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Home » Essays on Living with Cancer » My Illness — from My Daughter’s Eyes

My Illness — from My Daughter’s Eyes

Posted by on October 27, 2012 in Essays on Living with Cancer, My Health Updates - 49 Comments
autumn leaf

 

How do you tell your child that you are dying? This is a tortuous question for any parent, but it is especially anguishing for those whose children are too young to grasp the finality of death. Children, I say. Well. Should I pretend I have a clear grasp on the finality of death? I hear talk of light too bright for the eye to behold. Of heaven, of hell. Of a darkness unknowable. There are things the mind simply cannot fathom.

What, then, can I expect my eight-year-old daughter to fathom, let alone my four-year-old? What can I tell them – what will I tell them – when that horrible moment forces itself upon me like some implacable beast from a dream?

 

I found myself back at our hospital, Johns Hopkins in Baltimore, on a semi-emergency Wednesday. Over the course of the past month or two my breathing has deteriorated to a point where walking up a flight of stairs results in several minutes of unquenchable coughing and rapidly restricting airways. It can be easy to lose yourself in an airless panic. As a kid with asthma, I experienced similar attacks from my bronchial infrastructure, the way the bronchial tubes, the branches of bronchioles, would swell up and block the exchange of oxygen. Your natural response is to breathe harder, as if you’d simply run some sprints and needed extra gulps of air. Gasping for more air made the swelling worse, however, a cruel trick of nature. Nor did it do a thing to facilitate the exchange of gases, of oxygen and carbon dioxide, the process we know as breathing. My father taught me to do the opposite of what seemed natural for a young boy. We’d sit on the bed or couch – I’d lay, he’d sit – and concentrate. He’d talk softly and I’d concentrate on the sound of his voice rather than the words he said. And slowly I’d lose the urge to breathe harder and faster and instead would veer to a conscious physical mellowing, a waking sleep with the breathing coming in steady, slow rhythms. Then, eventually, real sleep would descend.

At 44 I have built upon the lessons of my father with lessons from my daughter, an expert in all things zoological. She has taught me a great deal about sharks, for example. When she was about 4 years old she informed me that if I were to be attacked by a shark in a pool there would be no use in trying to talk my way out of it. Sharks don’t speak English. She has since taught me about lizards, snakes, turtles and crocodiles – all things reptilian. From her lessons, I’ve learned to turtle when I face the natural urge to gasp deeper for air. Turtles are very Zen creatures. Faced with a threat, they retreat into their shells, block out everything and seek strength and calm within themselves. You can kick them around, your dog can scratch and bark at them, your children can roll them down the slope into the creek. None of it matters to the turtle. You can’t break him. He remains cool and collected in his scratchy dome of shell. I try to copy him – sans the helpful shell. I sit back on my bed and relax my body to the extent that I can. I block out everything else, pulling an invisible dome about me. I hear nothing. Not the noise of that vacuum downstairs. Not the hum of the television. Most of all, not the cacophony of my thoughts. I shut these down with the discipline of a field commander. I focus on one thing: Relaxing my body – my stomach, my arms, my shoulders, my chest. I physically take control of my breathing, pulling back from the panicky-quick gasps for air and slowly, if shallowly, inhaling and exhaling. Soon enough, my normal pattern of breathing returns, and the incident passes. Only, the incidences were occurring more and more. My invisible dome was developing cracks.

My wife, Dena, had been wanting to schedule an appointment with my oncologist, Dr. Hammers, for some time now. Whether it was my restricted breathing or my turtle imitation that freaked her out most, I can’t say. We talked of moving up the date scheduled for my CT scan from Nov 8 to … sometime sooner. (That’s the best you can hope for with hospital administers and bureaucrats: sometime.) We didn’t have a clear plan as to what we would do if the scans were negative. I didn’t feel that my breathing had reached a point of requiring emergency care. And I wasn’t ready to give up on Afinitor, though in my heart I knew it wasn’t working, and turn to yet another drug that also probably wouldn’t work either.

Instead, I put Kate to bed and lay down with her to read her nightly bedtime story. Being Halloween season, I was reading Spooky Buddies, a tale about a remarkably politically correct and culturally diverse group of sibling puppies that take on an evil, if somewhat daft, wizard and his big-jowled Halloween Hound who want to take over the world and, well, do whatever wizards and hounds to do to the world once they have succeeded in their dastardly plans. As I read, however, I found myself unable to complete the sentences on the page. The harder I tried, the worse it came out. I began to sound like a bad actor that has just been gut-shot and needs to whisper in the ear of his companion – because, in the movies, you always have those last sentences left in you no matter how badly you’ve been shot. Fred, I just. Just want to say. I need. You to. Need you to look after my. Pet lizard. He keeps losing. His tail. The end result was that my reading was scarier than the Halloween story. Kate finally stopped me and told me I could rest for a minute. We laid there for a few moments while I caught my breath, no dome of protection. Only Kate’s hand in mine.

I went into my bedroom and asked Dena to please finish the chapter for Kate. And then I said, yes, I guess it’s time to talk to the doctor about moving up the CT scan. Maybe just after Halloween.

The next day I got a call from Dena at her office. Dr. Hammers wanted to see us immediately. After hearing the symptoms, he feared pneumonitis. Pneumonitis is an inflammation of the lungs that can severely restrict the airways and is among the top 15 causes of death in the country. It is also a potential side effect of Afinitor, and Dr. Hammer’s had had bypassed the bureaucracy and  moved our entire regimen up to the next day: bloodwork, labs and CT scan. The rapidity with which he moved was unnerving, but in a way I hoped that I did have pneumonitis. It would mean that there was probably a drug regimen that would relieve the condition. The only alternative was that the disease was closing in, and for some days now I had begun to fear that was exactly what we were facing.

With CT scan in hand, Dr. Hammers walked into the examining room and informed me that I had a solid case of pneumonitis. I was to quit the Afinitor immediately. He wrote a prescription for antibiotics in case it had become infectious, as well as a prescription for steroids to make me agitated and piss off everyone in my family. (Well, he said it was to ease the inflammation in the lungs.) And, finally, he ordered oxygen. This, he said, would help with the breathing and ensure that oxygen was actually making its way to my brain. There was some evidence that my brain had been deprived, as I spent much of the day at the hospital working in obscure cultural references from the 1980s. Can we ever find the exit lane to Electric Avenue or forget Jenny’s number from the bathroom stall? (It’s 867-5309 for the Tweeters out there.) If you can answer yes, then your heart is colder than mine. At times, Dena confused my cultural hilarity with the possibility that I was about to faint. She kept asking me if I wanted to sit down. She’d look in my eyes to see if they were focusing. Bueller? Bueller? Bueller?

 

When Dena opened the door to take Kate to school, my mother asked her what time the oxygen company would deliver the tanks. Dena made one of those faces meant to say, Let’s talk about this when I get back, not in front of Kate but in reality said nothing at all, other than possibly My god, I’ve got a piece of pencil led stuck in my eye. There was a cool October chill in the air that came in through the door, and I watched them cross the street and head off toward the school. As they turned the corner at the end of the street, Kate stopped and asked Dena why people were delivering oxygen to the house. The question was not posed: What is oxygen and why do we need it. It was posed: I know Daddy’s sick. I know what oxygen means. Why are they bringing oxygen to the house? Kate had watched her great-grandmother die with oxygen tubing wrapped through her nose. She couldn’t have been more than five years old at the time but she was very fond of Dena’s grandmother, who was the archetype of the white-haired kindly old woman full of hugs and warm words, always working on a batch of oven-hot cookies. Whenever Kate has confronted death in her life – be it a sad death in a movie or the death of a pet – she has invariably fallen back to losing her great-grandmother. The result has always been an inconsolable grief that only time could cure. Wherever there is heartbreak in Kate’s world, there is her great-grandmother leaving for another world.

Dena looked down to Kate with no little anxiety and told her that the oxygen was to make me feel better. It would help with the coughing, she said, as that was something to which Kate could relate. Lately, after one of my coughing fits, she has taken to saying, “Cough you” – a kind of bless you for the coughing crowd.

“I don’t like it in the house,” Kate said.

“Don’t you want Daddy to feel better?”

“I do. Of course I do.” She stood silent for a moment and then looked up at Dena. “I just don’t want it to mean anything.”

Dena found herself unable respond.  She knew what her daughter was telling her. Kate wasn’t asking any questions. She wasn’t asking whether the oxygen meant anything. In her heart she knew it meant something. In her heart, she held on to the memory of her grandmother. It wasn’t a question at all but a declaration.

Dena looked at Kate for a moment longer. “You can ask me anything you want,” she said, terrified of the question she knew was coming. She had so few answers. She and I had spent hours and hours discussing how to communicate with our children about what lay ahead and yet we were not closer to answers than Job.

But the question didn’t come. Not exactly in the form we have most feared. Not yet.

“Why is this happening to my daddy?” she asked.

“I cried,” Dena told me when she got home. “I just opened up and cried, right there in front of her.”

Other mothers and fathers were walking their kids to school, speaking of Halloween projects or tests that were approaching. Fallen leaves swirled everywhere on the sidewalk. The sky was gray and the light was low and the air was chill and everything that made Dena despise Fall because it only led to long dark days of Winter seemed to come bearing down on her.

And then the moment passed. Kate had no more questions. She didn’t want to talk about it anymore and walked on quietly for a while. The thinness in the air seemed to lift and, in the resilience of children, she began to discuss her Halloween project. She was going to need some glue and some more colorful paper. Her project was going to be spooky; it had to be spooky, she noted with the air of a movie director. That, after all, is what Halloween is about.

The air lightened just a bit, at least for a little while.

 

  • Karen in Ottawa Canada

    Heartbreakingly difficult for you & Dena to face this with your young children Chris – I hope the antibiotics & oxygen ease your breathing and allow you to read those bedtime stories and answer all the questions Kate & Josie will have, and allow you to surround them with love and special cuddly chats – I’m all for telling kids the truth and communicating fully with them – my dad was diagnosed with brain cancer when I was 11 back in 1968 and after diagnosis the word was not allowed to be spoken in our house or in his hospital room – it was a very quiet sad 18 months until we lost him and only in his last few days was I told, at age 12, to tell him I loved him everyday – before that, I was to act like nothing was happening. And Dad lost his ability to speak a few months before his death, so I never got those special moments with him. It was like not talking about it would make it not happen. It left me so bereft after his death – all those months of pretending by everyone around me, left each of us in our own little isolated grief, unable to share it, as we’d been told to keep it all to ourselves for so long. Very unhealthy way to deal with tragedy in a family – it has left lifelong consequences that I still battle to resolve within on a daily basis. Denial helps no one. My heart goes out to you and Dena and the girls and all of your family – fully embrace your time together and really make it count. Big hugs to you all.

    • http://www.facebook.com/john.russell.1840 John Russell

      Chris-know you and your journey has touched so many lives. I cried while reading this. I wish there were words to make things better.

  • Laura

    My heart goes out to you guys. I sure hope the oxygen is helping you breathe better.

  • kimberly gaughan

    HI CHRIS AND DENA, IM KIMBERLY, IVE BEEN READING YOUR BLOG FOR A WHILE. I SENT YOU A MESSAGE A WHILE AGO ABOUT MY HUSBAND PASSING FROM THE SAME CANCER. I AM SAD TO READ YOUR BLOG TODAY. FOR I CANT IMAGINE WHAT YOUR GOING THRU WITH YOUR CHILDREN, MY CHILDREN WERE ADULTS WHEN THEIR DAD PASSED. IN FACT, THEY WERE MY ROCK DURING THE TIME HE WAS DIEING. IM GLAD YOU GOT THE DIAGNOSIS FOR YOUR BREATHING AND WILL BE ABLE TO GET BETTER. YOU ARE SUCH A FIGHTER, AND I HOPE YOU CAN FIND A WAY TO TALK TO YOUR CHILDREN. I AM PRAYING FOR YOUR FAMILY, AND WILL BE READING EVERY BLOG. GOD BLESS YOU, KIM

  • Kim Larkin

    I love you all.

  • http://www.facebook.com/jackie.barnes.1610 Jackie Barnes

    Normally I read your writings with tears of laughter at how you brave it out, but today my tears are for real for the difficult position in relation to telling your brave little girls, who are far too bright for their ages, what is happening to Daddy. My two sons are grown men, but to me they are still very vulnerable and telling them I had stage 4 kidney cancer was the hardest thing I have ever endured! I think if you can get away with it I would tell them just the briefest facts you can to stop them getting scared of what they see happening around them, answer their questions as best you can, a childs imagination will run wild if left unanswered and they understand far more than we ever give them credit for. Plus I would be writing letters to them daily, telling them how all of this has been so tough and just how much you love them for them to read when they reach an age of real understanding, a memory box each filled with precious things that they will treasure for ever from their Daddy! xx

  • http://www.facebook.com/heidi.brautigan Heidi Humphrey Brautigan

    Hi Chris and Dena, I taught school with Dena’s mom in Germany (and met Dena at a Thanksgiving party one year–2004 ish I believe). I hadn’t been keeping up with Chris’ well being, and was so saddened to see that this battle is getting more and more difficult. I will continue praying for you and your family. You both are strong and empowering, although I’m sure you feel weak and humble at times. Give those girls hugs, and all the answers they need. The worst part is not knowing the outcome. Hugs to you both!

    Heidi Brautigan

  • Julie

    Beautifully written. I’m so, so sorry. Be present with each other and avail yourselves of all resources – all the help that people offer and want to give – take it. Praying for you and your family.

  • Maryalice Haest

    Your words are so poignant, and beautifully written. This makes me so sad. Poor sweet Kate, my heart brakes for all of you. I hate that this is happening. I hate cancer. The entire Battle family is in my thoughts and prayers. Sending you all much love, and big hugs. Maryalice

  • Phil D

    Chris, I have tears streaming down my face. My children are 22 and 20 and fully know and understand my situation. I dont have to explain this to a child. However, I was 9 years old when my parents were killed in a plane crash. I still cry for them and miss them but my parents did not know it was coming and there were no quiet talks about what was happening or life without them. I also was moved from my home and life as I knew it following their death. Based on your writings, Dena will give them the love and warmth needed by children. I think you are approaching this beautifully and have to give them the information they can understand and process. But more importantly, leave them memories. I am writing and video taping messages and stories for my sons. I dont know if it will help them but there is so much I wish I could ask my parents and know about them. But, I know without a doubt that I was loved and nothing will ever change that. And I am certain your children will always feel your love as well. God bless you, Phil

  • Mick and Sue

    Chris and Dena, love, pride, tears, faith, and hope! We never give up hope!

  • Maz

    Every time my husband goes for a scan, we wonder when he will develop his gross uterus. Your blog has made us smile at times when it was rough for us and I thank you for that.
    I am sorry to see your post today. I know my son was 11 when he asked me if his Dad was going to die. Its the most heartbreaking words a child can say, so I know how Dena feels and my heart goes out to you both. Honesty is the only policy and gentle stages of explanation, We found they shut off and went to find something else to do when they heard enough that day. The boys both came back and asked things when they had thought about it. Saying I dont know, was important when we didnt know an answer even though there was a hope it would be fine.
    I wish you strength to cope with the questions xx

    Maz

  • goldenjava

    Big big hugs for all of you!!

    Dori

  • Tracy Hiatt Grice

    Damn it, Chris. Love to you and your strong, lovely girls.

  • http://www.facebook.com/barbara.j.woods.3 Barbara J. Woods

    Thinking about you and keeping all of you in our prayers.
    Love, Aunt barb

  • Monica Gonzales Conic

    We are here for you. There is no right or wrong way to tell Katie or Josie just as long as you have peace with your words and the girls. The only thing I can say about oxygen is be sure the tubing doesn’t get caught, it happened to my dad and well after we changed the oxygen tank we figured out the tube was caught under a chair preventing the air to flow. Hugs and kisses to you, Dena, Katie and Josie.
    Love, Monica, Chuck and Elena

  • Scott Russell

    Can’t express the emotion all of your posts bring and how I long for the days when all we had to worry about was how to keep the pipes on your truck quiet while trying to get somewhere we probably shouldn’t be going! Stay strong and rest in the fact that you have an army out here thinking and praying for you and your family every day.

  • Kelly Chard

    We will never give up hope! We love you!!!! xoxo

  • Mike McFadden

    Crying while I read this and so sorry to hear the latest.
    MikeMcF

  • Karen Chase

    Chris,

    As always, everything you write moves me. With young children of my own (6,4, and 3) this just rattled me to the core. I worked for hospice for 10 years so it also reminded me of the beautiful intuition of children as well as their resilience. You and your lovely family have and will remain in my prayers!
    Karen Chase

  • Meredith

    Kate is not the only one asking that question. All of you remain in our prayers.

  • http://www.facebook.com/gordon.grice.9 Gordon Grice

    Chris, I wish you hadn’t had to write this, but it’s a great piece of writing.

  • Steve Abernethy

    Love for each other and your family has never been so clearly stated. A lesson in the important things for us all. Your sharing is a gift Chris… our hearts are with all of you.

  • Libby

    Chris – you are such a brave and strong person. You and your family are in my prayers.

  • steve

    Chris:
    I’m just a regular guy, but I have a “feel” for what u are going thru, haveing just lost my brother. My brother was a Viet Nam vet. He died twice. Each time, he said it was the most peaceful, wonderful thing he had ever experienced. I’m not saying goodby to you, but i want u to know, my brother was a VERY honest person. So, if it comes to that, the worst part is leaving your family. But dying, so i have been told, it almost a reward for living. Don’t be scared, which is easy to say. I will be very scared. But I do believe my brother.
    Steve

  • Cheryl Raduenz

    You are in our prayers. God has given you an awesome ability to reach many with your essays. Continue on!!!

  • mary pattison

    YOU ARE AMAZING. Not many people could share their very soul like you are able to do. Prayers continue.

  • Teresa Shehada

    YOU ARE AMAZING AND BRAVE AND AN INSPIRATION TO ALL. GOD BLESS YOU AND YOUR FAMILY. PEACE AND LOVE TO YOU.

  • Kerri C.

    You and Dena are great examples of faith and grace. I’m praying for miracles!

  • Melanie Barnes

    You and Dena are amazing! I continue to pray for you ever single day.

  • Matt Ivy

    Chris/Dena, this all just makes me sicker than a dog and madder than hell! Why aren’t ANY of these drugs helping? Why, WHY, WHY!!??? I say.

    Yet I read your posts and the saga that is so similar to ours (all except missing positive results) that it almost rhymes and am left feeling so helpless. So helpless and unable to tell you what I’ve learned in this fight or make any more predictions because as we know – even a broken clock can be right 2 times a day.

    I’ve been WRONG every single time I’ve said “I know this drug will work” or “surely this novel idea will work. Wronger than that broken clock!

    Mad because I know how much Dena has sunk herself into areas of research and unexhaustably worked to find the RIGHT answer as well as shared and helped SO MANY along her way. The good Karma she has built should be enough to sustain your entire extended family for decades! I know this because I’ve watched it AND I KNOW!

    Get those lungs clear and don’t give up! Take the next available line of targeted therapy that makes the most sense as far as potential side-effects and keep your spirits! YOU ARE SO SO SPECIAL AND TOO INSPIRATIONAL to quit.

    ALL our love and prayers,

    Matt and Tina Ivy

  • http://www.facebook.com/NicolleDPhotography Nicolle Ferrante Napolitano

    Chris…You write so eloquently…with passion. I suppose when you are faced with these odds, your words come straight from the core of your soul. I know you brother and Cheryl. My heart aches beyond what I could put into words here…I am a Mother. I feel myself stepping into each of your shoes. Your wife must have strength beyond imagination. Your daughter…a heart of pure gold. I lost my Dad to Lung Ca. just 3 short years ago. EVERY day has been a challenge. He was my best friend. When I read the words and interaction shared with your daughter…I am becoming her. You must light up her entire universe. What a blessing. I am so very sorry you face such hardships…I would do anything to “save the day.” I commend you for being strong enough to share your journey with us… and the emotions of your family. I am praying for you~ sending you positive vibes, light and love…and thanking you in some strange way for getting my tears flowing and my mind working itself into deep thought~

  • Robb Watters

    Chris,

    You eloquence and grace are a testament to us all. Our family continues to keep you in our prayers and will continue to offer our support wherever needed. Stay strong and remain resolute in your determination. God Bless, my friend

  • Kathy Chard Chapin

    I’ve put off reading this since yesterday and now I know why! I can’t put into words how you, Dena, Kate and Josie touch my heart. I continue to pray each day for you and wish there was more I could do. Stay strong Chris , you are truly a special person! Love you all, Aunt Kathy

  • http://www.facebook.com/efusco Evan Fusco

    Chris, I love you man. My heart is with you and your family though this time that is unfair for any family to bear. Enjoy this time you have. Do something unexpected. Take the kids out of school and fly to China, or to a cabin in the woods or whatever. You CAN tell you kids, they’ll understand…and they never will understand, but your honesty, your openness, your love will stick with them always and be more meaningful to then than any sort of “protection” you give them by not telling them. The how part…there is no good way…just be who you are and they will love you for it.

  • jennifer imo

    I really have no words to respond to your post but that we love you guys. I also want you to know that your story about Grandma Virgin Mary got me through the end of the marathon yesterday. Thank you!!!!

  • Diana Ludlow-Thorpe

    Love and prayers

  • Nancy Black

    You all continue in our thoughts and prayers.
    Your writing is amazing and moving. I wish there was something we could say or do to make a difference for all of you.

  • Patricia Alana

    You are in my prayers. God has given you an awesome ability to reach many folks. Your writing is amazing and moving! I am lifting you up in prayer tonight! God bless you! Please don’t give up! Believe in miracles! I am sending the Chris & Dena Battle family; my warmest Aloha!

  • Kathy Mason

    As always, you and Dena remain in my prayers each and every day.

  • Margaret and Chuck

    Every thought of you is a prayer of love and caring for all of you. Think Journey’s ” Don’t stop believin’ “. You are in our hearts…hugs wrap around you.

  • Michele Becher

    Chris, you have made a difference…a positive difference…in so many lives. I think of all of you every day, and I am praying for you. Dena…you are a rock…please don’t try to be an island. There are lots of people that you can reach out to. Michele and Todd Becher

  • Laura Taylor

    Chris your words lift so many of us to a place where even though we can’t find our own words — you do! This battle –this journey is awful (we hate this Kidney cancer too) even though you make it humorous (amazing skill noted). We walk with you thru these similar days –trying to work — raise children — dr visits — hospital stays and just hope one day to be a little “normal”. Our family is there with you and your family — thank for being our voice and our emotion — tough days but great reflection on life with the Beast — hang in there Buddy — and as always thanks for sharing your life and as sad as it is — we are glad to know another precious family walks a similar path as we do! And for a moment — we feel normal for awhile! Much Love and Peace from TEAM TAYLOR in Florida!!!!

  • Carmen Gillespie

    Thank you for this. What a beautiful writer you are. Thinking of you and your family.

  • Denise Toolan

    Chris, you have so many gifts that are so eloquently portrayed through your writing. I admire your courage and warm sense of humor through such a battle with cancer! Please know that I’m keeping you and your family in my prayers during this difficult time. Allyson shared this with me today and i am honored to have read such a perspective from such a gifted writer. With my most sincere appreciation.

  • Sally Stacey

    My eyes are filled with tears…. For you, for Dena, for your children and your family…for my husband Richard and myself and for everyone that this horrible beast has attacked! Your words are powerful and filled with emotion and strength and the right words will be there when you are ready to share them with your girls!

  • Karen Jones

    Our heart goes out to you and your family Chris! Since we found out my hubby has Stage IV Kidney Cancer in February someone told me to follow your site. You have given me so much motivation personally. Godspeed!! Praying for your family!

  • Paula

    I wish there were words … but there’s not. I too have kidney cancer and I had to stop afinitor because of the side effects to my mouth, holding steady right now. The day will come when I will have to tell my kids and grandchildren, but for now God has given me a short reprieve. The best of luck to you and God bless you and your family.

  • Robin Martinez

    This one made me weep, and I don’t weep often about stuff like this. I wept as I prayed that you and your family have enough time. May it be so.

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