“Lament of a Caregiver”

 

Over the past couple of months, many of you have asked how I was doing.  It is a difficult question to answer beyond a simple “fine” because there is so much involved. So, a while back I started trying to formulate what my true status is after two-and-a-half years of serving as caregiver to a cancer fighter whom I deeply love. This is very much a part of our journey and I thought that those of you who have walked this road with us deserved to have that “how are you doing” question answered at a deeper level. Thanks for being a fellow traveler. Jim

 

HERE IN LIES MY TRUTH – LAMENT OF A CAREGIVER

It has been a while since I have written. Mostly because I have been busy with work trying to make up for the time lost living half of last year in Seattle. But also because it is simply too hard to put into words what I feel in my gut.

Up until February it felt like Janice and I were gradually returning to some level of normalcy. Day by day it seemed this dreadful guest named cancer had begun packing his bags and making motions toward bidding us adieu. Each day increased our confidence and lessened the fear that tomorrow would require a quick trip to the doctor for what seemed a minor reason but proved a problem requiring a several day stay in the hospital.

October brought along with its blustery season some back pain for Janice. It scared us but dropped away like the leaves on the trees outside our windows. An occasional rash or ache distracted our contentment but amounted to little. Janice was eating better and gaining weight. Each day dawned for me with expanding hope - a wife who was brighter, more engaged, looking toward the future, and best of all, writing. Her new glasses, while not a complete fix for her visual problem, made a tremendous difference and we hoped she would soon drive again. Our dream for after Christmas went something like this: we would celebrate this seeming recovery, join the YMCA together and work out in the evening after I finished work. We had reason to hope for “normal” years ahead and for the chance in the foreseeable future to put the past two years of struggle behind us.

Then came February and shoulder pain which at first, we dismissed as another recovery pain that would go away as her back pain had. When it worsened we were quick to blame it on an injury. She pulled it vacuuming the house. Yeah, that’s it, vacuuming.

 

All of that optimism slammed head on into the wall of reality on February 6th, 2006, in the vehicle of one brief email. Two weeks after the good Doctor J had happily told Janice to “stay away till March” since she was doing so well, I opened Outlook to check messages before going to bed.  “Jim,” ran the Doctor’s message, “I tried calling your cell phone and only got your voice mail so I apologize for having to communicate with you via email.” Next he wrote, “We’ve found a growth in Janice’s shoulder that needs a closer look.”  Imagine thinking that we were at last home alone only to see the guest room door slide open and that grinning intruder smile. Our silent visitor hadn’t moved out after all. He wasn’t packing; he had no intention of leaving our house. In fact, this bastard named Cancer wasn’t going anywhere and had every intention of skating across the hardwood floors of our home and hanging around the corners of our lives for a good long time.

Until this email, I was extraordinarily hopefully, but after confirmation of a tumor, after shoulder surgery and verification that Myeloma was back, I lost my grip on confidence. My “we are going to whip this” started to wane. I was suddenly overwhelmed with oppressive and unshakeable fatigue. I started to sense (or imagine) a shift in the encouragement we were receiving from friends.

 Whatever did it mean when a friend said “God has allowed this to happen to Janice with some tremendous purpose in mind”? My idea of ‘purpose’ to that point was her recovery. The tenor of the phrase, “You will never know all the people that have been affected by Janice’s strength,” seemed to imply that while they weren’t sure she would rally, certainly others would. It’s probably true, as one man said quite kindly, “You won’t know until you get to heaven everyone who has been affected by your struggle,” It’s just that I hadn’t thought that direction before. I might be wrong but I sensed a subtle shift from the “rah-rah, go get’um Janice!” to some consolation prize – others would be worthily affected by her brave battle. She might not survive, but God would be glorified. What was stated as encouragement became more and more crushing.

 Finally, the shift culminated with a number of articles we received concerning our uninvited guest, Cancer.  The straw that broke the camel’s back for me was a piece that elevated my energy enough to want to find the author of “How Not To Waste Your Cancer” and punch him out.  Let it be known - Janice and I have learned well the lessons of ‘not wasting’ cancer and those fine lessons are stacked high in every corner of our lives. Granted, the author of the piece found his opinion perfectly suitable for his situation, a view he encouraged others to hold. Personally? I was willing to hold it under water long enough to drown it. I confess, my anger toward the article was a refreshing diversion from the moment by moment, day by day sorrow I was experiencing. Funny how small things can trigger the large emotions that accompany this journey.

Now, let me stop here and say that if you are reading these thoughts of mine, and you are a friend who possibly said one of these things or sent us an article (especially that article), please don’t take offense or worry about it. I know at this point everyone who loves Janice has been grasping for some meaning in all of this, looking for understanding, and more importantly for some means of expressing comfort.

I hope you all know that one of the indelible treasures of our journey is the deep love we have received, have felt and continue to feel from all of you, those we have known for years and those we have never met but who have faithfully prayed for us. We have an inexplicable love for you all and we know that every prayer you have prayed, every e-mail you have written, every person to whom you have passed our updates, you have done it with tremendous love and affection, and we are honestly without means to express the profound effect of your touch and concern.

I’m absolutely grateful for all the voices calling out to us along this path – God knows we would be lost without them. But now? Now I’m trying to find my own voice, knowing the necessity of it. Here, then, is the core of all I’m feeling in my life right now, all I am capable of feeling, what my life hollers. Herein lies my truth:

When I strip away the highs and lows, the accomplishments and failures of life, all the ups and the downs, I am sure of only this - all I want, have ever wanted to do in this life, is grow old with my precious wife…waking up, feeling her toes on my toes, her breath on my neck, living life together day to day until both our bodies are wrinkled beyond recognition. If I am an ambitious man, my ambitions worked only because they grew from the expectation that I would sit beside her at our sons’ weddings and be with her when our grandchildren play at our feet. 

Like all couples who have grown into a relationship of deep love and trust, I guess I have always hoped that somehow we would hold each other until at some point all of the breath would drain from our lungs as we both slip into eternity at the same time, neither having to feel the pain and stark loneliness of living one moment without the other. 

I am also sure of this – in the last months I have struggled to maintain the role of caregiver, cheerleader, to be the one leading the charge into the future, saying we can fight this battle, we are going to win this thing, we will not be defeated.  It’s very difficult to drive this attitude forward when the gears of life seem locked in reverse, when my dear wife again faces a return to treatment that she already endured at the very beginning of this journey. 

I am battle weary from dodging the weapons fired against my “rah-rah” as her body weight drops below 95 pounds, as she limps across a parking lot, or struggles with stairs because of a tumor here or an infection there; when she’s heavily drugged against severe pain from radiation’s deep burns, or the lingering remnants of surgery; when those damn “spots” keep popping up on her frame even though the treatment she is receiving is designed to control further progression. And if that litany of ailments weren’t enough, let’s add the twelve inches of her colon which died, turned rock hard, forcing her whole large intestine to be surgically removed and replaced with an ostomy bag that benignly hangs against her belly as one more battle scar.

Not many days ago, we sat in a cool, mauve color-coordinated examination room and felt it grow cold and colorless when the doctor who shared that space with us advised that we start thinking of the quality of life versus the quantity.  Reason leapt to the front of my mind. I rationally understood the meaning of his words but my gut understood more truthfully.  I wanted to scream “NO!”   Give me quantity, thank you. Quantity is a good thing, many years, that’s what we want. Time. Lot’s of time, together.  We promise, God, that we will also work on the quality thing if you just give us more time!

I HATE this journey, but not for me. I hate this for my gentle bride who endures the pain, frustration, fear, and relentless struggle that her life has become.  My pain comes from watching, from attending, from the hated helplessness my role carries. It comes from sitting on the side lines watching the doctors literally carve away my wife’s beautiful body, piece by piece. Meanwhile, while we fight these battles, I hear that damnable guest of ours in the other room, rearranging his things, settling in, with no intention of leaving.

Hard as all this is, I am glad for one thing: in the midst of everything, I have not for a moment blamed God for giving our address to cancer. Questioned, yes, but not blamed. For some reason, I have an underlying confidence that allows me to know that God hasn’t caused this; it isn’t part of some cruel, sadistic scheme, nor some glorious purposeful “only through Janice” plan. I know she isn’t being offered up by the Almighty to somehow save the world.  This is what it is: cancer. It is a result of a fallen world, a world that throughout human history has been neglected, abused, filled with chemicals, pollutants, and contaminates. Throw in the chancy genetics we each inherit and there is a very abstract and reasonable explanation for my wife’s disease which caused her body to reel out of control, her bone marrow to produce weird malignant cells that continually find new ways to damage the perfect balance God initially intended for the human body. I am confident of this: God hasn’t personally delivered this disease, it’s not a gift nor a punishment; he hasn’t caused her multiple myeloma. Cancer is what it is: ugly, hateful, angry, aggressive, destructive, and pervasive.  

I suppose it is because I strongly hold to God’s reality, and, at the same time just as strongly hold on to human responsibility, I have been able to deal with the presence of  our unwanted guest.  

Janice’s diagnosis actually fell on about the fifth year of what I now identify as my dark night of the soul…a period when the presence of God was not only absent, but his silence was deafening. During this season, I truly believe that I would have walked away from my faith had it not been for the foundation laid in my life as a child. Or, as I perceive it, perhaps it was more than a foundation. Perhaps what holds me acts more like banisters on either side of a staircase; whether I’m climbing up or down, I’m am holding on.

 

The Sunday before writing these thoughts, I sat in church and remembered an experience in worship that I had back at the beginning of this journey. We congregants were in the middle of singing Tim Hughes’ song “Here I am to Worship.” I remember a wave of disgust washed over me (I was charging down the staircase) and the words meant for worship took a sudden and violent turn:

Here I am to Worship

Here I am to bow down

Here I am to say that you’re my God

As I sang the first line guile filled my throat, angry tears burned my eyes and the only response I could think of to end those first three lines were:

And where the Hell are you God?

As a family we had fumbled our way through five really tough years. I had lost my job in the corporate downsizing of the music industry, started a new business, Janice was in the middle of writing another book, and we had painfully navigated and were still in the middle of raising two complex teenage boys, finally sending one off to college. Quite honestly the infrastructure of our lives and our marriage felt like it was coming apart at the seams. Every new disaster unraveled the fragile threads that were barely holding our world together. During a week when Janice and I were both feeling we couldn’t take any more, we got the call…the diagnosis…the news of cancer. Thus my angry response.

Jump to a few Wednesday nights ago when we learned that Janice would have colon surgery the next day. My son Elliott called to find out how I was holding up. Somewhere in the discussion, he said, “You know, dad, it’s weird. There are about 10 people up here (Boston), people I don’t know very well, but they know about mom. They come up to me and say things like, my mom had cancer, my dad died recently, you know, stuff like that. For some reason when they say, I am really sorry, or, I will be thinking or praying for you, it means a whole lot more than the stuff other people who haven’t gone through anything like this say.” I quietly listened as he spoke with tears running down my face, and finally said, “Elliott, it’s called the fellowship of suffering. People who have truly felt pain and sadness truly feel our pain and sadness.”

Then and there I realized that in this fellowship lies the answer to my enraged cry to God two years earlier. In this fellowship is the answer to the questions I frequently face during the nearly intolerable dark, pre-dawn hours when I lie in bed listening to Janice’s haunting moans and staggered breathing.

Where is God? Well, presently he permeates my suffering, my pain. At the point when I hurt more than I have ever hurt, when I can’t imagine that anyone knows or understands the ache that has become a part of my everyday life, I wander around our house viewing the numerous crucifixes we have collected over the years from around the world. As much as I have always been drawn to the image of Christ on the cross, I have never known this image to be so personally significant, never known this icon to cause me to crumble, never so thoroughly identified with its blaring message: redemption comes through suffering. I must confess, I never expected suffering to provide such a profound point of connection, so much clarity, of the true meaning of the Cross.

So when my spirit screams “…where the hell are you, God?” my questioning void is filled with the companionship of the one who cried, “My God, My God, why have you forsaken me?”  There is no formula here, people; no four easy steps to lead us into understanding grief, no purpose driven “ah-ha” to explain why all this is happening. Christ simply and passionately hikes up his robe, sits down next to me, pulls my tear stained face into his chest, and he weeps…he weeps with me, he weeps for my wife, he weeps long, deep, body rattling sobs, with snot and tears dripping from his chin. He weeps. From the bowels of one who has felt forsaken, who has felt loss, who aches when I cry “This just isn’t fair!”, who truly feels my pain, he weeps.

And in his tears, in that sacred space called sorrow, I know God is there.

 

"All material, unless otherwise noted, are owned and copyrighted by Janice Chaffee and James Chaffee, © 2004, 2005, 2006. Permission is granted to forward e-mails, or print for personal use only. No portion of these updates may be quoted in part or whole in any published material or on any internet site without authorization from authors.”