Thanksgiving

I've noticed that cancer people like to celebrate cancerversaries: diagnosis, end of chemo, remission,"rebirth". These might all be the same thing, I'm not sure. My own experience of cancer has been so ape shit bonkers, I haven't had any psychic space left to mentally file my cancer dates. I don't remember when I was diagnosed or when I got my first biopsy--I just remember it was before Thanksgiving because the subsequent holidays and birthday were a total bummer. I know the date I was in the hospital only because I got so many preposterous bills afterward. Frankly, the dates aren't super significant to me, but as I navigate through another chaotic year as a Waldorf teacher, I bask in every singular difference from this year to last. On Tuesday, for example, as I bent over to pick Babybel cheesewax out of the carpet in my classroom (gawd, I need to write those fools a cease and desist letter on behalf of all elementary school teachers), I thought of how totally marvelous it is to reach toward the ground without losing your eyesight. Each morning, as I shake my student's hands at the classroom door, I think of the month before I took medical leave, when I was so weak I had to sit on a stool to greet them. I remember all the autumnal walks that were cut short last November by my minimal lung capacity, and it's safe to say this is the most epic level of gratitude I've ever felt on Thanksgiving.

So I guess this is the season of my own obnoxiously-titled cancerversary. It's kicking up a lot of emotions, both happy and somber. It's certainly generating a lot of unscripted crying.

In review, this year I did a lot of things I never thought I'd do:

1. I asked for help.
2. I surrendered.
3. I received chemotherapy.
4. I went out in public looking fucking terrible.
5. I uttered the words, "I'm happy to be alive."
6. I let a stranger wipe my ass.  ¯\_(ツ)_/¯
7. I got a 2nd tattoo. A cancer tattoo. (But not a stupid one.)
8. I developed a love and sympathy for cancer patients.

Most of these things still bring me a certain level of discomfort to admit, but the last item is particularly humbling. Prior to this year, I believed that cancer was just a manifestation of one's own terrible baggage--a total karmic thing. I felt invulnerable to it because of my own life choices, both physical and mental. When the universe cosmically bitchslapped me upside my face, I had to contemplate a lot of things that were bigger than myself. I realize now that surviving cancer isn't as simple as eating cruciferous vegetables or shifting one's consciousness. It's not something to shrug one's shoulders at and assume the universe is teaching cancer patients an important existential lesson. (Not that I have to tell you. You are probably not a heartless shrew, like I am.) Cancer is not to be fucked with. Cancer is a Demagorgon and if it doesn't kill you, it's definitely gonna kill Bob. I am so damn happy not to have a giant lump of cancer in my chest, but the bullshit doesn't seem to stop. There's peripheral neuropathy in my fingers and toes, there's painful degeneration in my spine, and now there are pre-cancerous cells in my cervix. I'm going in for surgery on my birthday weekend and I can't help thinking that this is crossing the line from karmic into RUDE. Regardless, today I am grateful. I give thanks for the chance to reexamine my own beliefs. I give thanks for my continual transformation as a human being on this earth. I give thanks for having been humbled. I give thanks for the absence of an itch. I give thanks for the immense love that is shown to me everyday on so many levels. I give thanks for the chance to celebrate a cancerversary.

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.

 

Hair Today, Goon Tomorrow

Remember my hair? It was nice. When I was a kid, I watched that episode of the Brady Bunch in which Jan buys a big, brunette, permed bouffant-looking wig and thinks she's hot shit, and I was like, totally feeling what she was putting down. In those early years of childhood, I drew a lot of pictures of myself with wavy, black, "Snow White" hair and imagined saving my pennies to buy a wig like Jan did. However, as I got older, I began to appreciate the soft, auburn qualities of my natural hair, and realized its super-straightness was quite conducive to maintaining perfect bangs, which is a look I have embraced for basically my entire life.

As an adult, I have never taken my hair for granted. On several occasions during my morning meditative shout-outs to the Universe, I have made a point of expressing gratitude for my tresses (as well as my more ethereal fortunes--I'm not a completely shallow twat).

When that first oncologist prick told me I'd need chemo and my hair would fall out, I thought, "No, that's actually impossible. My hair would never betray me, I have shown it too much love." That didn't turn out to be entirely inaccurate. Although I shaved my head in order to avoid traumatic clumps from adorning my pillow, my hair hasn't fallen out much.  It's definitely thinner, but continues to grow, and my husband has to give my a buzz every few weeks, which is sort of precious. Despite my bygone wishes to have a raven coiffure, I now pray every day that my hair does not choose to grow back a different shade or texture when this is all said and done. This is apparently common with chemo. I think it sounds very rude. Haven't I been through enough?!

You might be thinking, "But Danielle, your plethora of wig fashions are just so fun!" To which I would reply, "Yes, true, thank God for wigs. But do you know how long it takes me to get ready in the morning? Wigs are a real pain in the ass and don't sit naturally on your head all day, which brings about a great deal of paranoia for someone who is an image-conscious type."

I might also add that my eyelashes and eyebrows have almost completely fallen out of my face, so drawing eyebrows and gluing falsies every day is a real enterprise. Then, when I take it all off at the end of the day, I feel like Matt Lucas and don't want anyone to look at me.

When I first went to have my hair shaved off, I had my hairdresser pony it up into little tails before he buzzed it, so I could send it in to be donated. It sat in a bag on my kitchen table for a few weeks, and every so often I'd open up the bag and hold the bundle up to the light and watch it shine in the sun.  I'd pet it like a cute baby animal. Sometimes I'd flop it over my forehead to remember what my bangs looked like.

I admit, I never sent the thing to donation. I keep it like a creepy souvenir. I check on it often in its little bag home. It's just such a comfort to me--an old friend. I've thought about making some art project with it, but for now I just like to keep it close at hand, in case of some anxiety-driven emergency. Cancer seriously makes you weird.

Weirder.

Weirdest.

Dollar $pecial

The infusion room was bumpin' bumpin' today. I grabbed the first seat I saw in the middle cubicle section. I began to unpack my belongings--water bottle, thermos, celery sticks, Carrie Fisher's Shockoholic (amusing read, btw)--and realized I was about to regret my seating choice. I had unknowingly planted myself in the toothless and rowdy Bass Pro senior section of the cancer center. In between chomps of my celery stick I heard the man behind me proclaim that "all us sick bastards [were] gonna die," as the nurses nervously attempted to soothe him back into his recliner. "Well," I thought, "nothing like a truth bomb to get your Monday started." I listened for a few more minutes, but the fella's ramblings soon became wildly incoherent. The sweet lady in the chair next to him tried making small talk (I would guess in an effort to lower his volume and direct his conversation toward a single person, rather than the entire room), but she couldn't have surmised how enraged he'd become about the prospect of medicinal mushroom extract.

I shifted my attention to my own neighbor, let's call him...Duane. Duane had just withdrawn his Jitterbug from his pants pocket and was now chatting with a friend. Within the first 2 minutes of the conversation, I deduced that this friend was also Duane's local bartender, Gary (I didn't make that one up). Gary had apparently promised to run a dollar special on Coors Lite this week, but must've forgotten his word, because Duane was now tearing him a new one in the name of Miller Genuine Draft. "FUG YOUUU, YA SUCK ASSSSS." This exclamation slithered forcefully out of Duane's mouth about 20 more times before he hung up. I think he had probably had a few Coors on the drive over. It was a verbally violent conversation, to be sure, but remarkably, I think it ended on a friendly note. Duane said he was leaving now and he'd see Gary soon. 

Sun in Sag, Moon in Taurus

Blank stare, blank stare, blank stare.

Did you know that Sagittarians are deathly allergic to baloney? We are also made of fire and are brutally honest creatures. We speak our minds to the point of oversharing and are often awkwardly inappropriate. But no one can tell us we don't have integrity!

There is a reoccurring aggravation that keeps showing up in my life in different instances. I keep wondering if it affects me so deeply because of my birth place in the zodiac, or if I'm simply a human who fairly expects other humans to possess a crumb of virtue. I just want people to give me straight answers. I want my colleagues to do it, I want the president to do it, I want my doctor to do it.

On Monday, I had my fifth chemo infusion. I went into the appointment thinking I was on the home-bound stretch of halfway done--number five of eight prescribed infusions. I would be done with chemo by May.  As long as my scans showed no sign of lymphoma, I could have this PICC line removed and carry on with my life, just in time for summer.

Let me pause the story for a minute to iterate how unpleasant it is to have a tube permanently hanging out of your arm. I can't sleep on it. I can't bathe or swim with it. I can't shower with it unless I wrap my entire arm in Press'N'Seal. I'm not allowed to put my head below my heart in case I were to dislodge it. It is an awkward bulge under all my clothes.  When I wear short sleeves, everyone wonders why I have a lumpy sock on my arm.  It is a total boner-wrecker:

Just imagine how sexy I will feel this summer in all my translucent, pale glory (chemo makes me ultra-sensitive to the sun), sulking in a sun dress, sweating my balls off under a wig, with a tube dangling out of my arm, while I watch my friends joyfully jump off a pontoon boat into a lake.  This is all I could think of as I sat in my doctor's office on Monday while she casually remarked to me, "Now remember: we'll have you do a PET scan between your fourth and fifth round of chemo."  Fifth round?  I was told I would do four rounds and if all looked good, I'd be free, and otherwise I might to do radiation OR an two additional rounds.  I swear, I even have the notes written in the doctor's own hand to prove it!  "No, I'm sorry, you misunderstood. There was a lot going on when we first discussed this. Six rounds is protocol."

I was crushed. I've been doing so well. My numbers are great. I felt like I was on my way to early release for good behavior and suddenly someone decided to add two months to my sentence. Moon in Taurus set in. My moon sign does not like surprises. The optimism and fire of my sun sign ride smoothly on the stable, steady wing of my moon sign. Now the two were nose-diving into the dark abyss of melancholy that lurks in the back of my psyche.

I walked out of the appointment, into the infusion room. I tried to forget everything. I smiled at all the nurses and made small talk. I laughed at all the corny commentary from the neighboring old timers in the chairs next to me. But when my favorite nurse, Anita, grabbed my chart and came by to bring me my first dose of drugs, she must have seen the glazed look in my eye. Anita was the very first nurse I met when I came to Aurora Cancer Care.  She taught my one-on-one "Intro to Chemo" class back in January. That chilly Friday morning, as she ran through the potential side effects of each horrendous drug, I sat grimacing from the pain that was shooting through my left arm. After the teaching was over, she sent me for an x-ray and ultrasound and it was determined that I had a blood clot from my PICC line. Remember that story? Anita was the one that had to pull the PICC line out of my arm, much to the horror of my husband and father, who sat watching, not realizing that about two whole feet of bloody tube would be yanked from my vein. My weekend began with that adventure and ended with me going in the hospital and having heart surgery. (There are two more gorgeous scars we can add to my upcoming summer look.) When I didn't come in for my first chemo, Anita was really worried. She asked my doctor what had happened and when I finally came in a week later, she embraced me like an old friend. So, ya know, Anita and I have been through it. She's my girl.

"How'd your appointment go today?" she asked, unraveling cords from the IV stand. I went silent. Anita paused and looked deep into my gaze, and I couldn't hold back the tears. I told her through gasps of breath about the two surprise extra rounds of chemo. She sighed with a look of disappointment. "You're not crazy," she said. "That is what the doctor told you." She remembered that during our first meeting in January, I had mentioned doing four rounds, and it had struck her as odd.  She had told me that six rounds were typical protocol, but I showed her the notes that the doctor had given me. She said we should confirm that, but apparently the subsequent blood clot/lung fluid/heart suffocation chaos must have distracted us both from revisiting the subject. So here we were--on Monday--left with nothing to say, just staring at one another with an identical look of discontent.

I went home that afternoon and buried myself in bed. Thankfully it began raining, which is a melancholic's favorite weather condition. I gave myself 24 hours to stare at the wall and hate everything. When my time was up, the sun came out and I went for a run. I ate a tostada. I rubbed my face on my cat's fur. This is how I carry on.

Last week, I had 39 more days ahead that I'd need to fill with optimism. Now I have 95. Let's hope there aren't any more surprises, or I might not be willing to endure the journey.   

Hypothetical Thought Bubbles

I am having an experience.  The experience is that I got sick, and this corresponded to me getting diagnosed with a disease, and the diagnosis began to dictate a few events in my life: 1) I took medical leave from work.  2) I have to go to the doctor every week.  3) I have a tube thingy hanging out of my body. 4) I got a dramatic haircut and sometimes I put wigs on.  5) I have to be careful about keeping healthy and avoiding germs.

These are the facts surrounding my current experience.  Maybe you have similar things happening in your life.  Maybe you are pregnant and facts one, two, and/or five ring true to your current experience.  Maybe you have a spontaneous personality and can relate to fact number four.  Maybe you aren't presently having any of these experiences, but are dealing with some other out-of-the-ordinary event in your personal timeline.  It's normal, right?  It's life.

Lately, I've been trying to understand this insane reaction I have to the word "cancer".  I seriously hate it.  I hate the word, I mean.  I actually don't mind the thing itself.  The thing itself is an experience--I have respect for it.  But the word is so gross.  I don't want to be associated with it.  I don't want people to say it in my presence.  Before I had to claim it as a thing belonging to myself, I formed a very strong negative opinion about it.  I never liked the power behind it.  I don't like the image I have of it.  I don't like all the proudly bald, pink ribbon-wearing ladies marching for a "cause".  I don't like how people who have it are supposed to fight it and beat it, like it's a terrorist.  I just hate the word cancer like I hate the phrase, "Make America Great Again."

Recently I started to notice my subtle, subconscious irritation toward people (particularly strangers) who are sympathetic to me having cancer.  For example, I have been suspect of anyone who gives me puppy dog eyes or lingers too long in a hug.  I am also annoyed with anyone who tells me I'm still pretty.

Last week, a random parent from school who I have never met made a meal for me.  She wrote the sweetest note about how brave I am and how people are rooting for me.  It was the kindest and most generous gesture, and yet I felt extremely perturbed.  I thought, "What makes me more brave than anyone else living their life?"  Also, "Do you think I'm so withered and sad that I need a stranger to tell me I'm brave?" And then I thought, "Why I am so irrationally offended by this?"  Is it possible to be brimming with gratitude and resentment at the same time?

I've meditated long and hard about why I am inclined to scowl at people who are nice to me during this time in my life.  What I've realized is that my ego is terribly afraid of being seen as a weakdick.  I envision these fantasies behind every compassionate glance or warm gesture.  I imagine what people are imagining about me.  I imagine that people are associating me with that image of cancer that I despise, the one I need to be brave in order to beat.  I imagine they are pitying this once beautiful, young girl who is gonna lose her hair and puke after chemo, and who won't have babies cuz that shit fucked up her ovaries.  I imagine they think I might die--I might become some gray, skeletal figure with tubes hanging out of me before I take my last breath and my poor husband of only four years has to say goodbye.  And I get so angry because that image belongs to the word, but it doesn't belong to me.  I realize I am being slightly paranoid and insecure here, but I know I can't be the only one who has visualized outlandish, worst-case-scenario stuff when finding out someone has cancer.  I know it happens and I simply am not interested in starring in these hypothetical thought bubbles.  

I need everyone to know I'm OK.  I'm not gross.  I'm not sad.  I'm not dying.  I am just living my life according to the current facts, just like everyone else.  If I feel that people know that, then I can tone down the subconscious sass I have toward their charity.  I truly am grateful for the love.  I want to feel it fully and completely, without all this hostility.  
   

Cookie Cat! He's a Pet for Your Tummy!

I write to you from the depths of a brutal sugar coma. I'm not even vertical. I'm typing this on my phone from under a pile of covers. I'm actually drunk texting my blog.  This condition stems from cartoons and special occasions. I'll tell you about the later, first. Yesterday Dan and I celebrated our fourth wedding anniversary, so I decided I was entitled to break a few dietary rules. We went to a little Italian joint and I delighted myself with a bowl of pasta (I've been avoiding gluten), a bottle of wine (I've been avoiding alcohol) and a giant hunk of tiramisu (I've been avoiding gluten and alcohol and sugar). No regrets, dude. I would've died happily with my face in that fluffy pillow of tiramisu if that's what God had intended--it was exquisite.

However, the fetal position I now find myself in can't be blamed entirely on four years of marriage.  Earlier in the day, prior to my anniversary date, I had a fantasy baking date with my friend Laura (who incidentally made our wedding cake, so it was like our confectionery anniversary, technically). Aside from Laura's general savoir-faire and dessert wisdom, she has supreme knowledge of what's good the world of cartoons. Around the time I took medical leave from work and got super sick, she introduced me to Steven Universe-- a half human, half alien super hero adolescent with a show named after him. When I went into the hospital in February, I genuinely missed my friend Steven. I know that sounds very zombie millennial of me, but I swear this cartoon friend is so endearing, you would love him if you knew him, too! I felt connected to Steven after the very first episode of the series, in which he eats a freezer full of Cookie Cat ice cream sandwiches in an effort to hone in his super hero gem powers. The dude is stoked on cats and ice cream and his belly button is made of rose quartz--how could I not love him?!

Anyhow, back to my sugar stupor narrative. From the first time I saw Steven Universe, I'd get this hankerin' for Cookie Cats each time I'd watch an episode.  A few weeks back, I thought I might give in and treat myself to an ice cream sandwich, but as I stood in the frozen section of the grocery store, peering through the frosty glass, I realized an old-school rectangular sandwich just would not do. I needed the power of Cookie Cat. I left the store without any ice cream--if I was going to cheat my cancer diet, I was only going to do it for the cat.

When I have a dessert dream, I never let it die. I spent a lot of late nights googling "cookie cats" until I found this perfectly wacky YouTube video:

I texted Laura the link and told her we needed to make this fantasy a reality. Yesterday, we made it happen.

After a few chomps of cookie cat, I was buzzing from head to toe.  It goes without saying that I had already eaten my fair share of cookie dough scraps during the baking process, and had licked the spoon during the ice cream portion of the assembly.  Cookie Cat was giving me super human powers!

The moral of this blog post is that if a Cookie Cat gives you heart palpitations and you go ahead and carry on with your day by eating more sugar and alcohol at dinner time, you will wake up at 4am with a terrible headache and you will no longer have super powers. That is all.  The end. 

The Red Devil

This past Monday was my third time receiving chemotherapy.  I began early last month and I go every other Monday to get the drugs.  I will need to receive eight doses of chemo before they put me through another radioactive scan and see if I'm free and clear of lymphoma.  That should be around the end of May.  I'm just over a fourth of the way through this strange experience.

On Chemo Mondays, I start my day by getting blood drawn, so that my oncologist can check my numbers before sending me off to the Infusion Room.  So far, over the last five weeks since beginning treatment, I've managed to keep my numbers pretty stable, aside from my white blood cell count, which is always expected to plummet when a patient receives chemotherapy.  ALL <----seriously, ALL my swelling has gone down in my chest and my itching and night sweats have completely subsided.  I'm sleeping at night again!  The relief from the lymphoma symptoms far outweighs any negative symptoms I've experienced from the chemo.  My adorable doctor always giggles with joy at the end of my appointment and gives me a big hug.  I imagine she is just delighted to have a patient who isn't an old, crotchety mess.   

After meeting with Dr. Jeffreys, I head to the infusion chair.  First I get a bunch of anti-nausea meds dripped into me, and then I receive four different chemo drugs through my PICC line, one by one.  The first drug I get is called Doxorubicin, commonly referred to as the Red Devil.  A nurse administers it by hand through a giant syringe.  The stuff is bright, blazing red, so you can really feel at peace about it going into your veins.  Every few squeezes, the nurse pauses to check for blood return in the syringe, to make sure the drug is going into the vein, rather than the tissue.  If the Red Devil gets into your tissue, it will rip you to shreds.

This past week, I happened to have the pleasure of being waited on by a nurse who seemed to have been borrowed from another hospital.  She was quite awkward and rather tactless and when my dear aunt, who was joining me for the first time on a chemo date, asked about the logistics of the Red Devil distribution, Nurse Beth told a very comforting story about how this drug once burned a hole through the linoleum when a nurse dropped it at her last job.  Insert blushing, wide-eyed emoji here.

Nurse Beth was also concerned that I understand the gravity of having a low white blood cell count.  Her advice to me was as follows:

1) Don't leave the house.  2) Don't let people into your house.  3) If you do let people into your house, tell them to wash their hands before you even say hello to them. 4) Never go to the grocery store.  5) Don't eat any fresh fruits or vegetables: "Think about it," she said. "Those things grow in the ground...with dirt!" 6) If you have to eat a piece of fresh fruit, make sure it has a peel on it, and make someone else peel it for you.  7) You're better off eating cooked fruits and veggies.  Her example: "You can eat a cherry pie, but don't eat fresh cherries."  8) Don't touch any plants.  9) Stay away from fresh flowers.  10) Go ahead and die of nature deprivation. 

 I loved Nurse Beth. 

The whole Chemo Monday process takes around 5.5 hours.  When I get up from the chair, I feel super hungover, like I need fizzy water and large pizza, STAT.  I go home and take some vitamins and a long nap.  By the next day, I'm basically back to normal, aside from having a weird, sour, cottony feeling in my mouth.  I still have a lot of energy, and have been taking advantage of the mild weather by going on daily runs by the lake.  I am reluctant to give up my raw veggies and outer-worldly adventures, but I try to remember what Nurse Beth told me, despite feeling perfectly fine.

High Fructose Cancer

There are many silver linings to having cancer.  This week's cancer blessing came in the form of my body hair never growing back after shaving on Monday.  I am one silky lady!  I keep inviting Dan to stroke my armpits.  Other perks include justified napping, exemption from cat litter duties, and receiving care packages.

For the record, I am fluent in all five love languages, but receiving gifts is probably my strong suit.  I have been given so many sweet gifts since my diagnosis: owl pajamas, flower bouquets, a can of sardines and an orange, knife earrings, a cat painting, essential oil, jars of honey, frankincense, a book of haiku, tiny felted gnomes, a purple snail, remote Reiki, a candle made of kitten toots, snap pea crisps, a necklace etched with French profanities, delicious home-cooked meals, a salt lamp, and a string of heart garland--to name but a few!!  Oddly, the most common gifts I receive are coloring and activity books.

 Because I'm 5.

Nearly every week that I go into the Cancer Center, the nurses send me home with a care package put together by some local organization or school.  Last week I got a pair of fuzzy socks, a tube of chapstick, a pencil, and an assortment of terrible snacks.  Now here's where I turn into an ungrateful asshole.  Why are my chemo nurses giving me care packages full of Tootsie Rolls and Kit Kat bars? Why do all the snacks in the infusion room have high fructose corn syrup in them? Why are all my phlebotomists 300 lbs?  Why did my nurse offer me a Pepsi my first night in the ER?  Why am I more concerned about the effects of sugar than my dietitian?  Whyyyyyyyyyy?

These are the questions I ponder on the daily.  I get myself kinda worked up.  After I leave the Cancer Center, I always stop at the grocery store across the street before I head home.  I stand in line with my basket of organic kale and pumpkin seeds and hemp milk and I look at the overflowing carts ahead of me.  I get reeeeal judgmental.  "God damn Velveeta cheese!" I mumble.  "For heaven's sake, six boxes of Little Debbie!" I think disdainfully.  It's hard not to be mad that 17 years of vegetarian eating and general enthusiasm for healthy living did not save me from cancer.  I like to take it out silently on the shoppers in front of me, momentarily assuming that despite eating Hot Pockets for dinner 7 days a week, God has granted them immunity from disease and has instead chosen to strike me down.

By the time I pay for my groceries, my sensibility is restored and I soften to the idea that no one's life is free of hardship.  Velveeta-eaters have their own problems, cheese-derived or otherwise.  I remember the silver linings and I accept that this is my path.  I get the chemo, I eat the kale, I reject the Kit Kat, I count the blessings.

Friendship Opiates

I haven't had much to write about lately because luckily nothing has tried to kill me or ruin my life in the last two weeks.  On the contrary, I've had a lot to smile about.  I've just completed 13(!) consecutive days of extraordinary friend hangouts.

I have always prided myself in maintaining abundantly magical friendships, but having cancer has truly solidified how many outstanding people I have on my team.  I've had visits from Kindergarten era BFFs, punk rock era HS BFFs, Anodyne Coffee BFFs, NYU BFFs, Waldorf School BFFs, and used-to-be-Dan's-now-all-mine BFFs.  I've frolicked by the lake, taken super long walks in the sunshine, posed in a rebel photo shoot, gone to the movies, eaten my weight in tacos and falafel and snacks, hung out with cute dogs and cats, gossiped, gone on field trips to the mall, giggled in 4-way FaceTime chats, learned how to weave, laughed my face off, and most notably, gained back 5 lbs of lost hospital weight after eating three NY bagels with butter and cream cheese in 24 hours (cinnamon raisin, everything, and multigrain oat).  I have my incredible friends to thank for these adventures.

In addition to all the visits I've received, I have also had an overwhelming amount of old friends reach out to me from afar via text, email, Facebook, and Instagram.  Like...in the most beautiful way possible.  Friends just asking if I'm doing all right or if I need anything, and just letting me know they are thinking about me.  This is the true blessing that comes with hardship--all the love you have shared with every person you have befriended, reflected back to you at one time.  It's like, whoa, damn, I guess I've lived a good life.  And then your heart explodes. But not literally this time.

What I'd like to conclude after these 13 days of shared experiences with the people I love the most, is that friendship (and warmth, and nature and sunshine) truly are the best forms of medicine.  It feels so fucking good to smile.  So. Good.  I had my second chemo session yesterday, which technically means I'm finishing my first "cycle" this week.  I definitely feel a little wonkier than I did the first round, but that could also have something to do with my extremely poor decision to pound an iced coffee while receiving chemo.  Hot tip: coffee and chemo and menstruation don't bode well for the tiny body.  I think you get my drift.

This is also the week I get to wait for my hair to fall out, which might be hellishly traumatic, I can't tell yet.  I have really enjoyed taking on this buzzcut rebel chick persona.  I'm trying not to go off the deep end, but when the hell else will I have a chance to be so justifiably wild?  I stopped wearing bras (mostly cuz they bother my incision, but we'll pretend it's cuz I burned them all).  I put up a "We Back the Vadge" sign in my yard in response to the neighbors' "We Back the Badge" signs that went up right after all the summertime killings of unarmed black men by the cops.  I have developed quite  a no-nonsense, GFY* attitude toward anything or anyone that isn't pure or true.  I even thought about piercing my septum again when I walked into Body Ritual with some friends last week.  Then I had flashbacks to all my Dutch classmates calling me "De Stier" (the bull) and I changed my mind.  This rebel still has feelings.  If I lose all my hair this week, you'll all just have to settle for my wig personas, which are slightly sweeter than bootstomping, skinhead DLynne.

*GFY is an acronym I'm really trying to make happen: Go F*ck Yourself.  As in, "Mr. President, kindly GFY."

The Upswing

Last week, the Universe kinda made me its bitch.  I wasn't really into it, but sometimes a gal needs a funky new perspective on life, I guess.  Near death experiences are one way to expedite that.

Once the ol' heart and lungs started functioning again last week, it was back to business.  Monday was booked solid:

1. blood test
2. oncologist appointment
3. first chemo session
4. haircut
5. ladies date   

Chemo was surprisingly chill.  I got to sit in a big recliner and sweet nurses brought me pillows and warm blankets.  I brought a million things to do and read, but instead spent the 5 hours passed out, drooling.  It was the best sleep I had had in many weeks.  I guess subconsciously I had this feeling of crossing the finish line once I finally made it to chemo.  As soon as I landed in that chair and got the drugs all plugged in my arm, I was donezo. 

I made it back home Monday evening with a little time to collect my thoughts and wigs before heading to my hair salon.  My beloved hairdresser, Josef, had arranged an after hours time slot for me to come in a get my head shaved in peace--just the two of us.  We banded up little ponies of hair all over my head, and off they came.  When all was said and done, Josef and I concurred that I had a pretty great head underneath all those silken tresses.  I looked in the mirror at my buzzed head and felt really fucking awesome.  I looked beautiful.  I looked tough.  I looked free.  I had expected to cry, but instead I was beaming. 

After the buzzing, I tried on each of my wigs and Josef gave them each a little trim 'n' fluff.  When he asked which one I wanted to wear out, I said neither.  I am gonna flaunt this buzzcut til it starts to fall out.  It's too good to waste.  (Except on really cold days.)

Now might be a good time to retract some of the things I said in my previous post, Shit I Ban You From Saying to Me.  Buzzcut Danielle is beautiful and punk rock and suddenly into scarfs and shit.  But the ominous truth is that in a few weeks, I could look less like Eleven and more like Larry David.  So, I grant ye permission to inflate my ego for now, but once my shit starts getting patchy and I have to hide away under wigs, everyone's gotta STFU again.

XOXO,
Danielle Lynne     

Soda Pop Lung

So I head into the ER Monday night, trying to play as cool as one possibly can when she's checking herself in for emergency cardiac surgery.  I'm told I will be watched closely over night in the ICU, and will head to the OR at 6am to have a pericardial window procedure.  The surgeon will cut open part of the pericardium (the sac around my heart) and allow the fluid to drain through a chest tube, which will hang out of me for several surreal days.

Now as an extra bonus, my ER x-ray shows that nearly 3/4s of my right lung is also surrounded by fluid.  Thus, the surgeon recommends that after the pericardial window procedure, I would also need to undergo thoracentesis--a procedure which drains the fluid from the space between the lung and the chest wall through a catheter inserted into the patient's back.  Oh, AND I still needed that PICC line installed again.  Basically, I had four long days of mutilation ahead of me.

In moments like this one, I really start to question the purpose of my human existence.  We are souls that incarnate into this physical realm to express and experience.  But it's sort of bogus, right?  Sometimes I feel like my poor little etheric body is like, "I hate it here, just let me die already." And I'm all like, "No!  Society tells me I have to fight to stay alive and live life and maintain relationships and shit!"

When I came out of surgery on Tuesday morning, it was the closest I have ever felt to the threshold.  I felt so much pain that I wished I had just died during surgery.  I heard the nurses calling my family in and I just kept moaning, "No no no no no." You know how cats crawl under the porch to die, so they can be alone?  I needed a porch.  I wanted to be alone so I could just give up.

I spent Tuesday draining Kool-Aid out of my heart sac, and Wednesday I had the pleasure of getting my lung juiced.  Here is a visual aid:
  

                                                                           Before                                                                    After

They literally drained almost 1.5 liters of fluid from my right lung.  When they weighed me that night, I was 5 lbs lighter than the day before.  That's soda a lot.  I felt like I had been hit by a truck, but I could breathe again!

Tonight I am happily at home with my dudes, my cats and my own pillow.  The doctors are giving me the weekend to recuperate and allow my wounds to heal before starting chemo on Monday.  Last week at this time, chemo was the big scary thing on the horizon.  Tonight, it feels like anticipating a visit to the day spa.

If You Think That Hurts, Wait Til Tomorrow

On Monday morning, I began writing the above blog post, whining about how terrible my weekend had been.  I paused after a few paragraphs because I had to run to an appointment--my oncologist had ordered a Pulmonary Function (lung) test and Echo (heart ultrasound) to make sure that my organs were strong enough to endure the impending chemo.

I never got a chance to finish the post, or to mention that in addition to the pain I was experiencing from the blood clot, I was having very hard time breathing that weekend.  Truth be told, I had phoned the cancer center on Sunday, asking the after hours on-call doctor if I would survive until chemo began on Wednesday.  The doctor had assured me I would be all right, and could soon look forward to relief from swelling once the chemo began to shrink my lymph nodes.

Flash forward to Monday afternoon:  I had just arrived back home from my heart and lung tests and I was completely worn out.  I eagerly peeled off my jeans and shuffled to the couch, collapsing into the pillows.  The phone rang and it was Dr. Jeffreys, my oncologist. The cardiologist had just called her back with the results of my Echo.  It had revealed that I had a great deal of fluid around my heart, constricting the organ.  I would need to go to the ER immediately to have the fluid drained.  I gazed blankly at pattern on my pajama pants which I had just been so relieved to change into.  "Are they going to cut me open?" I squeaked at Dr. Jeffreys.  She paused, and I knew the answer.

Shit I Ban You From Saying to Me

Within the next 10 days, I will reluctantly begin chemotherapy for Hodgkin's Disease.  I am told that within 2-3 weeks of treatment, I will begin to lose my hair.  I'll need to shave it off before then so it doesn't start "falling into my food" or put me in other embarrassing scenarios referenced by my oncologist.  Gross.

Today Dr. Jeffreys told me that without chemo, I'd have a few months to live.  There is some insane part of me that would almost rather clutch to my ginger-fringe identity than save my own life.  Because who the hell am I if I'm not this image I have spent so long crafting?  Who am I if I'm some bald, withered vessel pumped with poison?  Some of you would like to remind me of all my other remarkable assets, for which I am very grateful.  But I also need the space to absolutely hate this shit. 

So here is a list of shit I ban you from saying to me:

• Bald is beautiful. (See custody-battle era Britney if you don't believe this statement is complete bullshit). 
• You'll look so punk rock.
• I have an attic full of turbans for you.  

• It'll grow back.
• You have a tattoo, so you'll look cool with a shaved head.  
• Think of all the fun scarves you can wear!
• Now you'll look like my baby. #twinning
• This is temporary.  
• You'll be even prettier without hair.  
• Dan is gonna love rubbing on that bald head. (Ew.)
• Just buy one of those hats with rastafarian dreads attached. 😑
• It's only hair.

Alternately, just tell me that you love me :)

Mekka lekka hi, mekka hiney ho!

An Honest Post from the Pits of Despair

Yesterday I met with a new oncologist, Dr. Sana Jeffreys, who works out of Aurora Cancer Care in Kenosha.  I found her sort of by magic after oncologist #1 threw me into a fit of rage and made me swear off Western medicine FOREVER.  Dr. Jeffreys gave me a tiny inkling of faith that not all allopathic doctors are messengers of Satan. 

During the time that I had been seeing the first oncologist, Dr. Treisman, I began taking a number of homeopathic remedies prescribed by my primary care doctor, Dr. Kamsler.  My rebel hippie heart had hoped that these remedies would work fast enough that my CT and PET scans would come back miraculously void of cancer.  I had been reading about the evils of chemotherapy and radiation, and had decided I would not be taking part in that toxic scam.  When Dr. Treisman called me "stupid" for asking if he could recommend an alternative to chemo, it empowered me all the more to throw my fist in the air and say, "fuck the system".  I came home that day and jumped on my trampoline for an hour with Refused's Rather Be Dead blasting from my speakers:

Rather be dead than alive by your social values

Rather be dead than alive by your tradition

Unfortunately, this actual feeling of death and mortality has been looming heavily over me lately.  When I was still teaching, it was easy to ignore a lot of the physical pain and discomfort I felt on a regular basis.  No time to cry when you've got three boys wrestling in the back of the room and Ana's got BabyBel cheese wax stuck in her hair.  But now that I've stepped away from my job, reality has set in that I have a massive lump swelling out of my chest.  I'm short of breath and veins bulge out of my neck and ribcage where they shouldn't be.  I have night (and day) sweats so bad that I sleep on towels and change costume multiple times a day.  And perhaps the very worst thing is that I itch--head to toe, inside and out, nonstop, all day, everyday--so that I cannot get even a moment of sound sleep.  

Yesterday I had to admit that I don't have time for my alternative dreams to work.  Hodgkin's Lymphoma is curable with chemotherapy, but if I choose not to do it, I won't have a long life ahead.  Anyone who knows how deeply melancholic I am can attest to my casual attitude toward death.  But I don't want to die a sweaty, itchy mess.  I don't wanna die with body builder veins protruding from neck.  I wanna die with my fucking fist in the air.  I wanna die in an apocalypse hurricane.  I wanna die from spontaneous combustion.

So I'm not ready to say it yet...but I'll do the thing.

The wishes of the soul are springing
The deeds of the will are thriving
The fruits of life are maturing

I feel my destiny
My destiny finds me
I feel my star
My star finds me
I feel my goals in life
My goals in life are finding me
My soul and the great world are one

Life grows more radiant about me
Life grows more challenging for me
Life grows more abundant within me.

Rudolf Steiner