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.