifying. Luckily, the next day I got to hold the ends of some of these strangers' ropes and I managed not to kill them. This is the fastest way to make friends, I've gathered.

My helmet fell off and was choking me out, but I still managed not to kill the climber.

Some experiences in life are just too voluminously magical to be contained by human language, so I will just say that the people family I met in Washington inspired me to great heights (literally and figuratively) and the time we shared touched me deeply. Over the course of the week, I heard many people's cancer stories, and I was shocked by my own reaction. Experiencing a story in the third person felt much harder than dealing with my own pain. Even now, I have tears rolling down my face as I think of my new friends and what they've gone through. On the third night, during our "campfire" talking circle, one participant--a single mom--shared how she had been trying to go on a First Descents trip for three years since being diagnosed with a brain tumor. As I listened, I felt the muscles in my chest tighten up through my neck and my nose beginning to run. I swallowed hard, attempting to push away thoughts of my own mother and the tears that were trying to flood in with the memories. I will not ugly cry in front of my new friends, I thought. I wanted to embrace this woman and sob on her shoulder, but that seemed entirely irrational. I wanted to talk to her and connect in some way, but what would I say? Hi. My mom had a brain tumor too. And now she's dead. So your story is making me really sad. I hope you don't die. That's awkward.

Another woman shared how her mother had supported her through her cancer journey, but shortly after she finished treatment, they were devastated by the news that the mom also had cancer. Doctors diagnosed her with a brain tumor, and she died three months later. I listened to this woman explain how her own healing process had been interrupted by grief, and how she had come to First Descents to begin that process again. I dug my body into the couch beneath me in a physical effort to suppress the emotions that wanted to spill out. I felt hot. My throat hurt from the ball of empathy banging around in my larynx. I did not expect this. This was not what I had come to do. I came to deal with this present situation I was in. Me, my cancer--not this lingering bereavement that still messed with me eleven years after my mother's death.

I managed to hold it together there on the couch that evening, but I kept a special eye on these women all week. I sensed that I needed to deal with this shitstorm of emotions that had caught me by surprise, but I had no idea how to begin.

On our final day, the temperatures in Leavenworth reached 100 degrees Fahrenheit. After several hours of climbing, we hiked up the loose rock face toward the summit, fumbling under the blazing heat of the sun. At the top, we all collapsed in the shade and scowled as our guides tried to coax us onto the rappel line. I scooted onto a massive hunk of quartz next to the woman who'd lost her mother. After a few minutes of small talk, I managed to say, "I'm sorry about your mom," and share my own story with her. When she looked at me, I saw the same mix of empathy and compassion I'd felt listening to her a few days earlier.

Despite the oppressive heat, we rappelled that day in honor of our moms. I didn't know I needed to do that, but I did. That evening, during our final campfire, we were asked to light a candle for those we hold in our hearts, who'd never get an opportunity like we'd had that week. I don't think my heart has hurt that much since I heard my mom take her last breath. I couldn't hold it together any longer, but it didn't matter. These people were my family and I didn't need to be anything but honest in front of them. I let the tears fall and the snot pour out of my nose like a tap, because apparently that's what happens when you no longer have nose hair. I thought back to the day I went in for an MRI and was diagnosed. I thought of lying in that imaging tube and believing I was reliving my mother's fate. I thought of how many times I have been FUCKING TERRIFIED during the last ten months and how scared my mom must've felt too. I thought of how she once told me to fuck off when she was sick, and how I took great offense to it. I thought of how many times I have wanted to tell people to fuck off this year, even though I truly love them. I thought, I'm sorry, Mom. I am so, so sorry.

When all the candles were lit, we were asked to turn to our neighbor and share our impression of them from the week. I turned to the woman next to me, the single mom with a brain tumor. This time, I did embrace her and sob on her shoulder.

Sending love and light to all of you. And your mom.

Woke Up Feelin' Like...

"My doom-proof platinum vest absorbed most of the radiation! In retrospect,  
I wish I'd have worn doom-proof pants, but you know us nudists."

 My hair can go ahead and grow back any day now.

I'd Like You to Liberate More Than My Arm

It's my first back-to-real-life Monday. It's the first alternating Monday since February 6th that I'm not cabled to an infusion bag with my ass glued in a plastic recliner. I'm not going to stumble home tonight feeling like I was roofied by Brock Turner disguised as a middle-aged nurse. I'm not going to wake up tomorrow feeling like I need a nap. Goodbye, metallic cottonmouth! Goodbye, vermillion pee! Goodbye, menopausal hot flashes! Most importantly, goodbye, dangly robot arm tube! (I credit my 2nd graders with that apropos renaming of my PICC-line.)

No more tube demons living in my arm.

 Today feels worth celebrating.

I deserved a celebration two weeks ago on my last day of chemo, but my doc's surprise recommendation of radiation treatment sucked the life out of my party. To be more precise, it sucked the life out of me. To be most precise, I wanted to hurl myself off a bridge in order to dramatically illustrate to my oncologist the adverse effects of her actions on my psychological frame of mind.

My trip to Washington had successfully distracted me from the sudden sketchy revision to my treatment plan, which I had hoped was a strange misunderstanding on my part. But when I came home, the story was lamentably the same. Dr. Jeffreys scheduled me for an appointment with a radiologist. I cried. A lot. And then I scheduled my own appointment with a second opinion oncologist at Froedtert's Medical College of Wisconsin.    

Froedtert's Dr. Fenske confirmed what Dr. Jeffrey's had told me: the standard of care for bulky tumors greater than ten centimeters is chemo plus radiation.

"Double turds!" I thought to myself.

Fortunately, Fenske didn't stop there. Radiation, he affirmed, would indeed decrease my chance of relapse, but only by 3%. Moreover, the long term survival of patients receiving just chemo versus those receiving chemo plus radiation was virtually the same. Considering how well my body had responded to the chemo and how great my scans looked, Fenske didn't seem to think radiation would do much more than the drugs had. He warned that the risks of radiation near my heart and through breast tissue could outbalance the 3% chance against relapse. The decision was mine, but he encouraged me to feel satisfied with the treatment I had already received and the incredible progress I'd made. "Worse case scenario," he added, "if--God forbid--it did come back, there are other treatment options ready for you. Radiation isn't your one and only chance to survive this."

This was exactly what I wanted to hear, so I questioned whether I had heard correctly. I'd spent three weeks trying to accept that radiation therapy was my inescapable fate and that I'd have to choose between probably getting Hodgkin's again or probably getting breast cancer later. I endeavored to imagine what kind of criminal fuckery I'd committed in a past life to deserve getting the rug pulled out from under me not once, but twice when I felt I was crossing the treatment finish line. I prepared myself for the humiliation of telling my school and my students and all their parents that I wasn't coming back to work, weeks after I had told them I was. But this Fenske guy was setting me loose! I suddenly felt ridiculous for all the 'nearly every day's I had marked on the mental heath questionnaire an hour prior.

Over the last 2 weeks, how often have you been bothered by the following problems? a) feeling down, depressed or hopeless, b) trouble falling or staying... ALL THE THINGS, EVERYDAY, GIVE ME A XANAX NOW.

So I left Fenske's office and called the radiologist and cancelled my appointment. I went home and drank tequila. And now I've spent the last week trying to convince myself that this is real--that for now, I don't have to take anymore drugs or get zapped by lasers. I'm still bald, and I still have a lot of doctor appointments on the horizon, but otherwise, I can start to remember what it's like to be a normal Danielle Lynne. A normal blue-haired, rock-loving, potion-drinking, apocalypse-obsessed Danielle Lynne. Oh, how novel.

  

LiveJournal 2017

I never actually had a LiveJournal.  Or a MySpace.  I didn’t get a computer til middle school and Internet was a luxury that only existed in my friend’s basement, where we’d falsely a/s/l our brains out in chatrooms as we fired sour punch straws into our mouths.  In high school, my dad finally got me a dial-up connection, but the rickety old mass of plastic and wires in our spare room was only fast enough to type book reports on Salinger and AOL message this punk rock kid for whom I had the hots.  That was after waiting approximately 20 minutes for Al Gore to start up the Internet, as it blasted space sounds across the house, broadcasting to my dad that I was not, in fact, asleep on a school night. Anyhow, this is just a disclaimer that the title of this post is 100% me being a poser.

I don’t have anything clever to say about cancer lately.  Since finding out my lymphoma is “no longer active”, my life has basically consisted of 1) feeling majorly entitled to eat donuts and drink wine 2) subsequently barfing a lot, and finally, 3) reevaluating my new found “freedom”, which actually isn’t freedom at all, as I am still obligated to finish chemotherapy, my hair has completely fallen out, my body still feels wonky AF, and my doctor now tells me she thinks I’ll need radiation.  Essentially, nearing what I thought was the end of this unusual journey has brought me more anxiety than taking the journey itself. 

Take this out-of-nowhere radiation predicament, for example: Remember when my doc surprised me with an extra 2 rounds of chemo back in April?  Her reasoning at that time was that 6 rounds of chemo, as opposed to 4 rounds plus radiation, was the “lesser of two evils”.  Radiation, she asserted, left more long term side effects and toxicity and increased the chances of getting breast or lung cancer later on.  Essentially, this doctor has been bashing radiation since I met her.  Yet in May, upon receiving my negative PET scan, she responds to me by saying, “now don’t be surprised when I send you to a radiologist after chemo—it’s protocol—but you're doing well, so you don’t need to worry.”  I guess in retrospect I should have clarified what I may or may not have needed to worry about, because yesterday, at my second to last chemo, this hoe says, “we’ll be making an appointment soon to meet with the radiologist, and then you’ll be able to determine your schedule for radiation. You will need to go everyday, Monday through Friday, for 3 to 5 weeks.”

She must’ve noticed the gnarled expression on my face and the flicker in my eye as I tried not to shake this bitch violently by her shoulders.  “You look surprised,” she said, timidly, with a slight quaver in her voice.  I screamed obscenities at her in my mind, but my mouth did not move.  After a few moments, I retorted with one of the billions of questions that sped through my mind:

“You just signed my medical release to go back to work, how am I supposed to work while going to radiation everyday?”

“It’s only 20 minutes per day. You can go before or after school.  Many patients work during radiation.”

Insert many esoteric ramblings about the physical and etheric life of a Waldorf teacher here. I’m not gonna get into it, but needless to say, this is the most overwhelming shit to blindside a teacher with as she is in the thick of preparing for her triumphant, cancer-free return after 6 months of medical leave. I questioned Dr. Jeffreys as to why I would need radiation if the lymphoma is no longer actively present in my body.

“Because your cancer was bulky, we like to radiate the site, just to deter any recurrence, which is likely within 3 years for those who’ve had bulky Hodgkin’s.  I mean, you’ll have to weigh the chances of getting another type of cancer from radiation against the chances of recurrence.”

Was she fucking kidding me?  We have known my cancer was bulky (large mass more than 10 cm) since day one.  Why, then, was this the first time she is bringing this up?  Why did she spend the last few months trash-talking radiation, just to inform me that she thinks I’ll need it? Why is this sweet little lady with the adorable British accent committing the most evil mindfuck of all time upon me?

I have a lot of theories about this:  Did she think I wouldn’t go through with all this if I knew from the beginning how long the process would take?  Are these western medicine creeps just stringing me along for more money?  Does she really believe I will have a relapse?  Is she being pressured by the clinic to refer patients to inside doctors?  It’s all verrrrrrrrrry fishy to me.

I kinda feel like just saying, “thanks for all the medicine, I’m gonna go do some eurythmy and inject myself with mistletoe and wait for the apocalypse to kill me instead.”  Cuz this is the anxiety that cancer gives me—it makes me feel like I have no control over my own destiny.  I can be a super healthy person mentally, physically and spiritually and STILL there is some evil disease that will try to kill me.  And then I can fight the disease with medicine, but still it might come back to try and kill me.  So I can fight those chances with radioactive laser beams, but then I might get more cancer, which will try to kill me.  And even if I don’t get more cancer, my friends and family will get cancer.  I’m not trying to be a dramatic nutcase—this is real.  Just last week my friend was diagnosed with breast cancer.  Prior to my own diagnosis, I used to take people’s cancer news in stride, but now it feels so much heavier.  It feels impossible, like we just can’t escape this volatile thing, no matter what we do.  And it’s not the dying I’m afraid of, but the not dying on my own damn terms.  It’s rude.

Anyhow, heavy mindfucks aside, I feel great right now.  I just arrived in Portland, I survived a four and a half hour plane ride upon which 75% of the passengers were snotting, screaming children under the age of 5, and despite having had chemo a day ago, I feel like I’m ready to party in the Pacific Northwest.  I head to Seattle on Friday, and then to the Cascades on Saturday, where I will spend seven days with a group of cancer patients and survivors, rock climbing in Leavenworth.  According to my astrological scheduler, the next ten days will be “super psychic, intensely volatile, great for growth and drastic moves,” and filled with “epic breakthrough ideas and zones” for “readily access[ing] [my] most innovative dimensions.”  Transformations await and I am ready.

Radioactive Tube Gloom

When I write words on a page it becomes apparent to me that I'm losing my shit. "Ummmm, nobody needs to hear that, Danielle," I say to myself 68 individual times as I hammer on the delete key with my Malibu Barbie manicure.

"Slightly alarming.  
Inappropriate.  
TMI.  
That is hilarious to you and exactly no one else."

I have ten million thoughts blasting through my brain on any given day and approximately zero of them feel sane to me.

It used to be that my only downtime was half an hour of meditative space I made every morning before I chased children around all day.  That, in retrospect, was a healthy amount of downtime for an Enneagram Type 4.  Now this free space lurks around my person at all times, threatening to swallow me up and chomp on my brains.  I can't seem to make proper use of it--there's so much of it that it disorients me.

It's not that I don't have things to do.  My days are kept pretty full with logistical cancer shit and more mentally-constructive pursuits such as reading, frolicking in nature, snuggling things, conspiring with friends, etc.  But every intermission between these activities feels like one thousand pounds of weight on my being.  Like I've come home from a tropical vacation to my agonizingly boring roommate, who has eaten all my TJ's snacks and wants to show me memes of Melania Trump. And the roommate is me, or rather, my mind that won't shut up.

Okay, so imagine that you don't have a job or eyelashes and are going mentally insane as a result and now you must get a PET scan which entails first of all, avoiding carbs for 24 hours 😩, and second, getting injected with dye that is so radioactive it comes in a giant metal syringe.

During the hour it takes for this junk to do its thang in your body, you have to sit perfectly still and silent in a room by yourself.  You mustn't fidget or perform any mentally stimulating tasks such as reading, for fear that the dye will accumulate in places it shouldn't.  You're simply left alone to enjoy an hour's worth of your own paranoid thoughts.  Fortunately, you just finished binge-watching The Handmaid's Tale. Once the poison has dispersed, you have the pleasure of laying in a tube for another thirty minutes with your hands strung above your head, so that your limbs go completely numb and begin to mirror your frame of mind.

It's a lot for a depressed wacko like myself.  I came outta that thing all super hangry and radioactive and wanted to nuke someone right in the face.  (I was instructed to keep away from small children and pregnant women for the rest of the day til my atoms stopped disintegrating or something.) My dad, who had driven me to the hospital, had conveniently wandered off, so I paced the halls looking for him in desperation.  I attempted to exit through the front doors, but got tangled in a mob of family members whose relative had died upstairs just an hour before. I begrudgingly listened to them rattle on with lament and I feigned puppy dog eyes, best as I could. Wickedly, I thought, "Yea my mom's dead too, please stop blocking the damn door."

I found Pops after another ten minutes of scouring the piddle-scented halls, but then I had to wait 9 whole days for the results of my test.

Day 9 is today:
Negative PET.  Complete metabolic response. No active lymphoma found.

I feel my sanity slowly return and I cry til my falsies fall off.  Fuck. Yes.