Infusion 2

Descending into the chemo tunnel is like walking into a concrete sewer line: the rotting muck, the stench, the dank air. It's dark inside and there's no way to find light. At some point, the tunnel slowly decreases in size until I'm on my hands and knees, my face inches away from the stagnant ammonia and shit, forced to crawl forward because there's nothing else to do.

Yesterday, I was on my hands and knees.

And yet, I can feel the tunnel give way. I know I'll emerge from it soon, allowing for some respite. I won't be entirely whole. I've been beaten. I'll be fatigued. But I'm hopeful that a bit of my personality will come up for air and I'll feel like me. Right now, I'm a shell.

I don't wish this on anyone.

And yet... it's working. When I first discovered my tumor, it was the size of a golfball. It felt like it had grown larger in the month that it took for the biopsy, scans, consults and surgery--perhaps to the size of a small apricot. After three weeks of chemotherapy, my tumor feels like a large marble.

After my first infusion, I laid in bed awake at night and felt the occasional sharp stab in my left breast. It was almost as fascinating as a first pregnancy, the imperceptible changes going on inside my body of which only I was keenly aware. The stabs were absent with this second infusion, replaced by tingles. It's working.

I share these images for you. I cannot look at them. They make me gag.

Treating cancer is a three-legged stool.

One leg is all the friends and family. They are the cheerleaders. They offer support and love, hold your hand, do dishes, make meals and happily scrub toilets. They pull beauty out of the ugly and know how to make you laugh. You my friends and family, have done this and so much more. Jase and I have been so touched by the bottomless well of your kindness and generosity.

The second leg is the medical team. They need to be trusted and respected. Period. Sure, it's great to have a breast surgeon who holds my hand and sings songs before I go under. That's a fun bonus. But I also have a deep trust of where she wants to lead me. And that goes for my oncologist and gyn onc, too--including that damn robot. In fact, the gyn onc and her PA bow down to the robot. The robot has made surgery down there a game-changer.

The third leg is the caregiver. This is a lonely job. While all the attention is on me, Jason works tirelessly behind the scenes--and tries to do so with a smile on his face. All three legs of the stool are invaluable, but the burden on the caregiver is most acute. It is entirely held up by one person: Jason. And things would get very interesting if we didn't like each other. He would fill me with his impatience and resentment, and I would heal awkwardly if at all. Thankfully, Jase and I do like each other very much, so he fills me with his love and irreverence. And I get the benefit of laughter and care. But caregiving is very, very exhausting, still.

No marriage escapes this. At some point, one will get sick and the other will become the caregiver. Perhaps each person will take on both roles during a marriage. Perhaps multiple times.

So to Jase, the John to my Abigail Adams, the Bert to my Ernie (remember, I'm a eunuch), the Piglet to my Pooh (or vice versa depending on the day): thank you. And I love you--in sickness and in health--very, very much. And happy Father's Day, too (because in our fucked-up universe, Father's Day will simply have to come next year).

We are still walking a tightrope.

Nigel's 103 degree fever continues, and he will still be contagious until he is fever-free for 24 hours.

One of the grandmas took Nigel to his pediatrician yesterday. He has a double ear infection and most likely some god-awful virus due to his aches and nausea. Might as well have thrown him into a den of daycare kids. In fact, the last time Nigel was this sick was when he was two and a half years old and our playgroup was at the Burger King playground. A van of daycare kids arrived and turned the place into Soddom and Gomorrah--which was fun for everyone. We all like a good party. And toddler nihilism is entertaining when they're not yours. But the next day was like a waking up to a bad hangover.

When you consider that on the day I was diagnosed with breast cancer, a driver--thinking she was on a two-way street--suddenly tried to make a left turn in front of me (I had to slam the brakes, lay on the horn and our cars did indeed kiss; both of us too shaken up to do anything but continue driving forward), and then the following day my car was actually totaled while I was in it (yes, yes I'll get to this story soon), I've come to one conclusion: somebody or something is trying to take me out.

But I feel great! I'm out of my chemo tunnel and have a surge of energy and euphoria. And perhaps testosterone. My face has completely broken out. I feel the need to do a pull-up. I'm playing rap music in my head (I blame that tech who played gansta rap during my bone scan because I've never been a rap kind of girl). I also know that once my pelvis gets the green light and after Jason has collapsed on our bed with a cold compress on his eyes, fatigued from a full day of nurturing and caregiving, I'm going to pounce and say, "YOU BROUGHT THIS ON YOURSELF!!!"

I don't know what's chemo and what's menopause. It will get sorted out eventually. But right now, it's a total rush.

I accidentally bit the side of my mouth

two days ago. One of those bad ones that ends with a crunch. I just hope things heal before my body is unable to fight it (oy, mouth sores, stay away!).

And to top it off, Nigel woke up really sick Tuesday morning. Fever, chills, congestion, earache (he has never had an ear infection before). The entire week's activities have been wiped clean. He's at home in bed, moaning and hobbling to use the downstairs bathroom because he cannot use mine. Meanwhile, my white blood cell count is tanking, so I yell from my room to his, "Drink your water!" He yells back when he needs something. And on very rare occasions, I enter his room to give him toast, ply him with more water, or help with his covers (and then immediately wash my hands).

Meanwhile Jason has a business to run and I urge him to leave. In the middle of the night, he gets up to tend to Nigel. This is epic. And so unnecessary. We're a sad, sorry crew.

And there's nothing anyone can do except feel helpless. Nigel needs to get better with quiet and rest. Period. And perhaps parents can be more socially responsible for their sick kids. That's all there is to do. 

But an ear infection? Really??? When does a nearly 12-year old get an ear infection for the first time in his life??? Nigel just recovered from the flu two and a half weeks ago.

Just keep your fingers crossed that I don't catch it. In the meantime, we feel your love and support. Now stay away!

Before I was diagnosed with cancer,

we had planned a trip. We were going to a wedding in Montana. Yellowstone! The Grand Tetons! Hiking and horseback riding!

More importantly, we were going to celebrate and support the same-sex wedding of two long-time friends.

We had to cancel that trip. And on Saturday night while the poisons worked through my body, I imagined the festivities, the laughter, the dancing. The next morning as I crawled into the kitchen feeling like my entire world was a never-ending hangover, Jase and I were horrified by the news.

Dearest sweet Brian and Wade, supportive friends, guncles to our children, beyoncees and now husbands: We're sorry there has been such deep, personal sorrow during your much-deserved, rightfully-earned celebration. Cancer comes in all flavors. We will beat this.

With much love and beauty,

Jason, Denise and Nigel

Edward Sotomayor Jr., 34 years old

Stanley Almodovar III, 23 years old

Luis Omar Ocasio-Capo, 20 years old

Juan Ramon Guerrero, 22 years old

Eric Ivan Ortiz-Rivera, 36 years old

Peter O. Gonzalez-Cruz, 22 years old

Luis S. Vielma, 22 years old

Kimberly Morris, 37 years old

Eddie Jamoldroy Justice, 30 years old

Darryl Roman Burt II, 29 years old

Deonka Deidra Drayton, 32 years old

Alejandro Barrios Martinez, 21 years old

Anthony Luis Laureanodisla, 25 years old

Jean Carlos Mendez Perez, 35 years old

Franky Jimmy Dejesus Velazquez, 50 years old

Amanda Alvear, 25 years old

Martin Benitez Torres, 33 years old

Luis Daniel Wilson-Leon, 37 years old

Mercedez Marisol Flores, 26 years old

Xavier Emmanuel Serrano Rosado, 35 years old

Gilberto Ramon Silva Menendez, 25 years old

Simon Adrian Carrillo Fernandez, 31 years old

Oscar A Aracena-Montero, 26 years old

Enrique L. Rios, Jr., 25 years old

Miguel Angel Honorato, 30 years old

Javier Jorge-Reyes, 40 years old

Joel Rayon Paniagua, 32 years old

Jason Benjamin Josaphat, 19 years old

Cory James Connell, 21 years old

Juan P. Rivera Velazquez, 37 years old

Luis Daniel Conde, 39 years old

Shane Evan Tomlinson, 33 years old

Juan Chevez-Martinez, 25 years old

Jerald Arthur Wright, 31 years old

Leroy Valentin Fernandez, 25 years old

Tevin Eugene Crosby, 25 years old

Jonathan Antonio Camuy Vega, 24 years old

Jean C. Nives Rodriguez, 27 years old

Rodolfo Ayala-Ayala, 33 years old

Brenda Lee Marquez McCool, 49 years old

Yilmary Rodriguez Solivan, 24 years old

Christopher Andrew Leinonen, 32 years old

Angel L. Candelario-Padro, 28 years old

Frank Hernandez, 27 years old

Paul Terrell Henry, 41 years old

Antonio Davon Brown, 29 years old

Christopher Joseph Sanfeliz, 24 years old

Akyra Monet Murray, 18 years old

Geraldo A. Ortiz-Jimenez, 25 years old

Infusion 1

I had my first chemo infusion three days ago. Three days down. 109 days to go. It feels like this will last forever.

The first infusion was uneventful. I had to take a bunch of meds: Emend, Deccadron and Zofran beforehand. They prevent nausea and vomiting. Also, since this was my very first time, they gave me an anti-anxiety med (bonus!). Perhaps it was the combination of all those drugs, but I felt buzzy and loopy and then passed out. I slept through the infusion of both my Adriamycin and Cytoxan. The nurse woke me up to say I tolerated them well and I looked over at Jason's smiling face in the chair across from me.

Adriamycin is known as the "Red Devil." The toilet bowl looked like a basin of tropical punch after my first pee post treatment. Both chemo drugs have a number of side effects that need constant monitoring.

I have to drink at least 10-12 glasses of water per day to get the poisons out of my system. And if I hold my pee for too long, they will burn my bladder and I will pee blood. It will look like coffee grounds on the bottom of the toilet. I have a one-liter Mason jar filled with water that I keep on the windowsill by my bed. Once I've drank its entire contents, I fill it up again. I know I've drank 12 glasses of water when I've dusted that jar three times.

I have to brush my teeth with a soft toothbrush and rinse and gargle with a homemade concoction of salt and baking soda--basically, runny snot--after every food I eat. My mouth needs to stay very clean or else I will get mouth sores. Ironically, flossing might cause gums to bleed and create sores. But since I'm an avid flosser (hey, gold star!), my gums are pretty tough. I will continue flossing until I have a reason to quit.

My white blood cells are going to plummet in a few days. To counteract this, I am given an injection to trigger white blood cell growth the following day after chemo. This production of white blood cells comes with it's own side effect--bone aches. For whatever reason, Claritin (yes, the allergy med) seems to alleviate this. Even though I took the Claritin, my hips and legs felt flu-ish for two days.

I have to take my temperature every day. If it gets above 100.5, I need to notify my doctor and go to the emergency room. Even if my temperature is normal but I suddenly feel unwell, I need to call my doctor. My risk of infection is high. Naturally, I have to wash my hands frequently and stop picking my skin. Any open wound risks infection in my body.

Currently, the chemo treatment feels like a really bad pregnancy--except I'm both mother and babe. I can't stand to be around cooking foods, I have cravings and I'm repulsed by things that I ate a few hours before. I need to lay down and rest, however, it's very important to stay active and move. I'm constantly monitoring my input and output: what I've consumed, what has come out, how much I weigh. After I've eaten something, I run upstairs to brush my teeth and rise with the snotty swill. Mouth sores! If I've forgotten to drink my water, I take giant swigs from the Mason jar. Coffee grounds! Do I have any nicks on my skin? Was I chewing the inside of my mouth? Am I holding my pee too long in the middle of the night?

I'm a fragile vessel. The countdown continues: 109 days to go.

I've cut Nigel's hair for years.

So for causing all those complaints, tears and bribes...

...this is total payback.

(Mehndi by Ahji--she does great work!)

Oxycodone is both a lifesaver

and a total fucker. Last night, I took my final pill. I certainly have more, but I won't use them. Yesterday I felt the withdrawal effects of my gradual weaning: sandbags in the arms and legs, irritability, lethargy, runny nose. It's the runny nose that gets me. How repugnant.

(RIP Prince, beautiful music genius trapped in an odious pit of hell; I'm really, truly sorry you weren't able to claw yourself out).

The cavern inside my body is slowly knitting itself together and that just grosses me out. I don't mind the robot holes much, but that cavern... Occasionally, I'll feel a sharp menstrual-like cramp which serves to remind me that my guts are readjusting. Eew.

When I travelled England 25 years ago, my friends and I pulled our car onto the side of the road just in time to see a cow give birth to her calf. The cow was laying on her side, and after the farmer assisted in yanking the calf from its mothers body, he gave the cow two hard swats on the rump and yelled, "Hee-yaw!" The cow stood up and trotted off, a trail of warm blood leaking from her back end. Concerned, we questioned the farmer. He said that cows heal faster when they move.

I feel like that cow. Doctor's orders are to move, twist and use my full range of motion. And if I'm unable to, oxycodone is there to help. It's been four and a half days since my surgery and I'm walking around house, doing laundry, and picking things up off the floor. And today, I'm oxycodone-free! Victory!

Now let's celebrate with some pot!

"Benign!"

That was the first word I heard from Jason when I woke up.

This is what happens when robots attack (48 hours post surgery):

My abdomen is still swollen, but there's hardly any blood down there. Minor spotting yesterday, nothing today. I have to inject a blood thinner into my belly for seven days. Apparently, I'm more prone to blood clots because of the cancer in my body. 

My abdomen is far more sore than anything in my lower region. It almost feels like aliens came down and swiped my precious organ while I was asleep in bed. Although those first few hours post-surgery were significant. My entire body shook and my teeth chattered violently, just like when I had given birth to Nigel.

One person told me that during my surgery, I would be hanged upside-down. She had had a face-lift down there (not elective; it had caved-in) and that's what they had done to her. And it's true! I asked my medical team and they giggled and said, yes, I would be slanted downward at a very steep angle. Lord knows what they did with my legs. And just before I went under but right after they gave me the Versed (the Alice in Wonderland drug), my breast surgeon suddenly appeared through an invisible curtain, grabbed my hand and belted out, Somewhere Over the Rainbow. The gyn onc seemed a bit peturbed and reached for my hand, too. I heard apologies whispered from my breast surgeon to my gyn onc, and then I went to sleep. 

When I woke up and told Jason the story he said, "Are you sure it wasn't the drugs?" I have to wonder. 

The surgery only lasted one hour. I guess my uterus was well behaved which would be the only time it ever has been. Personally, I could grind it into the ground and kick it in gutter. It never did me any favors: painful cramps that kept me crying in bed away from school, ejecting Nigel at 29 weeks. It was considered "irritable."

But my ovaries... I had a hard time accepting that I was going to lose my ovaries and fallopian tubes. They were my friends, a woman's Tree of Life. But now I'm being slammed into menopause. I always imagined my ovaries and fallopian tubes quietly undulating like seaweed attached to the ocean floor, reaching up toward the sunlight, but I know the reality is that they are more like the arms of an air traffic controller. My left ovary happened to be hiding behind my uterus, weighted down by the questionable mass. And who knows where my right one was. Now they are both gone.

But it's time to pull myself up by my bootstraps and move forward. I've got some cancer ass-kicking to do!

Today has been a total whirlwind.

I received a call this morning. My surgery is happening tomorrow.

I didn't even know where to begin with the list of tasks I had planned on doing before I would get sick. I ran around buying snacks for Nigel, cereal for his breakfasts (Cereal! We don't do cereal.), shinguards, kneepads, birthday gifts and a book. I also had to buy clear liquids for myself. 

Yes, I've been powered by clear liquids all day. And MiraLAX. 

I drank two doses of MiraLAX, once at noon and once at 3:00pm. Considering all this input, there has hardly been any output. I'm thinking about drinking a third dose of that swill.

Originally, I had wanted to do a colonic and it was approved by my doctor. But the next opening turned out to be nearly two weeks away--apparently Portland likes its colonics--so now I'm stuck with the MiraLAX (I can write about this; after all, I'm having surgery through my vagina).

Around noon, I ran into one of my neighbors while carting bags into the house. And before I knew it, three of my dear, sweet neighbors were vacuuming, sweeping, mopping, wiping and scrubbing our upstairs, downstairs and basement. One even cleaned our bathrooms--bathrooms that are constantly violated by the unruly urine of a boy (Thank you so, so much Ashley, Marisa and Summer!!!).

And then everything came screeching to a halt. 

I received a phone call from Good Sam, the hospital of my scheduled surgery. An out-of-network hospital. The employee read a disclaimer that the surgery would cost $31,000 and there was no guarantee that Providence, our insurance, would cover the cost. Whoa!

I immediately called our insurance broker. She went to work sorting through the paperwork labyrinth and made several phone calls on my behalf. Providence will cover $18,000 of the out-of-network costs, but there's a specific form that needs to be approved, allowing out-of-network doctors to have part of their services covered by an out-of-network provider. There is no guarantee that this will happen. We might get stuck paying $13,000. And the soonest available surgery date for our in-network hospital is one week away. When post-surgery recovery is factored in, I wouldn't receive my first chemo infusion until mid-June. I need it now. 

But then our insurance broker said some truths that made all the stress and anxiety melt away. I need this surgery now. The cost doesn't matter. I would pay that much for Jason. He will pay that much for me. I need to focus on myself, meditate, sleep well. She will work to reduce the costs--like a motherfucking pit bull. 

All these amazing people who are poised and ready to support me and Jase has been so overwhelmingly beautiful.

And all the Dudette ever wanted was to have her chemo...