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.

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.

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:

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.

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 is poor service so acceptable in the medical profession? As though the experience of illness is not unpleasant enough, ridiculously long wait times, inaccessible providers, and costly mistakes are frighteningly common.

And the waiting takes place in such awful locations: usually hot, small rooms with overly bright fluorescent lightening. The worst is when you do your time in a crowded reception area - aptly named a Waiting Room - only to be taken into the exam room (with short-lived enthusiasm) and then are made to wait longer there. 

In the restaurant world there is a rule that customers should not be 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. 

I guess no such rules are needed in the medical field. They'll trick you with waiting in one room and then move you to another, only to wait longer, in private and with a false impression things are moving forward.

Oh, do I sound bitter?  

Sorry, this is my life now. 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. 

Just waiting. To feel like my life is my own again.

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.