4 to 6 = 6

Amongst the barrage of un-lovely information imparted upon me at Medical Plaza 2nd Home, I am enlightened that “four to six rounds of chemotherapy” does not actually mean I have the chance of being done after four rounds. Rather, it apparently means four to six before my surgery. Six, is what they meant all along; two just may come post-surgery.

Thank you for this pleasant elucidation, roughly three months late.

I want to slap every last one of those doctors and nurses for not clarifying that I do not, in fact, have any chance of being finished after four rounds. (Not really. But somehow saying I want to slap them makes me feel like I'm expressing the frustration and angst I'm feeling.)
Setting my sights upon being done after four was futile.

Two more rounds; six more weeks, here I go.

Little H Starts School, Tips Over, and Compliments Eyebrows

We just enrolled our 2.5 year old in preschool for two mornings a week.

And so, with those 9 hours a week, Little H has joined the ranks of back-pack-owning, lunch-box-toting, rule-learning school children. He loves the excitement of being with the other kids – and playing with a toy trash truck there that he has claimed as his own. (If you ask him about his day at preschool, his answer will invariably include the trash truck he played with.)

One of the most remarkable changes of having a child in school is that he is learning things we didn’t teach him. He suddenly says and does things that we had no role in, which is especially significant at this age because they are such complete products of what they are taught. 

In the first 2 weeks, Little H came home saying “thank you” more often, without having to be prompted, singing a song about “clean-up time”, and saying “hate” for anything he dislikes, a word we’d carefully avoided around him, since kids are apt to use it liberally once it’s entered their vocabulary. He also picked up a game where he says, “Watch me tip over,” then waits a dramatic few seconds to build up suspense before crumbling to the ground and giggling. 

It’s an amazing honor to witness his growth and maturity through such simple things as remembering to be polite, knowing what it means to tip over, or even to express preferences by “hating” a particular toy, cup, or food at a given moment.

I’m not sure if he picked it up from Bobby or me, or heard it in some form at preschool, but last night he offered me a very mature compliment, one that he couldn’t possibly have known the perfection of.

I was leaning over him at bedtime, giving him kisses and saying goodnight. He, on the other hand, was continuing his end of the conversation without pause, chattering incessantly, when he stopped and put his hand on my very ugly, but comfy, beanie and said, “You have a blue hat on. It look nice on you. Mommy, it look nice on you.” It was red. But still, compliment accepted. I don’t think there is another soul alive that would tell me that unflattering sleeping beanie looks nice.

A few months later, I will lean over his bed in a similar evening routine and again receive an oddly perfect compliment. By the end of the 6 rounds of chemo, my eyebrows and eyelashes have grown thin. I remain grateful to have not lost them completely, (a fear I harbor throughout the process), but am a bit self-consciousness over their scarcity. With the classic innocence of a small child, Little H presses his head against mine, gives me good-night kisses, and says, “I love you Mommy. And I like you eyebrows.”

Perfectly random I’m sure, but perfect none the less.

The Beauty of a Skid Steer

Feeling chipper to be coming out of the chemo-stupor this morning, I ambitiously plan to enjoy an outing with my son, Little H. I load up the back of the car with the jogging stroller, sunscreen, water, and snacks and cruise off on the very short drive to the beach.

After saddling my son and supplies into the jogger - which very rarely sees a jogging pace - I head off down the pier at a moderate jaunt. I'm looking forward to taking in the fresh sea air at the marina.

Wait, what's that smell?  Not fresh, salty air but trash day with a strong undertone of rotting fish. Oh, come on ultra-sensitive, chemo olfactory senses; hold it together. The deep breathing that started as methodical quickly becomes more of an exercise in remaining calm. I keep moving. I will not vomit.

My body tires quickly; after a whopping 20 minutes, I’m scanning for a sandy spot to rest with growing fervor. Having only recently moved here, I don’t know my way around yet and have clearly headed in the wrong direction. Restaurant after harbor after large gated swimming pool after restaurant after hotel and I’m about to plunk my weary, sweating self down right in the center of the sidewalk and encourage my son to use his sand toys on the debris that’s skittering by in the breeze. Where is the beach?!?

And then it arose, right there out of the 78’ swelter, unshackling my son from stroller boredom: a construction zone, a young boy’s oasis.

 

I happily park myself on the adjacent cement, break-water wall, enjoying partial swaying-palm-tree shade, and dangle my feet right down over the “Do not sit on break wall” sign. Little H’s eyes are transfixed on the small skid steer moving the dirt around the site in front us.

It looks like we’re surveying the site of an upscale restaurant remodel, with the front entrance and landscaping currently being demolished. The area is not very large, the equipment small-scale, and the workmen only numbering in the few. But one is driving a four-wheeled construction vehicle, one is wielding a hose, and a couple are milling about with shovels and wheel-barrels. This is well sufficient to make my child’s – and thereby my - morning a merry one.

I peer down over my shoulder at the water lapping against the marina rocks and watch the crabs scurrying across the surfaces. The seagulls are screeching; the sun is shining. I take a long breath in and fill myself with satisfaction – and air that actually smells like the sea.

I am so pleased to be alive; to have my son; to not be working; to be healthy enough to be out enjoying this very moment.

I turn around to encourage my little one to appreciate the view and realize he already is, in his own way. Across from the sea, the hose water, the dirt, and the machinery is mesmerizing him. Not wanting to sit with my back to him, I turn to also watch the construction progress, only slightly begrudgingly putting the ocean at my back. 

A dump truck pulls in and drops a load of fresh dirt. A jackhammer starts up over in the corner. Not my ideal oasis. But if I look just right, past the unhappy teenager holding the dirt-covered hose, the stream of water he is splaying is creating tiny glimmers of rainbows. The middle-aged man in the driver seat of the skid steer is shaking his head with a good-natured smile as he waits for the boy to move out of his way. The guy with the wheel barrel pauses to put down one handle and raise his arm in a friendly wave at us. 

I guess this is beautiful too.

And isn’t that life? You show up expecting one thing, but get turned in a totally new direction. The choice is only to wallow in anger or bitterness at what you’re missing, or to work at appreciating what is front of you.

Empty Ultrasound

With my new hormone prescription, I begin a monthly injection of a drug that essentially shuts-down my lady parts, as well as an order for a pelvic ultrasound the following morning. 

Like a normal person, I associate ultrasounds with pregnancy.  

My first pelvic ultrasound took place 6 weeks after I learned I was pregnant with my son; it was a standard check on the viability and health of the pregnancy - and it was one of the most joyous days of my life.

We had been trying to get pregnant for several months, approaching a year, and were starting to get consumed with fears and yearning. I was extremely happy when that home pregnancy test was finally positive, but I was also nervous and set my eyes upon the first ultrasound, where they check for the heartbeat, as the real indictor of what was to come. (If a heartbeat develops on schedule, the chances of miscarrying decrease drastically.)

I couldn’t wait to see that tiny little heart pulsing on the monitor and was in a state of pure euphoria when it did. The memories of that joyous day are clear: what my little gummy bear looked like bouncing around in there, what I was wearing, how big Bobby smiled, the flavors of celebratory ice cream we ordered at the ice cream parlor afterward. It was beautiful; it was happiness.

The second such ultrasound of my uterus took place on week 2 of my second round of chemotherapy, under considerably less pleasant circumstances. After 4 days of unnaturally heavy bleeding, I was a deathly anemic cancer patient being checked for fibroids or other abnormalities that might explain my extreme reaction in response to the chemo’s alteration of my hormones.   

My mother and I sat in the waiting room amongst a slew of pregnant women and tried not to be cut by the sadness of my visit in contrast with theirs. This was a demon I had already faced - many times. 

My husband and I had just begun trying for our second child when my health took a dive and began the process of uprooting our life plans. Every medical center I have entered over the last 8 months has had an OB-GYN office within. It’s been cruel. 

I have jealously watched an unhealthy number of adorably pregnant women walk down hallways or enter elevators on the way to their check-ups. “That is why I should be here,” I think. Every time I look up from my little nightmare and upon a round belly, I am tormented with longing. I want to slump down in a ball and scream, “Give me what she has!”

So, as it was, I was far ahead of my mother in coming to terms with that unpleasant contrast on this morning. Nonetheless, nothing prepared me for the torment I was about to endure upon getting the ultrasound.

I entered the little room and climbed onto the table, just as I remembered doing for my previous such visit. The technician, the doctor, and a third woman in scrubs all peered at their computer monitor at my side and discussed what they were seeing in my insides.

My head turned to the opposite direction, where a second monitor was set-up for patient viewing. I was curious to take a peek in there too, maybe attempt to follow their conversation. (Creative measures are necessary in withstanding the dullness of medical appointments.)

When my gaze hit the screen, a stab of sadness sliced into me so completely I stopped breathing. There it was, that same round sack, the inside of my uterus, in black and white, up on the screen. But it was empty. Painfully empty; no gummy bear bouncing around, no tiny pulsing heart. No joy.

I had to look away.

My heart is breaking.

Another Day of Terrible

Capping the worst couple days of my eighteen weeks of chemotherapy, I spend Monday in the Oncologist’s office, bleeding and miserable in a crowded waiting room.

When they finally manage to squeeze me in and squeeze some blood out of my finger for a hemoglobin test, I am informed how severely low on the red life-force I am. A blood transfusion for the following morning is scheduled.

Passing me down the line, I am sent to a neighboring city to see a Gynecological Oncologist who can work with my hormones to stem the bleeding (this round and during future rounds of chemo.) 

We drive to the OB/Oncologist’s office, have another long waiting room stint and I'm told the doctor is actually in the same building we just came from. Oh, of course! This is my life now.  We drive back, pay for parking for the third time, and, shockingly, have another hour in a waiting room.

I’m starting to lose it. Waiting room number 3, hour number 6, emotional breakdown number 1.

I’m working at passing the minutes to turn the day into tomorrow.

Lacking blood, energy and patience, I finally meet the newest specialist to my growing team of medical experts. I can’t bring the corners of my mouth to upturn into a smile as he introduces himself. Just give me the prescription. The patience has been bled right out of me.

As I’m standing in front of the building, waiting for Bobby to pick me up, two women stop and comment on my “amazing complexion.” Good Lord, I’m about to keel over right here on the sidewalk for lack of blood. But I’m glad it shows flatteringly in my pallid complexion.

My life really has become really, really odd.

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.

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. 

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.

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.
 

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.