being a parent

6 Things I Learned My First Year as a Cancer Mommy

Cub at age 5, October 16, 2014 -- 4 days before his diagnosis.

Cub at age 5, October 16, 2014 — 4 days before his diagnosis.

Over the past year, I haven’t allowed myself to look back very often. When Cub was diagnosed with Acute Lymphoblastic Leukemia, I made a commitment to moving us forward, with our eyes on the prize of completing treatments and Cub once again being a healthy, happy little boy.

Today is the one year anniversary of his diagnosis, and in order to properly acknowledge the progress we’ve made, I’ve had to force myself to look back over what was inarguably the worst year of our lives.

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Cub doing some schoolwork while inpatient for a fever.

We experienced the emotional devastation of his initial diagnosis; being whisked away to Memphis for 6 1/2 weeks of Induction chemotherapy; a high fever that wouldn’t go away; being in isolation for 5 of those weeks; my baby losing his hair; watching him have numerous surgical procedures and enduring the pain of endless pokes and port accesses; my training to administer antibiotics through his port when we were alone in housing; the grocery bags of medication and supplies that I organized in the drawers of our housing dresser; having security deliver all our meals once we were placed in housing after 10 days in-patient because we were in isolation; Cub not getting to see or play with any other children; the exhaustion and loneliness;  and the weakness and incessant nausea caused by the medicines that were saving his life. The wonderful staff at St. Jude promised me it would get better, and it did. On December 8th — one day after my birthday — we found out he was in remission. It was time for him to move forward into the Consolidation chemo phase, and for us to go home.

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Cub and his bag of fluids, “Mr. Peabody.”

The Consolidation phase was tough — lots of nausea, new meds, and frequent 5-hour trips to Memphis where we would check into the Medicine Room of an evening to have Cub’s port accessed, labs drawn, and get a large bag of fluids attached. We decided to name our bag, as it would come with a portable monitor and shoulder strap. It would go back to the housing room with us, and it was quite heavy. Cub couldn’t lift it himself, so I carried it for him, and we went everywhere in tandem. We named his bags — alternating between Sherman and Mr. Peabody. He had to have the fluid in order to help his body properly flush the chemo treatments, and he would have to take a “rescue” drug afterwards in order to protect his organs from failing. He would always get nauseated on the windy Arkansas roads we took to get back home, but he never complained.

A few months — and several floor mats — later, we completed Consolidation, and Cub graduated to the final phase of chemo: Maintenance. I foolishly thought that this would be 120 weeks worth of a downhill slide. We would be going to Memphis less frequently, and get 3 out of 4 of Cub’s weekly chemo infusions at our local affiliate. Several weeks into Maintenance, Cub was scheduled for what’s called Reinduction — where his body is revisited by the early chemos of Induction. He was to have two reinductions. But, Cub had a rare side effect from a med called L-Asparaginase (we call it “asparagus”), and it caused him to have a stroke. Did you know 6-year olds could have a stroke?

That was the most terrifying experience of my life. The L-asparaginase can make the blood have more of a tendency to clot, or it can make the blood have more of a tendency to not clot. In Cub’s little body, it increased the tendency for BOTH. Cub developed an inoperable clot in his brain AND bleeding from blood vessels in his brain, but through God’s grace and the wisdom and experience of some very talented medical teams, he survived with no cognitive damage and minimal physical issues from which they expect him to fully recover. And, because he is considered low risk, his primary St. Jude physician was able to cancel the second reinduction, so Cub never has to take L-Asparaginase again.

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Cub enjoying an ice cream at St. Jude’s after an inpatient procedure.

Today, one year after diagnosis, we are 40 weeks into the last phase of chemo, with 80 weeks left. Cub has on average 2 physical therapy treatments per week, 2 occupational therapy treatments per week, one clinic appointment per week where he has labs drawn and receives a chemo infusion. He takes anywhere from 15-30 doses of medicine per day, depending on his treatment plan for the week, including 2 blood thinner injections that he will be taking until the brain clot is gone. We go to St. Jude once a  month for a spinal procedure wherein he is put to sleep and chemo is injected into his spinal fluid so it can wash his brain to prevent leukemia cells from developing there. In a few months, these trips will go down to once every 16 weeks or so.

This last year hasn’t been horrible, or lost time. It’s just been hard, and this Cancer Mommy has learned a lot about life, love, and motherhood. One day, this will all be behind us — everything but the lessons we’ve learned along the way.

Here are just a few of the many sweet lessons that swirl in my heart everyday. I picked six because Cub is six 🙂

  • I have survived the realization of some of my very worst fears, and come out stronger, braver, and yes — even happier. There is joy to be found in every circumstance — seek it out, embrace it, and let it empower you.
  • Every day, I sit in awe of my little boy — he has endured more in the past year than most of us will in a lifetime, yet he remains compassionate, creative, humorous, loving and joyful. Circumstances don’t define you – you define them.
  • Not everyone is able to walk this journey with us — it might be too much emotionally, or they have other things going on, etc. But, we have been embraced by SO MANY people who love us, walk beside us, send us encouragement and lift us up in prayer. Our darkest days inspire others to shine and share their light.
  • Life radically changed for us one year ago today, and at some point early on, I had to accept that. My work, my plans, my time and expectations are all now dictated by a medical protocol and all the unexpected things that accompany it. Be honest with yourself about what you can and cannot do – recognize your limitations, but don’t sell yourself short. Accept your reality and do your best with what you have every day.
  • We are traveling a long road to healing. Sometimes it’s exhausting. The Cancer Mommy can’t afford to get sick and run down. I’ve learned that even five or ten minutes of self care make a real difference in my personal well-being. Take a walk, get your favorite drink and sit on the porch, read a few pages of a book or magazine, or go lay on your bed with the timer set for 5 minutes. You have to take care of yourself in order to take care of those you love.
  • When our child is facing a life-threatening illness, our instinct is to dig in and sit vigil over them — to prepare for battle with all the focus and force of a mother protecting her young. And this is a good thing. But, we have to remember that he or she is a child, and this war is set against the backdrop of their childhood. Don’t let cancer take your son or daughter’s childhood — make an effort to let them experience the magic and wonder inherent to their little beings.
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The Beginning

Cub black and white schooljpgMost of us start our day with the idea that it’ll be routine. Most of us don’t expect a cataclysmic, life-altering, devastating event, unless maybe it’s Monday.

October 20, 2014 was a Monday.

I started the day as I do most Mondays – in a rush for work. I kissed my son goodbye (it was his last day of fall break), scrambled to find my keys, and forgot my lunch. Like I said, routine.

Later that morning, I called the pediatrician’s office to schedule a follow up. Cub, my 5 (almost 6) year old son, had just finished a course of antibiotics for pneumonia, and the doctor had thought he heard a heart murmur. Hence, the follow up.

Receptionist: “Oh, it looks like we have an opening at 1:45. Will that work for you?”

Me: “That’s perfect!”

Off work early on a Monday, spending the afternoon with my little boy – a nice break from the mundane.

We didn’t have to wait long to see the doctor – just long enough for Cub to enjoy the fish tank. The doctor said Cub’s lungs sounded clear, and there was no hint of a heart murmur. It must have been caused by the pneumonia and had faded away.

The doctor and I shared a bit of small talk as he typed in the computer.

Me: “So, last Friday at parent/teacher conference, Cub’s teacher mentioned that she and some of the ladies at the school thought that Cub was looking a little more pale than usual. What do you think of that?”

Doctor: “Hmmm…well, let’s see.”

He proceeded to examine Cub’s eyes, palpate his neck and stomach, and look at the palms of his hands.

Doctor: “You know, he does look a bit pale, but the whites of his eyes don’t look yellow, so I don’t think he’s jaundiced. Let’s just do a blood test and check it out.”

We walked down to the lab where they did a finger stick, and we were told to go on home. They’d have the results later that afternoon and would give me a call.

Fifteen minutes later, Cub and I were in the Sonic drive-through. I was buying him a slush – green apple – for being good at the appointment, when the doctor’s office called.

Receptionist: “Mrs. Robertson? Are you still in town? We’d like you to come back to the office. There was something in Cub’s lab work, and the doctor wants to do more tests.”

It wasn’t what she said that made my heart beat faster. It was how she said it – something in her tone. A depth of compassion that felt out of place.

I told her we’d turn around and be back in fifteen minutes. I called my husband and told him to meet us there. I willed the ice that was snaking through my veins to back off and focused on my breathing while stealing glimpses of my son in the rearview mirror. He slurped his green slush and played with his straw – oblivious to the fear building in my heart. I tried to soak him in – to surround his little self with all of my mother’s love, to protect him from something for which I didn’t yet have a name.

Thirty minutes later, Cub was being admitted to the hospital for further testing. His pediatrician had told me that Cub’s counts were exceptionally low – so low, in fact, that if an adult had those numbers, he wouldn’t be able to get out of bed. The doctor was kind, politely hedging around the elephant in the room. But, because of my mom’s recent battle with leukemia, all the terms rang familiar. Too, too familiar.

I stepped up close to the doctor, and asked, “Do you think it’s leukemia?” He said, “With his counts, that would be a very real concern.”

The next few hours felt like a dream sequence. A part of me holding onto the vague possibility of a virus, but nothing could push away the very real probability of a cancer diagnosis.

I was able to make a few phone calls. I helped the nurses hold down my son while they put an IV in his ankle. I tried to explain why we couldn’t go home just yet. I smiled and ordered him macaroni and cheese from the cafeteria.

Around 10pm that night, the hematologist took me and my husband to an empty room where she had set up three chairs. A very gracious woman, she explained some of the tests they had done, and a little bit about the functions of various blood cells. Then she told us she believed Cub has Leukemia.

I heard her words, delivered with compassion and professionalism, though I tried desperately to reason against what my heart already knew to be true.

Childhood Leukemia. Probably ALL (Acute Lymphoblastic Leukemia). Over a 90% survival rate. It’s the most common childhood cancer, and he has good odds.

Good odds. Good odds? I hate that term. It makes me feel like I’m betting on a horse.

I wish I could say that I was that person who knew from the very beginning that everything would be alright. That I knew God would heal him. That we had nothing to fear. But, no. I wasn’t, and I’m not.

No. In those first few heaving moments, my raw, primal terror was louder than my faith. I have lived enough to know that we don’t always win. Win. How could I guarantee that 90% win? My mother’s heart went into an adrenalin-fueled panic. Cub has to be in that 90%.

My husband and I sobbed while the doctor sat and held our hands. We sobbed while she prayed over us and our son. We sobbed while she waited for us to catch our breath.

Then, we talked. “We will have to transfer him tomorrow. You have three options for where to start treatment. Barnes, Kansas City, or St. Jude. We are a St. Jude affiliate, so if you go there, you can do some of your treatment here. But, the choice is yours. I’m not trying to sway you one way or another.”

I looked at her, putting my hand on her knee. “If this was your son, where would he be tomorrow?”

She smiled. “There’s no doubt – St. Jude.”

I sat up, shared a knowing look with my husband and nodded my head. “Then Cub is going to St. Jude’s.”

I waited until Cub fell asleep to run home and pack a bag. It was midnight, and I had no idea how to pack.

My oldest brother drove an hour and a half in the wee hours of the morning to spend the last few hours with us before the ambulance took us to Memphis. When I called him to tell him, the words barely came. Leukemia. Saying the word in relation to my son was like rolling rocks around in my mouth. Awkward. Foreign. Painful.

After a nearly 5 hour, non-stop ambulance ride, we arrived in Memphis around noon. I never saw the outside of the hospital as I was riding in back with Cub, but once I stepped from the ambulance into the breezeway, I was swarmed with kindness.

We were quickly moved from a holding room to Cub’s room on the pediatric leukemia ward. That first day was a blur of doctors, nurses, social workers, a chaplain, child-life specialists, a dietician, and many, many tests. Who knew a little five year old boy could be so brave?

At some point later that evening, one of the nurses lovingly kicked me out. “Go get some coffee,” she said.

I wandered around a bit, unusually disoriented from having no points of reference. I foraged something to drink and some peanut butter crackers that I ended up not eating. I went into the little parent’s room adjacent to Cub’s room, where my little bag was sitting on a pull out bed that I ended up never using. I realized that I hadn’t brushed my hair since sometime yesterday afternoon, and I had probably better set myself to rights. I grabbed my makeup bag and headed into the bathroom.

There was no mirror. None.

At first I was confused. Was it hidden somewhere? On the back of the door, perhaps? Nope.

Then, I was a little agitated.

Then, I was grateful.

I didn’t see what I expected to see. I couldn’t see the bedraggled, exhausted mother spent from her own desperation. I couldn’t see the traces of mascara that my tears had left behind or the little-girl-lost expression in my brown eyes rimmed with red.

Instead, I could see what I wanted to see. I could see what I wanted Cub to see. And, I realized while standing there in front of a blank wall, that this situation does not have to define us. Cub and I don’t have to fall into any preconceived ideas of what a mother and son “doing cancer” are supposed to be like. I didn’t have to be the mom I expected to see. I could be the mom I wanted to be.

So, I blindly combed my hair and tucked it into a clip. I washed my face, put some Burt’s Bees on my lips, and threw on a smile for Cub. I decided I get to be the mommy I want to be, and the mommy Cub deserves, not the mommy cancer says I have to be.

We’re doing this together, and Cub gets his mommy every. step. of. the. way. Not some washed out, hollowed reflection of her. He needs all of her, and that’s what he’s going to get.

I couldn’t help but wonder if someone knew what we mothers would think on our first night, standing in front of a mirror. And, maybe that’s why there wasn’t one on that bathroom wall.

Breaking the procrastination cycle one day, or moment, at time.

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There was a time when, if you looked up procrastination in the dictionary, you’d find my picture right next to its phonetic spelling. Even now, I succeed in accomplishing my goals in spurts, like a sprinter. But, I want to be more like a marathoner because, after all, this is a long race we’re running.

In my younger years, I would often wait until the midnight hour, literally and figuratively, to do things like laundry or that 40 page term paper on the redemption cycle as represented by earth elements in King Lear. True story.

Then, as it so often does, life caught up with me and my mercurial ways. Certain things just didn’t flex into my creative scheduling. Bills, work, grown up chores, and the eventual realization that, whatever I wanted to accomplish in life, I was responsible for putting into play. I have an expiration date, and contrary to what most of us so-called visionaries were taught to believe by other so-called visionaries, so do our dreams and aspirations.

After a few (okay, MANY) unladylike stumbles and outright epic failures, I realized that my goals were more important than my perceived freedom of spirit. I began to prioritize, whittle down, and focus. None of these actions come easily to me. I can’t even call them habits yet because, even as a 40-something, I still struggle. Daily.

I make to-do lists, lose them, and start over with a new piece of paper (sorry, trees). Between my full-time job, being a mom and (trying) to be a homemaker, sometimes it’s hard to squeeze in freelance work before 9pm. Then, there are my working manuscripts: my memoir, my novel, and my fantasy trilogy. Oh, and those short stories. . . *sigh*

It’s unrealistic to think I can do it all, and yet, I feel like a failure for not being able to bring home the bacon, fry it up in a pan, etc. etc. (If you’re under 40, you probably won’t get that reference. Sorry.) After beating myself up for not living up to my own expectations (or delirium, maybe?), I usually come back to reality with a clearer vision. I count my blessings and remember to be thankful. I remember that, yes, tomorrow IS another day and sometimes I remember that the rest of the day – the afternoon or even this next hour is fresh and unspoilt.

Then, instead of making the day’s to-do list on paper, I email it to myself. Instead of attempting to write 3 chapters between the hours of 9 and 11pm, I tell myself to do one page. One page is good. One page is great. One page is freaking FANTASTIC!

Can I bake 3 dozen cupcakes for the school bake sale this Thursday? No, but I can take home some reading pull out pages and collate them over the weekend. Can I clean out the car, weed the garden, and make a batch of cookies between getting off work and taking my son to his piano lesson? No, but I can grab a few things as I get out of the car, water the mums, and look through the cookbooks quickly with him to pick a recipe to bake together on Saturday afternoon.

Can I say no? Yes.

Can I compromise? Yes.

Can I be patient and forgiving, with myself? Yes.

And so can you.

There are many reasons we procrastinate. Only you can look inside yourself for your unique answer. For me, my reasons vary. I’m tired. I’m afraid it won’t turn out the way I want. I think I’ll have more time later. But, I challenge each of us to look at our lives and realize we’re on a one-way trip. What do we really want to accomplish while we’re here? What will bring us joy? What on our list is worth making a priority? What can we let go?

When you decide what’s important to you, revisit it daily. Spend time with your goals if you want to make them realities. You might stumble and fall, but keep getting back up. Move forward a little or a lot everyday, and you’ll make it.

 

 

The Language of Motherhood

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My husband and son, at the beginning…

My earliest memory of my mother is of her hands. Strong, soft and sure, one holding me fast by the arm while the other sudsed me up with a soft cotton washcloth. I was sitting in the kitchen sink. It was stainless steel, cramped, and cold against my back, even though it was summer. But she had me, and wasn’t going to let me go.

Now, looking back over the last 40 years, I can see my mother’s hands over and over again. Brushing my hair, scrubbing the floor, rolling out dough, pulling weeds, holding her Bible, ironing with steam, sewing a button on, making sandwiches, tucking me in, wiping away my tears, pointing the way, holding my hands and waving goodbye…

Sometimes, often in fact, during my own journey through motherhood, I wish I was more like her. She was a doer, always busy, always with a goal in front of her – she didn’t rest until her work was done. Our house was spotless. Her hands were always busy and full.

Sometimes, when I was young, I would get frustrated. Why can’t we just relax and have fun once in a while? I would ask. Because there’s work to be done, she would say. Won’t it feel good when we’re all done?

Now, I wake up in the morning, feed the cats, feed the dog, feed my son, get my son ready for school, and get myself ready for work. I get dressed and while I’m curling my hair, I see that the bathroom could use a sweeping. I should plan on going to the laundromat tonight after work, but my son has a music concert, so it will have to wait. Backpack? Check. Lunches? Check. I pull out of the driveway…did I make the bed? Uhm…maybe not. Geez, the flower bed needs weeding…I sure wish I was more like mom.

I look at my son in the rear view mirror, and we share a smile, my hands gripping the steering wheel in a tight turn into our busy, busy day. We laugh and talk. At the stoplight, I reach back and we hold hands for a brief moment, our secret signal to one another that everything will be alright. Then, we move on.

We get home at the end of our day, and I fix supper, we eat and do a few chores, and then there’s this precious window of opportunity – about 45 minutes before my little boy has to go to bed. The bathroom floor still needs swept, but I don’t do it. Instead, I sit on the couch with my son, and we read. Or tell stories. Or play Legos. Or watch Green Lantern. Or have a tickle fight. Or just snuggle.

The time goes by, and we say our prayers…a tuck here and a tuck there, and he’s off to sleep.

It’s 8 o’clock. I go into the bathroom. I forgot the broom. Why can’t I be more like mom?

I indulge in a pity party. Mom was a better mother than I’ll ever be. She worked so hard and loved so much.

Then, I hear her whisper in my ear. You love just as much. You work just as much. You are everything just as much, just different. You are just what you are supposed to be.

I came to realize that my mother’s love language was acts of service. Every jar of pickled beets, and every starched blouse; every hot meal, and every clean floor said I love you.

My love languages are words of affirmation and physical touch. So, every conversation about my son’s day at school, his favorite Skylander or Pokemon, and every snuggle on the couch says I love you.

So, mom and I are different, but the same.

Our love is different, but the same.

Our mothering is different, but the same.

It’s easy to compare ourselves with others, especially those we hold in high regard. It’s also easy to use that comparison as a way to tear ourselves down instead of building ourselves up without seeing the good that we do. We come to equate different with wrong.

Try to see yourself with loving, truthful eyes. That’s the way those who love you see you, and it’s the way your children see you, whether your bathroom floor needs swept or not 😉