1.31.2013

Baby Dreams

Standing in our driveway, I look up into the dark sky. Past the maze of telephone wires and streetlamps, I gaze into the stars. I am praying for the child I do not have, as I so often find myself doing these days.

Anyone who has ever faced difficulty getting pregnant, miscarriage, or any other challenges to having a child knows the deep and consuming pain this can produce.
It took me nearly a year to get pregnant with my son. I was approaching obsessed when the pregnancy test finally showed positive. But that year of longing and impatience was just a flicker compared to the fire consuming my thoughts now.

Women with tumors that are hormone-receptor-positive or "estrogen sensitive" such as mine is, meaning the hormone estrogen helps the tumor to grow, are often given an adjuvant therapy (post-primary treatment) to reduce the risk of return. This is usually in the form of an oral prescription that interferes with the activity of estrogen, to be taken over a 5-10 year period – during which pregnancy should not occur, as it would be harmful to the fetus.
So I have 5+ years before I can entertain the possibility of getting pregnant. My children would be spaced with nearly 10 years between them, at that point. Not to mention that I apparently may no longer even possess the ability to conceive, thanks to the chemo. And maybe my body has now been through enough; maybe the higher levels of estrogen from a pregnancy equal higher possibility of recurrence. [This is unknown.] And, would I want to risk passing on a gene mutation for cancer susceptibility to another child? 

My oncologist tells me I should be grateful I have a child already. Which I am. To the depths of all that I am, I cherish and love my son.

But this does not pacify the yearning to be blessed with another child to love so. I feel like I've been told to just be glad I have one ear, when what I really want is two. Of course I'm grateful to have one, probably all the more so. But I really like my ear and still think about having a second.
As I am eeking my way through the cancer treatments, I continually look ahead to what will lie in the thereafter. Can I ever get to a place where life feels normal again? ...Where the ramifications of having cancer are no longer pervasive? …Where my goals and dreams have the possibility of being met?

I read about adoption late into the night. I seek out people with experience adopting. I call private agencies and sign up for public, county-services information sessions.
My husband and I have discussed the valor of adoption since we were teenagers, dating and dreaming about a life together. We were always in agreement that the option should be heavily considered. The world is an increasingly crowded place with decreasing resources and abundances of need for compassion and outreach. How better to save a life from lack than to bring a child into a family of love?

But my understanding of the practice is naïve and simple. It doesn’t take long for the adoption information to get difficult. Our options become clouded by exorbitant price tags, lengthy waiting lists, disqualification by having a history of cancer…

I will not give up. I will not live the rest of my life so bitterly sad that cancer stole my second child from me.

I think about the fourth member of my family with regularity, expectation, and anticipation; she or he will arrive one day and complete us.

1.29.2013

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.

1.24.2013

A Model of Imperfection

When a friend asks if I will participate in a photo shoot for a breast cancer service announcement, and it happens to fall on an afternoon when my husband can be home with Little H, I agree. I’m a little hazy on the facts of what’s going on, but it sounds like a fun way to help out.

A wealthy Texas oil man is funding the project and is present at the shoot. His lovely wife, who screams money from her jeweled ears to her designer-shoe clad toes, accompanies him. Both are very kind.
8 of us “survivor” women are gathered to provide our faces. Actually, make that 7 survivors + me. I think I’m still just “a patient,” not yet having survived the ordeal in its entirety and earning the title. The other women all have their hair – and lives back. They are also 20-40 years my senior, as is common at these events. But they are all now my friends, dear to me for our shared experiences.

As a fairly tall and thin gal, I dabbled in modeling in high school. Well, dabbled ever so lightly, until the day came my agent told me I had to lose weight or I wasn’t going to go anywhere. That would be when I decided where I wasn’t going to go was back to that agency ever again. Who needs anorexia at 15?
Now here I am, some 13 years later, in cheap jeans, very little make-up, (in wild fear of losing lashes, I try to avoid touching my eyes, let alone putting make-up on them), and bald/scarf on my head. I look pretty awful and my body feels terrible as I enjoy the side effects of 2 blooming diseases. But all the same - actually, very little is the same, but you get the idea; I'm taken back to my fleeting modeling days in front of the lights and cameras. Oh wait, I'm afraid there's one more detail worth mentioning: I am totally sweating. I mean, visibly sweating through my thin, light-colored shirt. I don the very stylish, the very classy hoodie for my entire shoot, to hide this.

What can I say? I’ve been reading up on the harmful nature of aluminum in anti-perspirant and have been on a quest to use only the natural stuff. My most recent find masks any unpleasant scent, but certainly does not hinder the act of perspiring itself, or so I notice as the wet rings form around my armpits in the hot, Hollywood studio warehouse. Charming.

At the sickest time in my life, in a hoodie covering sweat rings and lacking head hair, I model for big time Hollywood guys and one big time Texas guy and feel a little bit lovely.

 
                   
 
 
 
If you too would like to sweat - but not smell - I encourage you
to switch from an antiperspirant to a deodorant only.
My favorite is: Crystal Roll-on.
 
Here's a good article to start with
for the rub on antiperspirants in general:

1.22.2013

The 5 Year Rule

  
Poor health, poor finances, infidelity, crime, death, miscarrige, divorce... the pains of this world are many.

As I age and garner maturity, the process of discovering so many different people's struggles deepens my perspective. And certainly, as life has brought me down upon my face, I understand that suffering creates a broad empathy. My hurt seems to extend across the great many difficulties embedded in humanity; I feel and understand the sadness of others so much more than ever before.

I once heard there’s a 5-year rule to evaluating circumstances, especially those which are tragic. We have to lift ourselves out of the fear and pain of the moment and imagine a future in which we can understand the occurrence, possibly even be thankful for how it has changed our course. If we can take tragedy or calamity and use it as a turning point or a source of meaning, we can perhaps master happiness. 
We don't understand why so many things happen, but perhaps, in looking ahead, we create a more Godly perspective - one of slighly greater understanding.

In the throes of life’s deepest pains, if only we can cast our eyes ahead, believing there will be peace, if not total understanding - and attempting small joys in the meantime.

1.17.2013

Support

My mother throws away our kitchen sponge, replacing it with a new one from the cupboard every time she comes – which these days, is quite often. She usually changes out all our towels and starts a load of laundry much too small to be energy-conscious. She is chipper and chatty first thing in the morning, in spite of my being groggy and grumpy for the first half hour of wakefulness for the past 29 years. She gets lost almost every time she drives here, and she spoils my son rotten.

My mother shows up after every round of chemotherapy, surgery, or important appointment, making the 2 hour drive to be with me and to help me meet the demands of my life. She brings coolers of food and prepares 3 meals a day. She wears pink breast cancer bracelets around the clock and tries very hard not to cry in front of me.

She takes care of me, in her own perfect way.
My mother and father in law also wear pink bracelets continuously. I am touched every time I see that bright rubber dangling from their wrists. My husband’s sister rents me an electric reclining chair the day I came home from my mastectomy, and drives the 3 hours to deliver it. My brother and sister in law who live out of state offer to help pay for my ever-mounting medical expenses, in spite of not being especially well-off themselves; they offer to make the 20 hour round-trip drive out to pick up Little H should I need a break; and, in a gesture one doesn’t offer lightly, they consider uprooting their lives and moving to be near us. They have 4 children. My brother is extremely busy working in a prestigious government job and not far enough along in his career to easily be making suggestions about where he should be located. They own a home. They were willing to change everything – for me.
There is so much beauty in the love we show each other. 

As I’m dragging on the floor, literally or figuratively, as I’m crying myself to sleep in a quiet and lonely brokenness, their love and compassion will be a light in my darkness.

1.15.2013

A Good Friend in Bad Times


On Tuesday evenings, I spend two hours with my friends at The Cancer Support Community. Other newly-diagnosed women and I sit in a circle of cushy chairs and couches and talk about coping and suffering. We cry a little and we listen a lot.

I didn’t want to join a support group. I wanted to be at home enjoying my family with my limited energy, not going out to listen to other people’s woes when I am already heavy with my own. But thankfully, I was cajoled into trying it out.
The ladies teach me so much about what is to come; I learn from their experiences and advice over the coming year. I do not feel quite so alone.

Tonight we talk about support – the good and the bad that we each receive. From my own experiences and from those of my group, please allow me to share a brief summary of some suggestions for showing support to someone going through a major adversity:

v     Be a friend and be present – What would you want your friends to do for you if you were the one in the trying life situation? Don’t be shy, jump in there and do, say, and be a kind giver. Whatever you do, don’t say or do nothing.

v     With consistency – Call, stop by, send cards with consistency; prove that your concern is not fleeting, but real and available.  And don’t expect much in return amidst their crisis, even if that means unanswered emails or unreturned phone calls. Persist anyway.

v     Bring food –  Provide healthy meals or snacks; fill their freezer; take them out to lunch; bake them cookies. Basic needs become a major stressor when life is hitting you with hard stuff. Food, help cleaning, running errands, etc - any help maintaining the practical is valuable.

v    Listen – You may worry that you don’t know what to say, but actually, you probably are needed more for your ears than your mouth. Let the person vent without feeling like you need to interject your take. Your questions show your concern.

v     Uplift - If someone genuinely inspires you, tell them. Your encouragement can be more helpful than you might think. Offer this gesture to those close and distant alike; you don’t have to know the person well to tell them something positive. Some of the most moving gestures come from complete strangers.
There it is, just be considerate and consistent. Oh, and bring food.


1.11.2013

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.

1.09.2013

Transfusion

Sitting in a cubby and hooked up to an IV, a strangers’ blood is flowing through my veins.


I’m nearing the fourth hour in this chair; the second bag of blood is dripping down into the tube attached to my arm.
This, as much as anything else, convinces me that I am in fact a sick person. After all, only seriously ill people get blood transfusions. I will receive two this week. Four bags of donor blood will restore me over the course of the eight hours I spend in the transfusion room.

Bobby and I are now so deeply entrenched in this life of medical rottenness that it doesn't phase us for me to come here alone. While the seriousness of the scenario does resonate with me, practicality overrides emotions. We have a young son to look after and my husband has a job to maintain. With every appointment and procedure, I can't have a babysitter at home and a friend at my side.

My mother disagrees. With a long drive, she is there to sit through the next one with me.


Today, there is a small man in the IV chair next to me; he's in for his weekly dose of a bag of blood. For some reason this appalls me. I always envisioned blood banks collecting for car accident victims and emergency surgeries. I never thought about “regulars” appropriating the supply. That this man is sick enough to need a transfusion every week does not greatly impress upon me at this point in my life. Instead, I'm thinking more along the lines of, Hey man, you're hogging the stash. Clearly, I need some of this blood to get to my brain.

According the Red Cross, some 5 million patients receive blood in the U.S. in a year. Many sickle cell and chemotherapy patients require frequent transfusions.

On behalf of the regulars and the emergency 1-timers alike, thank you to anyone who has ever donated blood. Such a simple act saves lives.




To find a blood donation location near you, click here:


1.07.2013

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 we’re 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.

1.04.2013

More On Waiting


I spend a disgusting amount of time waiting for doctors. Waiting for them in the reception area, waiting for them in the exam room, waiting for a phone call, waiting for a prescription to be called in …waiting for answers.

Why does the medical profession have such a strong propensity to provide poor service? As though the experience of illness or health problems is not unpleasant enough, ridiculously long wait times, inaccessible providers, and costly mistakes are frighteningly common.
Waiting for medical procedures usually takes place in hot, small, areas with overly bright fluorescent lightening, be it a crowded waiting room in the reception area, or, when they trick you and take you back into the actual exam room and then make you wait there. 

I held waitressing jobs through most of college. There is a restaurant rule that customers are not seated at a table until the server and the kitchen can provide them with timely service. People tolerate waiting to be seated but as soon as their backsides hit the booth, they want a menu, a drink, and their food to be ordered and arrive in an appropriate progression. Restaurateurs know, even if a table is available, don’t seat it until the customer can be given prompt service. 
This rule obviously does not carry over into the medical field. Doctor’s offices like to deceive you; they’ll make you wait in the reception area and then give the impression things are moving forward by taking you back into the exam room – only to leave you to continue your wait in private. 

The dullness of those neutral walls… the sterile smell… the smallness of the rooms… the stolen hours from my day… Fifteen minutes is an understandable wait time; thirty is very inconvenient; forty-five makes me insane; sixty or more makes me cry. 

1.02.2013

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. Unbelievable!  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 odd.