Infusions 12 & 13

My nails are growing out. This is good. During the summer, the Red Devil lifted them off their beds, so that I risked losing them. I still don't have good use of my nails. I can't yet peel an orange or pry open box lids because they are still detached from half of the bed. When I try to be adventurous, they feel like they're going to snap in two. But they continue to grow in nice and pink, and I will have full use of them very soon. I predict my nails will be the first affected body part to return to normal post chemo.

People say I look good. They say my skin color is healthy, that I don't look sick.

"Shhhh... Taxol. It's my little secret," I reply.

The drug gives me a slight tan. And if you review the blog photos and compare my skin tone against those of my friends, you will see I look very much like Donald "grab-em-by-the-pussy" Trump. I'm orange.

Infusion 12 was just a puny Taxol treatment. My neutrophils were down to 900 (the carboplatin is doing it's job of bombing my body), but it was high enough for the Taxol. But unlucky infusion 13...

My neutrophils had plummeted down to 500, so I was rejected. Oh carboplatin, whyyyyy??? Why are you such an asshole?!

I was given the same spiel to avoid crowds, stay healthy and wash hands and then handed more yellow masks to wear in public and sent home. Once home, I immediately called my breast surgeon's office. Surgery is typically scheduled four weeks after the final chemo infusion and with the rejection of unlucky 13, that meant one thing: my chemo would be extended not by one week but most likely two (I figured since it took two weeks to get my neutrophils up to baseline the first time I was stamped NEUTROPENIC, I would see the same trend again).

Originally, my final treatment was supposed to be on October 19th. Then it moved to November 2nd. Now we were looking at November 16th. I am trapped in a never-ending evil cycle. Pause, rewind, repeat. 

FUUUUCK!!!

Infusion 11

Infusion 11 was a big one (a carboplatin/taxol combo) and marked the beginning of my seventh cycle. I also received a very thoughtful gift of a heart-shaped rock found in Lake Como, Italy that has traveled to my nightstand. My neutrophils remained the same at 1,100 from the previous week, but that carboplatin is a complete asshole and likes to bodyslam me into the pavement.

Carbo is the one responsible for my nosebleeds, mouth sores and anal fissures. I held the bloody nose and mouth sores at bay with daily neti pot rinses and dabs of GelClair on sensitive areas of my tongue. Another purple blister swelled to the surface on the inside of my mouth, but since there was no pain, I could care less. Unfortunately, my butthole wasn't so lucky. Anal fissures number 4 and 5 have come and gone. Damn you, carbo!

I haven't spoken much about how it feels to be entirely hairless. My head senses everything: spiderwebs, flying insects, the first raindrops before they hit the ground. I had no idea how much heat and sweat would come off of it. When I wake in the morning, sometimes my pillow is damp. Most of the time, my scalp feels soft and clammy, almost amphibian-like. But it's far more than that.

When I blink, my lids stick together for a microsecond before releasing. My eyes are weepy and constantly get debris in them. My vision becomes easily blurry. Even with glasses, it is difficult to read for long periods of time (this might be due to the chemo rather than the lack of eyelashes).

I have to guess where to pencil in my brows and I don't always get it right. If I bend my head downward, my nose drips. On paper, on the floor, on my food. I have to be diligent about blowing it.

And then, of course, there's the lack of hair down below. And when you consider the female folds, it gets really interesting. Pee goes everywhere. When I sit on the toilet, I have no idea if it will release in the front or the side or the back. It's like a wild hose let loose on the lawn. And when I wipe, I frequently get it on my hand.

Everything is bald. Everything is sticky.

I'm a newt.

Infusions 9 & 10

I’m having a difficult time keeping up with all the public shootings. I emerge from my chemo haze to hear about riots in Charlotte from another police shooting and a child shot and killed by another child (and his funeral of superhero-costumed classmates). It’s all so tragic.

And now we have clowns???!!! Clowns piled into cars, armed with guns and chainsaws, clowns attempting to abduct children and descend upon schools, clowns robbing fast-food restaurants, clowns terrorizing people with horns and gun emojis. And the public’s response: police arresting clowns and interrogating children who have sighted them, moms kicking clowns, schools closing to avoid clown attacks, mobs armed with golf clubs, hockey sticks and shovels to hunt down clowns.

One clown posted a photo of himself holding a sign in front of an Oregon school. The sign was succinct and ominous: “We are here.” And indeed they have arrived on the West Coast. I received an email from Portland Public Schools two days ago. The school district stated that they are working with the Portland Police Bureau to monitor the situation and—most importantly— that social media is not the best source of information. Imagine that. 

But in what world are public shootings normalized and clowns are not? And how am I missing all of this??? 

So many major events and life changes have occurred since I began chemo in the spring. It feels like everyone's lives have been fast-forwarded on a hyper-speed film reel, people jumping and scooting around like harried stick figures; the sun and moon arcing through the sky like the second hand of a clock; the shadows of clouds billowing and evaporating dramatically across rooftops, parks and trees; Portland's flowers synchronized together, opening and closing to mark each day.

Meanwhile, I move in slow-motion, standing in the bathroom naked and hairless. I look into the mirror with heavy lids and a slack jaw and pull a single hair off my sparse brow. It rests on my fingertip and I blink. I sluggishly turn my finger over and watch that part of my eyebrow fall into the sink.

Then all of a sudden, everything outside is brown and yellow and wet.

Infusions 9 and 10 were reduced doses of Taxol. I'm still neutropenic but able to have chemotherapy until my neutrophils go below 800. I was at 600 when I had to take a break. I will receive the regular dose when my neutrophils increase up to 1,500. I'm currently at 1,100.

With this second half of my treatment, the nurses give me Benadryl just in case I have an allergic reaction to the drugs. In some of the pictures my eyes are droopy and my smile is crooked because I'm completely high. And in others, we simply (ahem) clowned around. Don't report us to the authorities!

I've been absent from this space

because I have a bad case of Chemo Brain. I'm forgetful of everything. I've resorted to making lists and then I forget to review those lists. I save emails and then I forget to reply to those emails. I walk upstairs with the intention of grabbing a specific item, but I become distracted and do something else entirely. It's like my brain sits on a dusty shelf of some mad scientist's laboratory, pickled in a chemical brine. Which, in fact, it is.

Writing is difficult, but I don't mind that I'm shutting down. Like a toddler, I meander aimlessly yet happy. There is only the present moment. I see something and if it pleases me, I pick it up. If not, I walk on by. I forget most planned tasks until, in the moment, I remember what I need to do--and then only if it appeals to me. I am shutting down. On the rare occasions that I have my wits, this decline scares me. Most of the time it doesn't. I'm very content.

My bad days are still rough. When I begin to feel the descent into the tunnel, my initial thought is always, Oh crap, oh crap, oh crap, I'm fading, I'm fading. Out of nowhere, a strong, heavy hand pushes my head down, forcing me to sniff the ground like a puppy that accidentally peed on the rug. It's difficult to stand up straight. I'm ground meat being stuffed into a sausage casing. And so I crawl into bed and wait for it to pass.

I'm in the tunnel right now. Writing this blog post is a welcomed distraction. While the whole world dances on the balcony and swings from the chandeliers, I need to lay on the dank floor in the boiler room with the rat droppings and dead cockroaches. Just for another day. I'll reemerge. Like I always do.

Infusion 8

I have six hairs on my left eyebrow and four on my right. I also have an eyelash fiercely clinging to my right upper lid. It's the final one and it looks like a claw. When I asked Jason if he had noticed it, he casually remarked in between bites of food, "Of course and it looks weird."

I'm trying hard to keep that eyelash just so it continues to bug him.

(Just now I asked Jason if he liked my eyelash and I blinked a few times to make him notice. His response: "Don't even do that to me.")

Part of my role as patient is to be a bit bothersome. Jason is a nervous caregiver. For good reason, however, I'm tired of being housebound. I tell him he's locked me in his pumpkin shell. I'm also aware that I need to make sure he doesn't die of a heart attack over this entire ordeal.

Whenever possible, I make Jason leave to blow off steam. He will go off to play pool, play poker or hike at the coast. He splurged on a fabulous dinner and wine pairing at Beaux Freres. I hope he doesn't feel guilty, but I know he does. It's a dance, for sure. His friends--our friends--have been so supportive. One even drove down from Seattle to be with Jason for the first pool night with the guys after Jason had a really bad week. Sometimes we don't feel we deserve all the kindness coming our way. Everyone has so much love to give.

My 8th infusion marked the end of my chemo vacation. I've started to call my treatments, Chemo Spa Days. I'm back in the chair. I'm back to pounding tall glasses of water, peeing four times during the night, changing and laundering the sheets everyday. I'm back to smelling like a stale tuna fish can.

I am so sick of this shit. Onward.

Rejected Again!

Last week I was tuned down again for treatment. My neutrophils are increasing but they weren't at baseline and my oncologist is following protocol. They were so close. Alas, there's nothing we can do but wait. So technically I have neutropenia, still.

Tomorrow, I am assuredly going to be infused and after three weeks of zero treatments, this makes me nervous. The internal vibrations that gave my body a turbulent, unsettled mood have vanished. My nails have stopped aching and I can finally use them to open box lids and peel oranges. When all I could tolerate was silence and books, I can now listen to podcasts and watch movies. A little taste of peace and normalcy has revisited my soul.

Many days ago, Jason and I were on our street close to home after returning from a walk on the trails, when a bat darted across nearly colliding into my chest. I wanted to yell, "Hey, watch where you're flying! Can't you see I'm neutropenic???!!" I'm not sure who was more shocked: Jason (he kept wondering about the threat of rabies and what would have happened had I been bitten), the bat (was it deaf? or was it having fun maneuvering over hills and valleys?) or me (I had never experienced a flying bat up-close before). The way it curved across my chest, only an inch--maybe two--away from my body and then swooped in between us as if toying with slow-moving humans before fluttering upwards in front of Jason's face. It was completely silent. And it's grace was spectacular. I felt that familiar surge of endorphins, and for a moment, I almost felt normal (the treatments keep trying to drain me of everything human).

So, yes, I definitely had a chemo vacation. And like Persephone, I'm not so sure I want to return to underworld. Tomorrow, it begins again. Only 63 more days.

Two weeks ago, I woke up

in the morning and winced while pulling out my earplugs. This is normal for me. My ears have been scabbed for a couple of months because of the pressure from the plugs. I took a sip of water and after the pain of swallowing, realized that my mouth sores had returned. Then I sauntered into the bathroom and looked in the mirror because something was bothering my eye. It was a stye. I decided to begin the laundry. While sorting clothes, my nose sputtered. Thinking it was the standard chemo runny nose, I sniffed and quickly swiped at it with the back of my hand, but my hand came away streaked in red. I returned to the bathroom for tissues. After tending to my nose, I pulled down my underwear and sat on the toilet. Even though my surgery with the robot was two and a half months ago, I'm still spotting (it takes longer to heal on chemo). I've been wearing pantyliners for three months. I then had to release some dogs from the doghouse in the backyard, so to speak. After I wiped and saw red on the toilet paper, I yelled a string of expletives. Third anal fissure.

While I feel better overall, my body is beginning to break down from the chemo wear and tear. I've woken up to blood on the sheets and blood on my pillowcase (it's not as bad as it sounds). If I begin bleeding out of my eyes, I might have all orifices covered. All six issues require regular maintenance, but the mouth sores are the most troublesome. One is on my tongue and the rest are down the left side of my throat. They won't go away, nor will they heal. It's difficult to eat, drink and talk. I've been prescribed "Magic Mouthwash" which acts like 10 minutes of novocaine, and I just received a FedEx delivery of GelClair which--fingers crossed--will speed the healing.

I was supposed to have my eighth infusion last Wednesday, but I've developed neutropenia (very low white blood cell count), so my chemotherapy has been postponed for one week. My bone marrow needs time to manufacture more fightin' cells (this is most likely the reason why I developed those little irksome side effects all at once). Doctor's orders: do NOT get another anal fissure. It concerns her most. My butthole must not become a revolving door to a bacteria disco party in my GI tract. 

And while we're on this subject... Some chemo patients suffer the indignity of constipation one week and then diarrhea the next. With one exception, the dogs in my doghouse have been a-okay. They are big and healthy and well-behaved. However, they need to go on a diet while my skin remains so tender. 

And so I chug the Miralax. And stay quarantined until my white blood cell count returns to baseline. And I count down the days until this is over. 

84 days under my belt. 63 more to go.