Dying on the Floor In Diapers

Before I can tell the stories of beauty, the stories that are so easy to read and that uplift, I must first continue to trudge through the muck of my tales of descent.
 

Round two of chemo brought on not the cramps of my previous labor-in-the-bank-lobby but torrential menstrual bleeding, and most definitely is a tale in my book of woe.

It starting on a Friday afternoon, like so many health problems do, and lasted until I could get help on Monday. Seventy-two hours of aberrant, disconcerting bleeding plagued the weekend.

The hemorrhaging came so quickly and so profusely, just leaving the bathroom was a challenge. Towels, rags, extra thick pads, my son’s polka-dot diapers, nothing could hold the blood flow for any significant amount of time.

An immediate call on Friday to the oncology nurse (“heavy menstrual bleeding is common with chemo”), an emergency page to my oncologist on Sunday morning (“you can go into the ER today or you can just come into the office tomorrow morning”) and a Sunday afternoon visit to the urgent care (“your hemoglobin results wouldn’t come back for 24 hours, so we can’t do anything today”) were all wholly unhelpful.

I was left to eek through the weekend hours, laying in the empty bathtub and bleeding. Our bathroom was a like a butcher shop, red and stinking of warm metal, as I essentially laid dying on the floor.

By Sunday I was weak and light-headed. I couldn’t make it up our staircase without stopping to rest after every couple of steps. I breathed heavily and moved slowly. I was sheet-white.

But the blood just kept coming.

While it was frightening and utterly strange and miserable, it was also kind of... ordinary. If a normal/rational/healthy person was bleeding out in their bathtub through the weekend, that person would likely get themselves to an Emergency Room with an expectation of at least some degree of help or healing. But that's the thing about being miserable; the miserable snakes in and pushes the normal out, little-by-little, changing how you interpret and understand your world. Neither expectations nor healing felt realistic. 

So I just waited.

Try Thankfulness

It seems cancer has ruined Facebook for Bobby and I.

The status-update complaints about colds, headaches, bad weather, or offspring’s skipped naps are suddenly framed as so ridiculous. We sometimes joke about the type of responses I could post, pairing these relatively insignificant adversities against the extreme brutalities of cancer. Wouldn’t that be gracious of me?

At the same time, the reminders that other people’s lives are continuing on as normal can be painful. Wouldn’t we love that the most noteworthy part of our day was the onset of a cold, trying a new restaurant, getting a new washing machine, heading out on a vacation, painting a nursery... 

Of course I wish that I were healthy and our lives were progressing as normally as we had planned for them too – like everyone else’s around us. This is a near-constant source of pain for us, as we struggle to maintain our footing in a mountain of upheaval.

But really, whose life ever does progress according to their own plan? Aren’t we all derailed by unmet expectations, disappointments and difficulties?

Some of us are restored by a belief in a God with a master plan for each of our lives. A sense of providence to hold onto within the chaos of reality can be deeply comforting. I wish that peace upon everyone. (Sometimes I’m re-wishing it upon myself.) 

 

Most of us would acknowledge that the brightest (or darkest) qualities of a person often come out under suffering and adversity. Within the burdens, labors, and afflictions are where we learn patience, faith and wisdom. Because who has patience with nothing to bear on it; faith without trial to test it; knowledge, without all manner of experience to develop it?

Now, I would personally like to think I had reasonably developed attributes without having to get cancer and Spondylitis; couldn’t I instead have been given some smaller challenges… maybe a couple of repeat sinus infections, a challenging boss, a poor investment… more run-of-the-mill stuff to build my character? But then, my entire life course would be different; the person I am to become not achieved… and perhaps, entirely run-of-the-mill.

I am not advocating suffering. I’m only holding out my tweezers in an attempt to pluck some shreds of benefit from what otherwise could be seen as wholly and completely negative.

Happiness demands a good attitude. Some of us, however unintentionally, seek out worry regardless of how much joy and peace could be settling upon our lives. Healthy or unhealthy, I am guilty of getting caught up in my own pain and suffering with a frequency I am ashamed of, but I often need only to remind myself to adjust my attitude in order to calm down - and feel remarkably happier.

Regardless of the size of the adversity - be it a cold, a headache, uncooperating weather, a child not napping, or be it cancer - a grateful heart is an incredible cure for despair.        

So, while adversity, sadness and fear have begun to plague me with regularity, I can only respond with focus on my attitude and let happiness follow, when it will.

 

Give thanks in all circumstances; for this is the will of God in Christ Jesus for you.
1 Thes 5:18 

The Night I Almost Melted My "Hair"

Sometimes it's good to get out. 

My husband was just hired as a visiting professor; day 3 of my 2nd chemo cycle was the welcome dinner for new faculty and their spouses. I was determined to make this occasion, to enjoy the red snapper and to participate in our lives as normally as possible. 

Plus, this afforded an excellent first opportunity to don my new wig, “bangs” bobby-pinned neatly to the side and all.

You know the outfit you conjure in your head when you’re trying to decide what to wear to a special function?  I was so out of energy when it came time to get ready for the dinner that I dressed in what I had envisioned, (of course) didn’t like it once it was actually on, but proceeded to wear it out the door anyway. Completing my look, I also didn’t wear any makeup, which was due to two simple facts: (1) my wig is so over-the-top styled, primped and highlighted (my girlfriend calls it “High Maintenance Jen”) that I feel the need to tone it down with a plain face and (2) I’m afraid to touch my eyes because I’m holding fast to the delusion that my eyelashes will remain firmly implanted through the balding process if I simply don’t touch them. 

So, it seems, all you need to get yourself ready and out the door promptly and without fuss is cancer. A little nausea, a little hair loss, you’re ready to go in no time flat.

I arrived at campus on time, even a little early, and met my husband, who was just finishing up a long first day of orientation. We meandered together over to the reception location, taking our time and enjoying the very well-manicured landscapes of the campus. I was trying to appreciate the two of us being out together without our son, a rare occasion to be sure. I want to hold his hand and relish the togetherness but felt a bit like I am about to vomit in those lovely bushes and my head is throbbing. Dang this wig is tight. I’d only had it on for the half hour drive there and was already contemplating ripping my head off my shoulders. Well, that or sporting a bald head, which seemed like equally appealing options. How in the world do people wear these things all day?

As I’m increasingly losing focus on what my husband is talking about, it occurs to me that the head cap, underneath the wig, may be what is causing the crushing tightness. We duck into an open building so I can pull my hair off in privacy. There, that’s better. The wig alone is a much more manageable discomfort.

Even feeling ill and shabby, the lovely garden setting of our campus soiree was not lost on me. I love special occasions and events; noticing details and appreciating nuances is part of who I am. The well-shaped floral centerpieces, the bright table linens and readily available waiters, it is all simply lovely.  

Shortly after I was cutting myself off from finishing my entrée, recalling a punishing chemo-heartburn from an evening prior, a waiter came by and lit the outdoor heat lamps. I lean back, only slightly bored by my husband telling stores I’ve heard many times before, and enjoy the warmth emanating down on me as the evening chill sets in. How convenient that I’m seated just below this heater of the out-of-doors.  

Then it hits me. My peaceful moment is ruptured with the frightening realization that I’m like a marshmallow under a flame. I’m wearing a synthetic wig that is so intolerant of heat that I’m not even supposed to eat soup while wearing it!

Dear Lord, I’m about to melt in front of 65 strangers that just became my husband’s colleagues.

There are no empty seats on the other side of the table, so I’m wedging my chair away from the heat with as much discretion as possible. I’m leaning my upper torso and neck to the opposite side, trying to make the strained position look natural and subtle. Yes, I’m just swan-like; craning my neck like this is perfectly normal and ordinary. I’m stroking the top of my head and running my fingers through the “hair” repeatedly, which I’m sure is doing wonders for the high-maintenance aura the wig itself provides me. But I can’t stop touching it.  If it’s starting to sear, I would like to be the first to know.

My husband is completely oblivious. He’s droning on about some way academia can relate to the outer world as I’m trying to make a snap, but very important decision as to whether I’ll be using the soiled napkin in my lap or the one in the breadbasket to hastily create a headscarf over my singed scalp before I make a mad dash to the car. The one in my lap, definitely. The breadbasket is two people over; I might have to say, “Pardon me, would you please pass the bread” while smoke is encircling my scalp. 

Apparently, a scarf is to a cancer patient what a diaper is to a new mom – leaving home without a spare could be disastrous.

Another couple minutes and a few dozen more attemptedly-discrete strokes across the sandy-blonde strands and I started to calm down. It's only mildly warm to the touch. I realize my do will hold-up and I am gradually able to stop eyeing the lovely silk napkins with plans of making a master escape. 

My bizarre inner monologue concludes as I digest that the situation is controlled; my facade of normalcy will hold for the evening. I’m out; I’m here; I’m not on fire. 

It's a good night.

Call Me a Wig Amateur

That wig I ordered a couple of weeks ago from The Golden Girls Wig Shop just came in, in a timely and apropos arrival. I cheerily picked it up, brought it home, tried it on, and... realized I should have spent longer wig shopping. 

Going with my husband, Mr. Patient, at the tail-end of a long afternoon of appointments at the medical center was a mistake. He was simply ready to get the h-e-double-hockey-sticks out of there, as his body language so easily told me while he paced around the tiny shop next to the pharmacy. In response, I’m afraid I made my selection a little hastily. 

Upon giving it a good look, with it now under my ownership, I became keenly aware of one rather glaring flaw: the front hung over my eyes. It's a take a on the sideswept-bang look, but I would call it more of a vision-impairing sweep.

Unlike natural hair, there is no pushing synthetic stuff to the side; no sweeping it off your forehead or tucking it behind an ear. Every strand is made to stay in exactly the original position and style. 

I'm afraid I can also tell you there is no trimming synthetic hair. Well, no trimming it by an amateur anyway - which is precisely what I am, a wig amateur. I mistakenly thought I could turn those pesky strands into shorter bangs with a few snips.

I suppose you could call what is now the visor of sticking-straight-out hair at the top of my wigged forehead “bangs” but that would be awfully generous.  

Well, Bangs-Visor, meet Bobby-Pins.

Mommy Don't Like That

 

The metamorphosis into bald is an intense push into the depths of the emotional fight of a cancer diagnosis. Overnight, you become a person who looks so ill that people actually perceive you, with one glance, as someone who is dying.

Bald telecasts cancer to the world and it is a perpetual reminder of it to oneself.

The beginning stages, after just having lost your hair, is an especially sensitive time in which it’s difficult to not feel shocked at every reflection of your image.

The first person I let look at my bare, bald head was my son, Little H. He and I took a bath together the evening following the shaving. He seemed surprised to see my naked, hairless head joining us in the tub. I tried to explain to my happily-oblivious toddler that my hair is gone now, which I don’t really like, so I’ll be wearing a lot of hats. 

 

He nodded casually and then concluded our heart-to-heart by pointing at my head and saying, “Mommy don’t like that.” 

 

Keeping the conversation simple and light, I replied, “That’s right son, I don’t really like it like this." 

And so went the next 5 minutes with him repeating “Mommy don’t like that” as he pointed at my head and tried to process what I had told him.

 
Over the next week, he would occasionally recall this conversation and repeat the mantra as he focused on the scarf or hat atop my head. With beautiful succinctness and accuracy, my 2 ½ year old son walked around proclaiming, “Mommy don’t like that.”

**A longer version of this tale was shared in the Easy Reader News and can be found here.**

I'm Losing It, My Hair That Is.

On an ominous night, 2 weeks after round one, my scalp started to feel strange, heavy and tingly. I awoke with dread. By the time I got into the shower and ran my hands through my short-do, the light friction of my fingers pulled the strands out in disheartening quantities. 

It was happening. I was starting to lose my hair. 

Immediately, I want it shaved off. I don’t need to lose it in clumpy stages or to hang on to scarce strands among a desert of baldness. (Gross.)

What is like for a man to shave the head of his high-school sweetheart, his prom queen, his bride? Well, I don’t know, but you could ask my husband.         

Bobby is a very stoic soul. It didn’t occur to me that shaving my head might be not only a traumatic experience for me but also for him. I imagine I know him well enough to accurately conjecture that he was thinking about how I was handling the situation as he passed the buzzer across my scalp, but a girlfriend implanted in my mind that shaving his wife’s head might be a little hard on him too. Fair enough. 

So on this night, as we were (quite literally) facing tribulation head-on, I attempted to lighten the mood. That is, after I stood at the bathroom mirror with a pair of scissors in my hand for 5 minutes, paralyzed from making the first chop of those few inches I had been maintaining for the last couple of weeks. After a big hug from Bobby and a frantic little yelp, I did make the first cut and just kept going until it was a very unevenly cropped mass, which surprisingly, didn’t look that frightening. 

Okay, cue lame attempt to be light-hearted: “Well Bobby,” I say, “I guess I don’t need my keys anymore…" (too long of silence while I try to build up the punch line suspense and he stares at me blankly)… "I’ve lost my locks.”
 

Out to the driveway we head (for ease of clean-up) with a chair and the clippers. A PJ-clad Little H followed behind, pulling on his rain boots by the door and trotting out into the action, as though this were a normal family activity. 

As Bobby passed the noisy buzzer across my scalp, which hadn’t been exposed since I was an infant, I had planned to look up at him and say, “I better not wear a turtleneck, I’ll look like a roll-on deodorant,” my second prepared bald joke that I had looked up online moments before we began. But I ended up not having the heart. 

The clippers were really loud and uncomfortable and I just wanted to get it over with as quickly as possible. (Bobby was keen on starting with shaving a mohawk and taking a picture, so I guess he was handling the situation just fine after all.)

Adding to the thrill of this enlivening experience, I live on the west coast of Los Angeles: our neighbors are close and plentiful. The loud buzz of the shaver drew them to their windows like rubberneckers to a freeway accident and a small audience gathered to mortify me with their interest. Fabulous, now I get to be “the really weird butch chick” who just moved in across the street.

So yes, in summary, my husband shaved my head in the driveway while my son stomped around in the hair in his rain boots. Just another normal evening…

 

Labor, Without the Birth

Today I went into labor. Except, of course, I’m not pregnant. 

As I'm exiting the delirious 5 day haze of my first chemo round, I am eager to be feeling better. The moment I begin to have some equilibrium, I'm out of bed and picking up the house. I determine that a morning errand would be feasible, so the three of us head out to a local bank, where we need to open an account.

Halfway through the opening process, while I’m seated at the desk of the bank employee, a wave of pain descends over my lower body. In the quasi-comfortable chair, in the center of a large bank lobby, I start into what was essentially back labor.

Coming in couple minute waves at first, a strong, clenching pain is gripping my lower back. I don’t understand what I’m feeling but am trying to rush the banking process as much as possible in order to get out of there before I faint, throw-up, or start bleeding - not really sure which is more probable. 

A rational person would have turned on her heels and left right then. But I am not rational today; I’ve been inside the four walls of my bedroom, deliriously ill all week. I am determined to accomplish something productive today, and moreover, to prove to myself that I will come out of each round of chemo quickly and return to normal. (Determination will be one of my more significant coping tools.)

Yes, our information is correct. No, I don’t want to upgrade. I’m mouth-breathing, trying to do so quietly.

Yes, I’ll take checks. No, I don’t need a credit card. Blotchy spots are appearing in my vision.   

Meanwhile, Bobby is growing impatient because the account-opening process is taking longer than he anticipated. He’s tired of trying to entertain Little H in the midst of the bank and is shooting me annoyed glares over the cubicle walls anytime I’ll look up, as though I’m delaying this process out of enjoyment. In spite of the silent battle I’m waging with my insides, he’s still managing to stress me out.         

My chatty teller eventually wraps up the thorough process, but not before the manager is brought out to meet us and thank us for our business. I can barely muster a smile to greet his enthusiasm. I notice my ultra-tactful husband pacing the lobby doesn’t bother to offer much of a smile either. 

Finally, we’re heading out. Bobby sulks to the exit, Little H bursts through the doors like a caged animal set free, and I shuffle behind them, focused on getting inside the car before I lose consciousness or any kind of body fluid.

Before Bobby can get the first complaint out, I’m in Lamaze-breathing mode to bear the sharp cramps that are coming faster and have spread around to grip my front. “Hurts. Here.” I gasp, clutching my lower torso. Before we’re through the first stoplight, I’m sobbing. 

There is a level of pain, for those of us who are weak enough, that is so intense, you wonder if there is a God. Wrenching pain you can’t see through. Nothing else exists during that pain; just white and pain. Even for weeks after it's subsided, the mere memory of it will bring you to tears.

Today was that kind of pain.

After talking a frenzied Bobby out of driving to the Emergency Room, we made it home and got a quick call in to my Oncologist’s office. The nurse advised Bobby that I was having side effects from the shot I received a few days prior, a drug called Neulasta, which is used to help restore white blood count, post chemo. It’s standard protocol; most chemo patients receive this sort of injection after each round to help avoid infection whilst depleted of white blood cells. 

Only, the nurse was wrong. I was not having a reaction to the Neulasta, but to the chemo itself. My hormones were scrambled and were actually putting me through an odd simulation of labor. But it will take us until this time next round, when things get even worse, until we realize what’s happening.

For now, the nurse has called in a prescription for Vicodin and I spend the next three days taking it around the clock, until I can feel the pain subsiding. 

A year ago I had a virtually empty medicine cabinet… a few vitamin bottles, a couple old, expired prescriptions. I usually let a cold or a headache run its course and avoid medication, however stubborn or irrational my husband finds this. Suddenly, my medicine cabinet has become a small pharmacy of strange prescriptions I can barely keep track of. And I did not hesitate one bit to take those pain-inhibiting Vicodin.

That night, I was so exhausted I actually told Bobby I couldn’t talk; we went to bed in silence. It was definitely a rough day. I went to sleep wondering when things would stop getting worse. 

Yoga Retreat, Guest Blog

This week, I had the privilege of guest-blogging about my participation in a Foundation for Living Beauty retreat at the Y4C (Yoga for Cancer) site. Check it out at:

Sisterhood of Support

6 Rounds, Brutal and Ineffective

Cancer is defined by abnormal cells that divide and multiply without control. Chemotherapy drugs work by targeting rapidly dividing cells within the body and killing them off.  But they target ALL rapidly dividing cells, cancerous and non cancerous, causing many and often severe side effects. Hair follicles, blood cells, bone marrow, cells in the mouth and intestines, and even healthy brain cells are commonly affected. 

The nurse went over all the possible side-effects of chemotherapy with me before I started. And I read the handouts diligently.

But everyone’s body handles the drugs differently, (and there are a host of different chemo cocktails used for different types of cancer) so, as attentive as I was to the possibilities, I couldn't know what was in store for me over the coming 5 months.  

I certainly didn't realize at the time that my handout of possible side-effects would become a virtual check-list of what I was to undergo - those, and then some. Each “or” was to be replaced with “and.” 

You will not have constipation or diarrhea. You will have constipation that awakens in you cold-sweats and then you will have gut-wrenching diarrhea. When you've run through the gamut of nausea, dizziness, fatigue, anxiety, heartburn and digestive issues and think you’re coming up for air, a mouth fungus will crop up, and then a skin rash. And if you still think you’re in control of the parade, the labor pains and frighteningly profuse menstrual bleeding surely have yet to commence. 

But I get ahead of myself. I’ve only just stepped into the storm. Months of getting worse and better in spells lies ahead.

And then one day, 6 months from now, when everything but the baldness is behind me, I’ll sit down with my surgical pathology report and read a bolded comment that states,

No evidence of neoadjuvant chemotherapy effect is seen on the invasive carcinoma and DCIS. Tumor cell viability is >95%...

In other words, the chemotherapy did not appear have any positive effect on the cancer cells. It didn’t work.

Loving Letter: Dear Aunt Jen

Round I: Entering the Ring

I slip into the seclusion a truly ill person knows. Just me, confined to the bed day and night; just me, trying not to drown in the dark waters of drugs and discomfort.

In the months of ill health preceding my diagnosis, I dragged with fatigue. I would dream about entire days or weekends of lying in bed… longing for endless sleep and rest.

That is not the desire of a normal person. Our daydreams may include lazily sleeping a morning away or long afternoon naps, but there is usually something in between all the sleeping that adds to the appeal of the dream. I simply craved the sleep.

As the steriods preceeding the chemotherapy infusion start to wear off, I'm left in a haze that nastily grants my wish for continuous sleep. Drugged sleep and discomfort.  Discomfort and drugged sleep...

For my subsequent rounds, I will not so adamantly follow the prescription regime suggested to me; going forward, I will choose side effects over drugged haze.

~    *    ~

Coming out of the haze of Round I, about a week after the infusion, I am brutually eager to discover if my arthritis symptoms are gone. I've asked every doctor I've seen, starting with the OB-GYN who diagnosed me, if the joint inflamation problems are related to the cancer. Surely I have finally found the real cause of my health problems all-around! I mean really, how plausable is it that I would come down with two major diseases, almost simultaneously?

In spite of the tepid to downright discouraging responses I receive about the arthritis-cancer link, I persist under the thinking that they are related. The thought of fighting through the cancer treatment to return to the immobility and weekly shots of Spondylitis is more than I can handle.

Curing one will cure the other, I tell myself as a desperate mantra.

And after each round, each surgery, each of phase of treatment, when I feel the pain of inflamation creeping back into my ribs and hips, I tell myself it will simply be the next step where I'm set right.

Plane Trip to Terrible

The actual infusion process itself is not bad. It basically consists of sitting in a mildly-comfortable chair, hooked-up to an IV. It’s a lot like flying first class for 4 to 5 hours. You’re probably a little bit frightened but you’re fairly comfortable, tired but can't really sleep. You’re offered a blanket and juice. Awkward trips to the bathroom are the only thing you can get up for. And the experience is better when someone you like comes along with you.
  

Airplane Cabin

Chemo Infusion Center

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.