Answers Before I Call

Water terrifies me.  Rip tides. The deep end. Whirlpools.  If I should fall in, who will save me?

Water terrifies me. Rip tides. The deep end. Whirlpools. If I should fall in, who will save me?

Pedro’s cancer relapsed one month after he went into remission—he went from a healthy-looking sick guy to a walking skeleton in three short weeks. The day a bed on University of California, San Francisco’s  cancer ward opened up, Pedro’s wedding ring fell off when he stood up.

After a series of miracles and a late-night arrival at UCSF, Pedro slept fitfully in a hospital room with nothing but a thin curtain separating him from another patient. The clock struck midnight and I relaxed long enough to realize I didn’t know where I’d spend the night.

A nurse informed me that since Pedro shared a room, I should have left hours ago. I passed an uncomfortable night on the hard floor of a waiting room with the minute’s news spilling out like endless vomit from an overhead television.

At first light, I wandered down the street near the hospital through the grey fog, looking for a place to eat. A Starbucks sign down the street beckoned like a beacon of hope—a place to relax and collect myself, I thought.

Then again, maybe not. The city Starbucks held court in a small corner of an office building. No quiet music. No comfortable chairs. I sagged. At least they sell coffee and scones.

I wandered around, nibbling my scone while waiting for visiting hours to start. When they did, I spent the morning helping Pedro eat his breakfast and chatting hopefully with him about the treatment he would receive (while inwardly fretting that nothing had happened yet to make him better).

After lunch, two interns showed up to administer intrathecal chemo via a spinal tap. When they’d done the lumbar puncture and tried to measure Pedro’s spinal fluid, champagne-colored fluid bubbled out over the top of the extension tube. The interns looked at each other, but I couldn’t interpret their look. Doubts circled my confidence like piranhas in a murky pond. He would receive help here, right?

An hour after the unappetizing supper tray arrived, Pedro started to convulse and choke. I ran out into the hallway screaming, “Somebody help!” then dashed to Pedro’s side and hunkered helplessly by his side and watched red pour out of his mouth while personnel packed the room. Waves of words washed over me. (more…)

Who Knew What These Hands Could Do?

hands 008
I’m joining Lisa-Jo Baker and friends for another Five-Minute Friday exercise in writing and bravery. This week’s prompt? Hands.

Who could’ve ever guessed what my hands would be called upon to do? Who could have ever imagined what they could be capable of doing?

My greatest fear, as a parent, was that I would never be able to handle anything bad happening to my child…that severe illness would render me useless and fallen apart, as I never wanted to have a part of any kind of medical situation. And anything other…uh…well, we just couldn’t even discuss that. I would never, ever be able to handle anything happening to my child. It was as clear as that in my mind, and my hands shook at those kinds of thoughts.

Who knew cleaning up vomit would become so ordinary that I’d no longer have to leave the room for a minute to take a breath, or that these hands could clean up other unmentionable messes made more unmentionable by the powerful smelling drugs that were administered with regularity?

Who envisioned that these hands would learn to change tubes, plug in hep-locks, flush a line or de-access a port? Who would have pictured these hands holding down a child while someone tortured him with needle after needle? Who imagined that these hands would force foul tasting pills ground into fouler tasting paste down a reluctant throat and then chase it down with pudding? Who could have possibly guessed these hands would wipe away tears that were pink from the weakened blood that was seeping into places in my boy’s body where it didn’t belong?

Who knew these hands would be called upon to pat a back during dangerous fevers or rub a bald head that ached from the effects of a spinal tap? Who could have realized these hands were capable of waving goodbye to either my girls, or my boy, and always my husband, for days at a time as we took turns care-giving in the hospital?

Who pictured that my hands would build towers out of dominoes, over and over again, so that lethargic eyes would have something to watch and a fatigued hand could knock them over? Who would have ever believed that these hands could possibly learn to take a temperature, and be accurate within 1 or 2 degrees, without the aid of a thermometer?

Who knew that these hands would be required to wear gloves in order to help a tired boy go potty because his urine was so lethal it would burn my skin, and what was even worse, that it would be my hands that helped to put that intense poison into his little body?

Who knew my hands would ever have those things demanded of them, and who knew that they could do all that?

Too Close for Comfort in the ICU

Don’t Wait for an ICU Visit

I leaned in close as Pedro struggled to form words around the tubes sprouting out of his nose and mouth. His hands, retained by cotton cuffs, fluttered uselessly at his sides. His left hand stilled and his right hand looked as if it was writing on a tablet of air.

The lymphoma cells froze Pedro's face and prevented him from swallowing.

The lymphoma cells froze Pedro’s face and prevented him from swallowing.

“Can someone PLEASE give me a pen and a piece of paper,” I called out. My voice sounded harsh and desperate in the quiet bustle of the ICU room, and I noticed that Pedro’s heart rate had increased.  I tried again, this time willing my vocal cords to form the words carefully. “I think he wants to say something, but he can’t talk. He wants to write something.”

The ICU nurses looked at each other and shrugged. One dug in her scrubs and produced a black sharpie, and another found a few sheets of blank paper and a clipboard.

“We’ll be back in five minutes,” the first nurse said when she finished untying the restraints. “Don’t let him pull the tubes out.”

“You’ll need to leave when we come back,” the second nurse added. “We have to do our work and family isn’t allowed in the room at that time.” (more…)

Firsts You Never Wanted

Nothing prepares you for seeing your child's face on the front page of the newspaper.

Nothing prepares you for seeing your child’s face on the front page of the newspaper.

Have you ever been part of a prayer chain and you get a call, or an email, and you think, “Oh my, that poor, poor family. That’s awful!”

Have you ever heard a little blurb on the news, and felt a stab of pity for what someone else’s trials?

Have you ever felt as if you were part of a dream, and that upon waking, you’ll need someone to comfort you and assure you it was all a dream, and that you’ve woken up to a much better reality?

Have you ever watched Oprah, and listened, spellbound, to something a family has gone through that sounds not only horrendous, but emotionally and physically impossible, and just too unreal for anyone?

Have you ever passed one of those jars on a store counter that says, “Please help Jessica! She has cancer, and her insurance ran out. She needs a bone marrow transplant soon, and has no funds. Please donate pennies, nickels, dimes and quarters! Help Jessica!”

Have you ever heard someone describing a medical situation and think to yourself, “Wow, I could never handle that…I’m so glad it’s not me.”

Have you ever listened, with complete attention, to someone describing a detailed horrific medical condition; your mind spinning out of control, thoughts whirling in all different directions. And suddenly you check back into the diagnosis, and you realize, “Oh…wait…the doctor’s talking to me!”

No one writes a manual or guidebook that tells you how to handle suddenly becoming:
• the subject of a prayer chain
• the central feature on the nightly news
• your worst dream—without the ability to wake up
• a statistic worthy of being a guest on Oprah
• having a jar with YOUR name on it on the counter
• hearing the medical diagnoses; checking back into the conversation, and realizing; “That’s me!”

When those first moments pass and the realization slams into your chest, “I am the statistic. I need the prayer chain. I have an intense struggle ahead and I have no idea what that looks like. This unreal stuff IS my reality.”

Nothing can prepare people for the reality of having a child with cancer. Nothing. Even though nothing can prepare you, there’s someone who will sustain you (tweet this).

Purple T-Shirts and Folgers Make Me Cry

I do NOT look like this when I'm crying.

I do NOT look like this when I’m crying.

I don’t cry pretty. When my eyes leak, snot immediately oozes from my nose in sudden sympathy and I’m mess within seconds. Which explains why I had to turn the vehicle off onto a side road that crisp Saturday morning whilst driving down the Silverado Trail in Napa, California’s wine country.

Somehow, I’d ended up in the middle of a foot race, and I saw a group of runners sporting the purple Team in Training bibs and t-shirts running in solidarity down the road in front of me. I knew all about Team in Training—I’d signed up to train and run just over a month before.

The purple shirts made my eyes sprout tears. By the time I had pulled off the road, I could no longer see. I reached blindly towards the glove box in the borrowed vehicle and hoped that the owners were the kind of people that kept tissue or unused napkins from fast-food drive-throughs on hand.

Bingo! I thought as I grabbed a wad of napkins and tried to clean up my face. I didn’t have time to wallow in self-pity beside the road. Pedro needed his meds, and the closest pharmacy with the fastest service happened to be a 45-minute drive from his brother’s house (where we were staying so that Pedro could see an oncologist and schedule the initial surgeries and chemo because our small-town only had one oncologist at the time, and Pedro wanted a second opinion and someone with experience in his type of cancer).

Usually, Folgers commercials set me off (I was pregnant during the first Gulf War and their poignant (but cheesy) commercials of soldiers coming home and surprising their parents with a cup of freshly brewed Folgers brought me to tears—both then and now). Now, evidently, Team in Training jerseys could do the trick.

Maybe the whirlwind weeks leading up to my breakdown over purple t-shirts contributed to the situation. In three short weeks Pedro had morphed from a fun-loving elementary school teaching-principal with a sore shoulder to a pain-wracked zombie with a huge lump on his neck (the lymphoma cells multiplied at a dizzying speed).

I’d lost track of our children for days on end (they were with family friends…I think), I couldn’t remember the last good night’s sleep I’d had, and my medical vocabulary had increased exponentially overnight. We had also celebrated Sarah’s eighth birthday with a party (complete with creating sock-puppets, staging a puppet show and making a homemade birthday cake). Organizing doctor’s appointments and researching non-Hodgkin’s Lymphoma ate up all my spare time between my full-time teaching job.

I had held myself together for as long as I could, but something about those strangers, raising money and racing to support the Leukemia and Lymphoma Society brought me to tears. After blubbering in the anonymous bubble of the truck cab for fifteen minutes, I slowly pulled back on to the road and looked for the closest cross-road that would get me off of the race course. I couldn’t risk seeing more runners—which would probably make me cry again, and the glove box was out of napkins, which meant I would have to use my socks to clean my face up before I went into the pharmacy. Nothing’s ickier than wearing running shoes without socks.

Come to think of it, what’s really icky is the overwhelming sensation of a loved one’s unexpected cancer diagnosis (after all, Pedro’s shoulder hurt—that should mean a sports injury, not cancer, right?).

That drive to town was the first time I had been alone in over two weeks. If you’re a new cancer caregiver (or under stress of any kind) I highly recommend some quality alone time on a regular basis. Find someone to watch your kids, your loved one, your family or whatever is preventing you from time alone and grab that time alone. Have a good cry. Listen to music as loudly as you want, go for a hard run—anything to help you get your head back in the game. If you’re not feeling healthy, how can you care for someone who is sick?

By the time I reached the pharmacy, I felt purged and ready to put on my game face. We were in it to win it and I didn’t have time for more tears. Of course, I chose a different route home to stay off the racecourse. Just in case.

 

I STILL HATE PICKLES
I’m linking up with Kirsten Oliphant for more Not So (Small) Stories. This week we’re working on the hook and our writing prompt is ‘drive.’ Join us!

Tub Thumping (Theme Songs in the Cancer Ward)

In which I discover that Pedro's cancer-fighting theme song is really a drinking ditty.

In which I discover that Pedro’s cancer-fighting theme song is really a drinking ditty.

I get knocked down, but I get up again!

Chumbawamba’s lyrics pounded out of the tinny CD speakers as the doctor came by on rounds. Pedro played the song after every round of ravaging chemo as a litmus test for hospital personnel. If they smiled, they were the good kind of doctor—the kind that didn’t take themselves too seriously.

The nurses usually laughed, and the song seemed to calm the nerves of fresh-minted interns. Of course, Pedro feeling well enough to play his theme song meant the patient was doing well—what doctor wouldn’t smile?

I leaned over and turned the music down so I could hear the doctor.

“Looks like you’ve been doing laps,” he said, glancing at the whiteboard where we kept track of Pedro’s daily walks around the cancer floor.

“One mile today.” Pedro nodded. Walking had never been Pedro’s preferred form of exercise—mountain biking, dirt-bike riding, windsurfing, and sailing kept him busy in his spare time. Until now. Exercise without adventure was just a burden. It hurt so much to walk laps around Eleven Long with him.

He: holding the IV pole loaded with saline, morphine, platelets or blood and a bendable magnetic dog named “Farthing” given to him by a sweet intern as a last-minute birthday gift.

Me:  shuffling at his pace, smile loaded and ready to aim.

He:  step by step, determined to do what he could to fight cancer, reduce the meds, get well, go home. Each step inspired by Psalms 18:1-6 carefully copied on notebook paper by our youngest daughter and taped to his IV pole.

Me: slow pace, slow conversation, mind moving at warp speed solving all the problems of our past and future, weighted down by the world of burdens, bills, work, and what-happens-nexts. Cancer rests for no one.

The doctor left; the nurse finished her tasks for the moment. But Pedro wanted to hear ‘his song’ again. I found the right track and pushed the play button. In the lull of busyness, I listened, really listened, to the lyrics for the first time. Up until now, he’d only played the introduction, and I had never heard the song in its entirety. I doubt he had either, for the angelic voices in the chorus caught me off guard.

This was no cancer-fighting theme song! It’s a song about drinking!” I thought as I tried to muffle my hysterical laughter (we were in a hospital, after all) while listening to Chumbawamba lament the woes of drinking too much,  “Pissing the night away…

“Some nights, that’s the truth of the cancer ward. Only it’s usually toxic urine that must be measured and recorded and dispensed with by a haz-mat team.” 

I hit the ‘stop’ button and turned to tell Pedro what I’d discovered, but his soft breathing signaled that he’d fallen asleep.  I would tell him later, during our next shuffle around the cancer ward.  And then we would laugh hysterically together, and then laugh even harder when everyone wondered what was making us laugh.

 

This post is part of the Not So (Small) Stories: Fourth Edition–where we write about ‘song’.
I STILL HATE PICKLES

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What’s Love Got to Do With It?

Siblings snuggle on the hospital bed.

Siblings snuggle on the hospital bed.

Well, okay, maybe my children aren’t perfect. Maybe they fight and argue, and maybe when Karina confessed to pinching Andrew when asked why he had those bruises, I believed her! Poor thing, we didn’t know the bruises were actually from cancer.

Both girls were there when Andrew cried bloody tears, and both girls experienced the shock of a cancer diagnosis, when anemia or just about anything else was expected. But no matter how you look at it, Andrew is still the little brother and, well, let’s face it—he can be obnoxious sometimes. But it sort of evens out in the end, because Larissa can be a little bossy and Karina can be just a tad whiny!

But you know what? Maybe my children are pretty cool, too. Maybe they fight, but they also stick up for each other at times, and the girls’ ability to put up with this whole leukemia situation has been pretty amazing.

Three days after diagnosis, we were already sick of the hospital and Andrew was thoroughly missing his sisters, although he wasn’t quite ready to admit it. Whenever I talked to them on the phone, though, he would struggle up and hold out his hand for the phone.

That evening I held the phone up to Andrew’s ear because both his hands and arms were sore from needles and/or filled with tubes. He told them all about his “pokes” and how it didn’t seem fair, but he was OK. He described to them the “squeeze thing” (blood pressure cuff) that “really hurts, but doesn’t REALLY hurt.” Suddenly I saw his face light up. He closed his eyes as though savoring the best ice cream in the whole world, sighed gently, smiled and said softly into the phone, “I love you, too.”
This week I’m linking up with Kirsten Oliphant and friends for story time.  If you’d like to join us in crafting a story each week, or even occasionally, click here

I STILL HATE PICKLES

Sink or Swim: Cancer as a Second Langauge

Caregiving often feels like drowning.  Tips to help you learn to swim.

There aren’t many ‘lifeguards’ in hospitals, but these five tips can help you learn how to swim.

When cancer strikes, it’s rather like being deposited into a foreign country (where no one speaks your native language) with nothing more than a small suitcase and none of the local currency. Just like they say about language immersion programs, you have two choices: You can sink, or swim.

Evidently, I’m a good swimmer, because within three months of Pedro’s initial diagnosis, hospital personnel would ask me, “So, are you a nurse?” Or even, if I sounded particularly bright, “Where did you do your residency?” I even received the employee discount at the local hospital because the cafeteria workers assumed I worked there (I found this out when one of the cashier asked for my employee card and when I told her I didn’t work there, my cinnamon roll cost seventy-five cents more than it had the previous week).

My basic survival skill, being quiet and trying to look intelligent, evidently fooled a lot of people. Soon, I could toss words like ‘intrathecal,’ ‘monoclonal antibodies,’ ‘methotrexate,’ and ‘Rituxan’ around as if they were part of everyone’s vocabulary.

But deep down inside, I felt like an imposter. I had no idea what was going on even though I knew exactly what was happening. Learning the lingo allowed me a sense of control, but in reality, I reminded myself of a hopelessly lost ESL student.  But I swam, I acquired and I ‘learned cancer.’

***

In fact, I reminded myself of one of my students, who stared at me out of brown eyes widened by fear.  Her gaze bounced between me and the other students seated in a circle.  I glanced at her chart—Rats, her native country was Bangladesh, and there was nothing I could do to help ease her transition into her new classroom in her new country. (more…)

Four Tips for Handling the Long Haul as a Cancer Caregiver

Friends taking Andrew for a 'stroll' in a wagon.

Nothing beats the kindness of friends and family who volunteer to entertain a sick child.

Pastor Carl gently pulled the wagon up over the edge of the sidewalk, trying not to bump the worn-out boy in the facemask who rode in the back. Shortly after Andrew returned from his first hospitalization, Pastor Carl dropped by for a visit and offered to take Andrew for a walk. Andrew didn’t really have enough energy for that, so we sanitized the wagon, bundled him up tightly and put on the mask—and he got to go outside!

After the ‘walk’, Andrew went inside to nap, and the pastor stood outside on the steps to check on us. My husband and I chatted with him and answered questions about our courage and our outlook. Our answers were easy; people had been so amazingly supportive! We had cards and notes, prayers and gifts – support from every corner of the world. It was really amazing and an incredible gift. We felt blessed and loved.

Then Pastor Carl deflated our optimism, “Guys, you know this won’t last.” (more…)

Signs Someone is Drowning (and it Could be YOU!)

Look around. Do you see any #caregivers drowning in plain sight? http://wp.me/p2UZoK-7c via @blestbutstrest

“Throughout the Instinctive Drowning Response, drowning people cannot voluntarily control their arm movements. Physiologically, drowning people who are struggling on the surface of the water cannot stop drowning and perform voluntary movements such as waving for help, moving toward a rescuer, or reaching out for a piece of rescue equipment.” On Scene, The Journal of U.S. Coast Guard Search and Rescue

Projecting

Although it happened 12 years ago, I still remember as if it were today.

I worried about Sarah. She seemed to take Pedro’s cancer too glibly. She seemed detached. She never had problems for me to solve, or little worries to share with me at bedtime. She’d never been a complainer—she was always self-sufficient and happy.

Her teacher surprised me when she said, “Sarah seems really angry.”

“What?” I asked, arching my eyebrows in disbelief. “Sarah? What does she do?”

“Well, it’s not that she yells at other students, or even gets mad at them,” her teacher replied. “It’s more what happens over small things.”

“Like what?” I’m sure the teacher was taken aback by my interrogative tone. I didn’t usually act so bristlywhat was wrong with me?

“For example, when Sarah falls down on the play ground, she’ll stand up, stomp her feet and cry—when we try to find out if she’s ok, she brushes us off and acts even angrier.”

“Oh,” I explained, “Sarah’s never been great at sharing her feelings. She’s probably angry that she had any reaction at all—after all, she’s eight and probably thinks she’s too old to bawl over a bruised knee.” I excused myself and hurried away. I had reason to worry—I just didn’t want to talk about it with someone else.

Sarah must be projecting—something I’d heard about, but was positive I’d never done. I wondered about the solution, but never got around to researching it. After all, Pedro was improving and this would soon be a memory from our past.

***

School let out shortly after our conversation, and we tried to fill our summer with good news and healing: a fun trip to Yosemite combined with a chemo appointment in California (where he was declared ‘officially in remission’), a visit with the girls’ best friend in Nevada, a family reunion, a visit with favorite friends in Washington, and then a week at camp.

On the way back from camp, we bought six lugs of apricots. Just days after returning home, Pedro landed back in the hospital, and this time, the news shocked us: Relapse of his non-Hodgkin’s Lymphoma with central nervous system involvement.

I had all those apricots to deal with. The girls spent time at a friend’s house (I’m actually unsure of this detail—I know they were with someone safe, but I was so worried about Pedro that I can’t remember who’s house they were at). Every afternoon, I would slip away for two hours while Pedro rested, and rush home to the apricots.

I had apricot jam making down to a science. I would sterilize jars and heat up the water in the boiler while sorting and pitting apricots. Next, I would whiz the apricots together with some pineapple in the blender, then dump it into a kettle and bring it to a boil and add the sugar, pectin and spices. Within two hours, I’d have ten or fifteen pints of jam sitting on my counter.

The whole time away, I felt guilty—I should be at the hospital with Pedro. I should be with the girls (where were they today?). While at the hospital, I felt guilty about the apricots. We’d spent good money on them—I couldn’t let them go to waste. At night I would sniffle a few quiet tears while thinking about the apricots.

In the morning I would cheerfully inform Pedro of my jam progress and let him know that I’d be gone for a few hours in the afternoon to run a load of laundry and make some more jam. I tried not to notice the pounds melting off his once-fit frame.

While making jam, I would find tears leaking from my eyes and blame residual laundry detergent and a casual wipe to the eyes as the reason for my tears. The fact that the state of Montana didn’t have enough methotrexate to administer chemo in the prescribed amount from his California oncologist concerned me.  How long would it take to ship it in  from neighboring states?  Did I need to go on a road trip and pick it up myself?  That wouldn’t work, though, the apricots might rot.

I ran out of jars after four days and took a quick detour to Safeway to buy some more. On the way to the canning aisle, I bumped into a display with blueberries for cut-rate prices. Pedro LOVES blueberry jam. Maybe he’d eat some and put on a little weight.  His wedding band fell off when he stood up that morning. There was NO WAY I could pass up on this bargain. Fortunately, it only took one afternoon to make the blueberries into jam. I had the time—not all of the apricots were ripe yet.

I considered scavenging other stores, looking for other bargains, but decided that maybe I didn’t have time. After all, I had cancer to fight, decisions to make, treatments to explore, insurance papers to fill out and children to look after—whose house were they at tonight?

I needed to remember to ask Sarah’s hosts if she displayed signs of unreasonable anger—and I needed to look up causes and cures of that mental phenomena the psychiatrists called ‘projecting’. After all, I’d never met anyone who fought feelings by doing something unreasonable before.

Don’t miss Part I, Part II and Part III of our series!