The Chair Next to Me

Most women are blessed, at least once in their life, with a girlfriend who is nothing short of a gift from God. Among the small handful of such girlfriends in my life is Nickole, who I have known since the 6th grade. At the time of my diagnosis, Nickole had a 2 year old, a 1 year old, and was pregnant. And she’s also the person who was sitting at my side for my 1st chemotherapy infusion.

My mother would have been there in a moment, had I let her, and there is host of other people I could have asked to come, but Nickole was the first person who simply said she would be there, and then was. For all 5 hours.

My dad stepped in and took the burden from Nickole, showing up the night before each consecutive infusion day and rising first thing with me to get me to those unpleasant appointments. He always paid the exorbitant parking fee we were soon to get used to, always brought me a muffin or a sandwich, and always stayed close, whether pacing the hallways or settling into a folding chair at my side.

 

At first I would try to discourage him from coming, assuring him he didn’t need to make the two hour drive to accompany me. The memory of this will astonish me over the remainder of my life: I received 6 terrible rounds of chemotherapy; I was prepared to do it alone.
 

In the moment, it’s about practicality. Life morphs into appointment after appointment and I simply coped with a head-down, get through each one, kind of mentality. In retrospect, even more so than at the time, I am so glad my dad was there to sit next to me, to drive me, to be there. I also understand that, for himself, he had to do his part to try to take care of me.

So many loved ones will help me get to, and through, medical procedures, will help me look after Little H, help me keep my household running and put dinner on the table, help me feel loved in a time of brokenness.

But today I thank Nickole and my father, for sitting next to me.
 

Bone Scan Birthday

It's my birthday, my 29th.

I can imagine a lot of lovely ways I might like to spend this day, none of which involve getting a bone scan. But imagine and reality exist with an ever-widening chasm between them these days; the day is spent undergoing the procedure.

After a cancer diagnosis, a bone scan is often ordered to determine if the cancer has metastasized (spread) to the bones. The test is a two-step process. It takes place in a Nuclear Medicine center where a radioactive substance is injected into a vein and then, after three hours, a machine that screams “this test is going to be expensive” scans your body and creates a digital image for the experts to analyze. 

I awake on this Monday morning optimistic that I can still have a pleasant day, in spite of the circumstances. The test shouldn’t be too strenuous or uncomfortable, and my husband and son, Bobby and Little H, are coming with me. (I’m in a take-what-you-can-get kind of mentality these days.)

The 17 mile drive to get to the medical center, that has readily become my second home, takes us a full hour on the Los Angeles freeways and is seriously unpleasant. My optimism for the day is quickly curtailed. Bobby is unusually chatty, discussing whatever topic enters his mind, but I’m too focused on the ticking clock to concentrate. There’s too much traffic for the middle of the day; we’re cutting it really close. Why is he always in the wrong lane? Am I going to make it on time or have to repeat this trek? I can’t even bring myself to partake in the usually exciting business of spotting trucks for Little H in the backseat. 

Just in time, Bobby finally pulls in front of the medical plaza and I hop out. After a quick trip down the wrong set of elevators and back up, then down the correct set, I enter the waiting room at exactly my appointment time. “Just one paper for you to fill out and I’ll let them know you’re here.” That sounds promising; except the waiting room is so packed that it belies any succinctness. 

I fill out the paper rapidly, as though that will help me get in faster, and then take the sole remaining chair. There are a lot of old, sick-looking people waiting. 

I stare at the edge of the coffee table. I stare at the clock. I realize I’m sitting on the edge of my seat and try to relax into the chair. It’s fairly obvious they won’t be calling me anytime soon. That lovely plan I concocted of Bobby and Little H picking up our picnic lunch and then coming back for me is starting to look bad. Maybe I should have come by myself.

After 30 minutes I ask the receptionist, as politely as I can, how the wait is looking. She makes a phone call and then cheerily tells me “5 more minutes.” That makes me cheery too. 

15 minutes later I’m called to the back. The tech prods around in that sensitive part in the fold of your arm - preciously where I’ve already had blood drawn twice in the last couple of days. Ominous looking metal box and needle kit appear; injection into bruised, sore skin; done. And I’m literally running out the door.

The next two and half hours of waiting time before I have to be back for the actual scan are spent at the only feasible option within a 20 minute driving radius, the local park.

The three of us eat the sandwiches the boys picked up and then Bobby pulls out a Birthday treat for me, a brick of pecan-bar pastry that he’s sure is “just my style” of sweet. It makes my stomach churn. (We’ve been together 11 years but the dear man still hasn’t mastered my tastes.) The dessert is like the birthday itself… just so far off from good. 

While Bobby runs around on the play structures with Little H, I camp out in the sunshine, amidst the nannies talking in Spanish into their cell phones. I’m too tired to join my family.

Watching them and not being able to participate is a severely unpleasant activity that I have become familiar with over the past months. When my inflammation problems were at their worst, I was forced to become an onlooker, watching with a deep longing to participate in my unfolding life. On this day, I blessedly have the ability to move, but instead am weighed down with the heaviness of fatigue. I’ll witness their energy and save mine.

I’m jealously peering at the homeless man dozing a few trees over with a blanket under him and a backpack-pillow. Dang he looks comfy. 

It may be my imagination but I’m pretty sure the alert nannies in the bunch are starting to give me suspicious glances. My child is now nowhere near; I’m just the really-short-haired weirdo sitting alone and unmoving in the kid area. 

Finally, with our limp attempt to have a pleasant afternoon picnic behind us, it’s back to Nuclear Medicine for me. A quick 10 minute sojourn in my favorite waiting room and I’m led back to the machine room. I change into a robe and I’m up on the table. The scan is only mildly uncomfortable. I’m wrapped up in a cocoon of sheets so I can’t move, the table under me gets a little shaky and warm, and a large, square slab is lowered just above my face. Over the course of the next 45 minutes, the slab moves very slowly down my body. Then it’s over.

And there it is – traffic on the way home, a bowl of cereal for dinner, an unpleasant medical bill in the mailbox – and my 29th birthday is over. 

Sick Tinkerbell

I'm about to cut my hair off.

Apparently there’s a prescribed protocol for the psychological preparation of losing one’s hair during a chemotherapy regimen. First, you crop it into a very short cut to prepare yourself for the loss. Once it does actually begin to fall out, you shave it off to circumvent the uncomfortable, unsanitary process of shedding.

Conveniently, my mother-in-law is a cosmetologist and has come to perform the grim task of Step One for me. I give her free reign to chop it off in whatever style she sees fit. After all, whatever the outcome, it will only be there a couple of weeks. 

 

Trying to festive-up the mood, she also brings along some hair dye to change up my light brown color, that I always leave as-is. I don’t really see the point in investing the product or the time to color hair that will be falling down the drain in a fortnight, but I don’t bother to refuse.

So the lovely, dark cinnamon color gets put on, and then we head to the garage where the real fun will take place. As opposed to watching the progress in a mirror, I’m pleased to be staring absently at the moving boxes piled in the corners of our small garage. 

The chopping starts. 

 

My husband, my father in law, and my son are sitting on the bumper of our car and watching the show. At some point, my son, Little H, climbs down and starts sweeping the piles of hair around the driveway. He’s forming a long pathway out of the clumps of long, wet strands. The genius child is creating a metaphorical pathway to ease me away from the locks. Yes, that, or he's randomly playing in the mess. 

Meanwhile, my husband Bobby is smiling and nodding encouragingly. He looks excited; I can tell he likes the do and thinks I will too. A little variety now and then is good for a gal. This could be fun. 

Then Bobby stops smiling. The hair is getting cropped closer to my scalp and the energy in the garage dies into a quiet. Clearly, it’s crossed the line from cute. I wonder if I’m going to cry when I see it.

We finish and I head inside to take my first look. No, I don’t cry. I just stare sadly at myself, alone in the bathroom mirror. There are dark bags under my tired eyes and the new dark color of my hair makes me look even more pale than I currently am. I look sick.

 

And then of course, there’s my hair itself, or lack thereof. It’s wispy and curls up around my ears and down my neck. It’s a little longer in the front, but very short down the back. I look a little something like Julia Roberts as Tinkerbell in Hook, except without the lovely face and glittery wings. 

I turn from side to side in front of the mirror and run my fingers through it. Who cuts their hair this short, really? I mean, if they’re not portraying a mini whimsical character, not an eighty-year old with a perm, or perhaps looking to attract another woman, who desires this look?  Weird people, that’s who, I irrationally conclude. 

 

With a glance, I will get pegged as a weirdo. Accurate or inaccurate, the summation has the same effect on my self-esteem. 

When my hair begins to grow back at the end of the chemo regime, in the agonizingly slow process, I will actually be thrilled when it reaches this length, which I currently detest. But I have nearly a year of gaining perspective ahead. If ever you are unhappy with what you have, take more away and you’ll quickly realize you should have been happy before.

For now, I have a couple weeks of “Weirdo-Tinkerbell” until I become “Alien/Sickie.”

The Golden Girls Wig Shop

Wig shopping was easily my favorite activity in the two week whirlwind of appointments and tests immediately following my diagnosis. 

At my initial meeting with my Oncologist, we decided to do chemotherapy neoadjuvantly, (before surgery). So, chemo was to be my first hurdle.

I was informed that hair loss was a definite, to be expected. The breadth of that forecast was something that would take months of baldness to fully understand. On this day, I simply am going shopping.

While waiting for an astonishing slew of prescriptions to be filled, I wander into the medical lobby “boutique” and start perusing the array of synthetic wigs adorning the shelves. A sweet and helpful sales associate, Betty White-incarnate, steps forward and asks if she can help me.

Yes you can! Show me this array of new-hairstyles-in-an-instant.

Shopping always has the potential to be fun; I find it to be especially so when seeking something I actually need. (Sans the guilt over excess, the acquisition process is much more enjoyable.) I definitely don’t own a wig and am about to really need one, so bring it on Betty White. 

My enthusiasm for this endeavor is profoundly naive. While I am choosing to focus on the positive of having new "hair," I am, of course, oblivious to what a year and a half without my own hair will be like.

I try on ultra-short styles to medium-long. I see myself in an instant variety of colors from strawberry blond to raven brown. 

My girl Betty looks to be enjoying dressing me up, but I’m also detecting a projection of empathy. She looks at me just a little too long each time we make eye contact. She touches my shoulder and tilts her head when we talk.

Yes Betty, I’m rather young, very sick and about to lose my lovely long hair, (which suddenly seems lovelier since knowing of its impending absence.)  However, this highlighted looking get-up is quite nice. 

My husband is confused as to why I am not considering anything that actually looks like my hair. In the absence of the need to camouflage my condition, I feel a freedom to try any wild, un-me style that I desire.

I decide to go with the highlighted, primped-looking one in a medium length. Just plop it on and instant pizazz - that sounds like what I need.

Inching Foward

Day after day is spent driving to medical appointments. I meet my surgeon and her staff, my oncologist and his staff, am referred to a plastic surgeon for reconstruction, and a psychologist, to make sure I’m holding it together. I have a chest MRI and a mammogram on a breast still very sore from being cored like an apple. I have x-rays and blood panels drawn. I have genetic testing performed.

The early weeks amount to putting one foot in front of the other and showing up at appointment after appointment.

I am not coping or processing. I am simply inching forward into the battle.

Die-agnosis

We’re sitting in a waiting room of adorable, expectant couples, waiting to be called back and told I have breast cancer.

Time is suspended, as though I just moved out of my body into an ethereal aura of the surreal. My hands are shaking and I’m alternating between bouncing one knee and then the other. But my mind is still. I feel as though I’m watching myself sit there, watching my husband fidget anxiously in the chair next to me. I’m actually one of the pregnant women across the room.

There’s a tissue box on top of an ugly table in the corner. The tissue looks like an emerging white whale tail. I stare at it, letting my eyes get dry from not blinking. What’s happening to my life? Where can I possibly go from here?

When we’re finally called back, we sit across from the doctor in her office. I didn’t know she had an office. She shares all the information she has with us, in a soft, almost tentative manner. She looks like she’s expecting me to erupt into sobs at any moment. I do not. I stare back at her. Ask as many questions as I can think of. Nod my head. Glance at my husband. What is he thinking?

Inside, I’m floating away. There is a flutter of activity below me, but I am still – still in a vibrating darkness. There is the white whale tail. I see my 2-year-old’s face. I see my hazy perception of God’s likeness. Hope touches down in the darkness, ever so lightly.

 

We leave, to go home and try to tell my mother I have cancer.