I Am Lost

[This is the first part of a two-part post about my recent loss of faith and my subsequent attempts to rediscover that faith.]

I have been silent for a long time on this blog, at least by my standards. Those of you who may keep track of me through my occasional Facebook postings may have assumed that I’ve just been busy with life. I have been busy trying to live a life that is as normal as it can possibly be, but the real truth, the reason I have been so uninspired to write and have rejected the solace that writing has always offered me, is that I have been depressed and spiritually bereft, feeling weak and like a fraud to myself and to anyone who has found a shred of inspiration in my words and story. The truth is I have been lost.

On Facebook I’ve been posting pictures of my culinary achievements — short rib lasagna rolls, chicken pot pie, turkey soup with kale and loads of other vegetables. Those photos symbolized an ostensible return to “normalcy”, for before cancer, I loved to cook and had a little problem with buying too much kitchen stuff. Some people have an addiction to acquiring clothes and shoes; I had an addition to buying high-end cookware, kitchen gadgets and cookbooks. The best Christmas presents Josh ever got me were my 7.25 quart Le Creuset round Dutch oven and a $95 instant digital thermometer. For months after my diagnosis, I stopped cooking. The neuropathy from the first chemo regimen made cooking annoying and even painful. But more critically, I had lost all pleasure in food, convinced against all rationality that everything I ate would make the cancer grow. Ironically, during my most recent hospital stay when I was denied all food for 4.5 days so my bowels could rest to clear the small bowel obstruction, I obsessively watched PBS cooking shows on my iPad and drooled over David Chang’s fancy ramen noodles as I lay in bed weak from hunger; I vowed that I would never shun food again.

I also posted on Facebook a photo of our new car, a small SUV that we picked up Friday evening. In Dreams Forsaken, which I wrote in September of last year, I talked about the dreams that cancer had taken from me and the heartbreak that that had brought (and still brings); I declared then that I was done making plans and dreaming for the time being, but that perhaps one day I would have little dreams again, like planning weekend trips or buying a car. Well, after talking about it for years, Josh and I finally decided to buy a car, which is no small undertaking in New York City. It’s a considerable expense for something that we will only use two or three times a month, but we decided that it was a necessary part of moving forward with our lives, so that we could go hiking, pick apples in the fall and explore cute towns on the weekends.

By autumn (hopefully), I will post photos of our new professional redesigned living space. I hired an interior decorator in February to redo our great room, our combination living and dining room and kitchen. Our sofa is disgusting; six years of wear and tear and the abuse of two children have left it stained, sunken and sad. I decided in December that we needed a new sofa at the very least (a sentiment with which my sister and others enthusiastically agreed); one attempt at sofa shopping with two kids in tow convinced me that I required some professional assistance. Since cancer is a constant reminder that life is short and since I’ve always wanted to live in a professionally designed space (because I lived in the most undesigned and aesthetically unappealing spaces growing up), I prevailed upon Josh to agree to the expense of an interior decorator. When I told him that this would be the opportunity to upgrade the TV and speaker system, he agreed. So in between surgery, hospitalizations and chemo treatments, I’ve been meeting with the designer to review plans, selecting fabrics and materials and picking furniture. Cancer or not, life moves forward and demands that we take charge or else be dragged along. And the fact that I was answering life’s calls seemed to attest to the fact that I was discovering a new normal.

But behind those photos and the rush of activity, behind the smiles and my seemingly upbeat statements to everyone about how I was so glad not to be in the hospital, to be walking upright and to not be in pain, behind the semblance of normalcy, I was broken emotionally, more broken than I can remember ever being. Often times, choosing fabric, researching cars, cooking a new recipe, all these ostensibly life affirming acts of normalcy, felt like me clinging to a piece of wood in the vast ocean, acts of grave desperation that would only put off for a time the unavoidable truth and great inevitability, the truth being that I have cancer and the inevitability being that I would eventually die from that cancer. No doubt, my mind and spirit had been traumatized by my 30-hour experience in the ER at Mount Sinai, horrified by and ashamed of the person I witnessed crying pitifully and pathetically to my siblings about wanting to give up. But it wasn’t just the trauma of the ER experience, but rather the weight of the last ten months and all that I’ve seen and experienced and the knowledge that the road ahead, a metaphor for my uncertain future, is fraught with more bumps and setbacks. When I was first diagnosed, I may have been shell shocked and felt like I’d been run over by a truck, but I was like a marathon runner at the starting line, nervous but full of the energy from last night’s carbo load and the pounding adrenaline brought on by the screams of the crowd. I was untested by this disease; I could spew all the war rhetoric about fighting and beating the odds; I could believe the positive spin that the doctors were so adroit at casting on my situation – more like Stage III than Stage IV, just six months of chemo, youth and strength would help me. Ten months later, I am dazed with fatigue and pain, uncertain how much of the race I’ve run and how much further I have to go, having lost sight of the finish line and all of the optimism I once had. I’ve felt crippling physical pain, the kind of pain that made me want to die. I’ve cried uncontrollably more times than I can count. I’ve watched others, new friends and acquaintances, endure recurrences and surgeries, search desperately for clinical trials and make difficult decisions about stopping treatment, and I wonder if I’m headed down the same path.

As trying as the surgeries and the pain and the stress of making the big decisions about treatment have been, it is the daily grind of living with cancer that is just as debilitating if not more so. That grind makes my war against cancer feel like a war of attrition, fought in the subtle but deadly trenches of the human psyche. The process of putting one foot in front of another, the very attempt to act sane and live a “normal” life, to engage in social niceties with close friends and strangers have left me exhausted, alone, bitter and angry. I took my girls to two birthday parties this past weekend. The first was for one of Belle’s friends from school. None of the parents in Belle’s class knows about my diagnosis. So when I stood there making nice with the birthday girl’s mother, a beautiful tall woman living in a beautiful glass building on the edge of Prospect Park, everything made more beautiful by the glorious blue of the spring day, I wanted to scream at her, “I have fucking Stage IV colon cancer!!! Do you have any fucking clue?” The second was a joint birthday party for three of Mia’s classmates held at the carousel in Brooklyn Bridge Park with spectacular views of the towering skyscrapers in lower Manhattan as the backdrop. The parents in Mia’s class know about my diagnosis, so I was left to answer awkward questions about how I’m doing from people who may or may not care, so happily ensconced are they in the unblemished perfection of their own lives, or, if they do care, are afraid to pry; “Oh fine. Just hanging in there,” I say vaguely. I want to scream at all of them too, “This is SO FUCKING UNFAIR! I DIDN’T DESERVE THIS. MY CHILDREN DIDN’T DESERVE THIS!” But of course, I keep these and millions of other bitter, angry and unkind thoughts to myself. I don’t break social decorum and I keep my fake smiles firmly plastered on my face.  (Instead, I just break social decorum by writing all this here.)

Unconsciously, I use the thoughts to form a wall around myself, a wall with which to keep the person I love most in this world out, my poor, beleaguered, hurt, exhausted, terrified Josh. I lash out at him in anger; I push him away; I don’t tell him what’s really on my mind; the thoughts are too involved, too depressing, too sad, too imbued with guilt. I feel guilty for marrying Josh and ruining his life. I was the last girl Josh or anyone from his family expected him to marry when he was 10, 15, 18 or even 25. Let’s be honest. He was born and raised in the true South, in the mountains of South Carolina where the Confederate flag still flies in that state’s capital. He went to an Episcopalian parochial school from kindergarten through twelfth grade and then the University of South Carolina for undergraduate and law schools. No one would have dreamed in a million years that he would marry a legally blind Chinese-American girl born in Vietnam, raised in Los Angeles with the occasional ritualistic Buddhist tradition and educated in the distasteful liberal and Yankee institutions of the Northeast. I can’t help but think that if he’d married a blond, Christian southern debutante, then I and my illness would have never ruined his life. I know, if I hadn’t met Josh, then Belle and Mia would not be here and they are our greatest joys. The guilt isn’t rational.

Josh is angry too, angrier than I. He lashes out at me too even though his anger is directed at the gross injustice of all of this, at the unseen forces that shape our lives. Why is this happening to us, he wants to know. He feels an irrational guilt too. He thinks that he should have done something to save me, that he should have known that cancer was growing inside me. The guilt eats at him like a parasite. He goes about his life, almost as if everything is normal, working his long hours and thinking about convoluted investment structures that comply with the Internal Revenue Code, putting on his dapper suits to meet clients and close deals, in a sick twisted manner finding some escape in the pressures of work. What’s hard for him are the memories of our life before cancer, especially now as we near the one year anniversary of the diagnosis. The NBA playoffs this year trigger thoughts of last year’s playoffs and how we were so utterly and stupidly clueless a year ago. My return to cooking reminds him of what he calls our “Halcyon days”, those innocent days before cancer when our lives were carefree and happy. But like me, what’s hardest of all is to operate under the strain of trying to be normal. He agreed that buying a car would be a good idea, and as he sat with Lenny, our car salesman, making small talk, he wondered what would happen if he yelled, “My wife has fucking Stage IV cancer!” And like me, he said nothing and we drove out of the dealership with Lenny never knowing the truth.

Like me, Josh uses his bitter, angry and unkind thoughts to construct a wall around himself to keep me away. Consequently, we are both left feeling so very alone in this journey, not only vis-à-vis the rest of the world (for certainly the people we interact with on a daily basis have no inkling of what our lives are like) but even vis-à-vis one another. I don’t know exactly what he thinks in his isolation, but in mine, not only am I convinced that everyone in the world has abandoned me in the business of their own lives, given me up as a lost cause, but also that that my life partner, the one person who should never leave me, will, ushered along by regret in having ever met me, eager to move on with a life without me.

The fundamental belief that underlay all my thoughts, that ran through this deepest depressive state that I’ve known is that I will die from this disease, perhaps not next year or the year after, but eventually. Even though my scans have been clean, even though my surgeries have been very successful, even though my team of doctors and Josh (who is smarter than anyone else I know and is certainly more educated about the prognostic indicators for this disease than any lay person including myself) believe that my disease is curable and that I am far from a terminal case, I couldn’t shake this conviction. To Josh, in the midst of a fight I would say things like, “What’s the point? I’m going to die from this anyhow,” slamming the door on him in a fit of despair. I googled the most painless way to commit suicide. When he could escape his own anger at me for saying what I said (a very righteous anger), Josh would sometimes come after me, saying things like, “Are you giving up? I’m not going to let you give up!” None of his words penetrated the wall I had erected around myself. So I would lie in bed crying into the darkness.

I thought for a time that such a conviction was merely a coping mechanism, an attempt at managing expectations and disappointment, a mental trick by which to get myself to live more completely in the present. But then I started to realize that it stemmed from something more troubling and destructive – a loss of faith in myself and possible a higher power that I couldn’t seem to rebuild after ten months of battling cancer, most recently after confronting crippling pain from a small bowel obstruction. I wanted to give up in that ER. I wanted to die. I alluded to my loss of faith in my previous post when describing the effects of 30 hours in the ER.

Many have described me as strong and for all of my life, I too would have described myself as strong; I have always prided myself on an inner toughness, courage and tenacity that have allowed me to overcome legal blindness to achieve academic, professional and personal success and to travel the far reaches of the Earth. But never have I felt so spiritually weak, defeated and destroyed lying in that hospital bed, not even last July when I was first diagnosed with cancer. It was devastating for me to witness and acknowledge the limits of my toughness, courage and tenacity last Saturday and the trauma of that day still haunts me now as I seek to rediscover a fragile physical and emotional strength that might again crumble like a house of cards at the next obstruction or whatever else lies in wait for me in this relentless war against cancer. This fundamental belief and confidence I’ve always had in my own ability to handle my problems, to rise above adversity, have been shaken to the core, and I’m still trying to figure out how or even if I will ever be able to rebuild that faith in myself.

Without that faith and self-confidence in my own strength, in the very person I have always known myself to be, I was lost.

[To be continued in next post.]

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21 Comments (+add yours?)

  1. Vivian
    May 19, 2014 @ 17:16:25

    Julie, I hear you fiercely. Our situations may be somewhat different but I totally relate to the anger you feel in social situations surrounded by what we assume are healthy people. And I often feel guilty over putting my husband through this, thinking he’d have a much easier life with a different wife.

    Reply

  2. Cindy Luongo
    May 19, 2014 @ 17:18:59

    Wow Julie what beautiful truth. We cancer patients have all gone to these dark places in our journeys.. In a funny way it is so comforting to hear someone share these deep dark thoughts…You are not alone Julie I have been there too..thank you for being, so real so open, you are amazing!

    Reply

  3. Bill Simpson
    May 19, 2014 @ 17:29:51

    Julie, in spite of being angry, or maybe because of it, I love your honesty.

    Reply

  4. Tyler
    May 19, 2014 @ 18:11:38

    Julie, you can do this. This may be like when you were crossing the ocean with the waves lapping up on the boat and trying to take you and those with you into the depth of the ocean. You reached the other side. I know you can do this.

    Reply

  5. Katie
    May 19, 2014 @ 18:32:29

    Julie, I am right there with you. Thank you for once again expressing yourself so honestly and eloquently. Keep focusing on life.

    Reply

  6. Jeanine
    May 19, 2014 @ 18:36:16

    Julie,

    I am a cancer survivor, warrier (1 year) – what ever you want to call it. No one is promised tomorrow. Not even healthy people. I hear you loud and clear. Many people can relate to you. We each have to find a way to deal. Your husband loves you and CHOSE YOU. You should never feel guilty. Don’t shut him out. Reach out to him. He needs you as much as you need him, right now. Let him be your source of strength. Don’t think that there will be another bowel obstruction because there may never be. Plan your future. I know someone who is 5 years from stage IV colon cancer. When she found out she had it, she had tumors in her lung, liver and colon. They were all resected. She went through chemo. She is fine today. By the Grace of God. Live your life with your beautiful family. Hopefully without any pain. Pain is a game changer, for sure. This blog is also your outlet. Just typing the words is a release. I will keep you in my prayers, Julie. You are an inspiration for all you have overcome in your life. You, too, can beat cancer. Half of the battle IS in our HEADS. Don’t give up. I am rooting for you. Praying for peace and healing. xoxo

    Reply

  7. Belle Piazza
    May 19, 2014 @ 19:29:20

    I hate to tell you Julie, but I think we all go through this. You seem to be going through the stages faster than I did; perhaps because you were diagnosed at stage 4; I was diagnosed at stage 3 and for a brief moment, thought I’d actually been cured. Not. I’m glad Josh hasn’t given up. I hope he never does. Sometimes you need someone in your corner to have faith in YOU despite the circumstances and situation. You also need a very close friend (or two) who you CAN share all this with. For me, this is not my husband, but a close girl friend (or two). I have been blessed to have some very strong women in my life who I can lean on very hard – and despite how dark my world gets, I haven’t scared them away yet. I hope that you have or are able to find the same in your world. Your relationship with Josh sounds identical to me and my husband. I wish I had magic answers and advice to resolve this – I have nothing. For what it’s worth – you are not alone. I know it feels that way – a lot of the time; but we’re out here. Just wish I was closer.

    Reply

  8. Debbie whitmore
    May 19, 2014 @ 20:38:32

    I think Belle said it beautifully. We can relate to what you are feeling. Days will get brighter and easier. You are blessed to have Josh and he is blessed to have you. When I was having a tough time, my friend said to think of a cancer diagnosis like waves in the ocean. The waves come on to land, strong and rough, but then retreat back calmly into the sea. Xxxooo

    Reply

  9. Maria kucharek
    May 19, 2014 @ 21:27:02

    Julie, as Belle said, we been there felt what you are feeling now. And yes your life made you stronger then you think you are. This will past, there are better days ahead of you, your husband and your beautiful girls. Julie I am always here for when you need to talk or cry.
    Love you my new friend.

    Reply

  10. Ann Brown
    May 19, 2014 @ 21:48:54

    Julie, this is beautiful. Raw, powerful, and beautiful. I hope it helps you somehow to write this out, because it touches each one of us, in our own unique ways, when we read it (as I can see from the prior comments). Thank you. As for the isolation that can develop between you and Josh, I have not been in your situation (“just” Stage 2 myself), but in the darkest days when my youngest daughter was battling cancer, it was truly difficult for my husband and I to find solace in each other. We both hurt so deeply, but in such different ways, and both, being strong willed, had built incredible defenses to hide our pain from others, including our spouse. I did find that other women who had traveled the same path were the best source of solace for me. Don’t know if that’s helpful at all for you, but wanted to put it out there.

    Reply

  11. AM
    May 19, 2014 @ 23:53:21

    Julie, continue to break down those walls of social decorum however you like. Your honesty in this world is the embodiment of strength and beauty, and so many people love you and are rooting for you even (or especially) on the dark days.

    Reply

  12. The Astonishing FartMan
    May 20, 2014 @ 03:12:19

    Thank you for your beautiful writing.

    Immediately after reading your last post (Silence and Stillness) I was

    inclined to write a comment repeating the trite but true saying: dealing

    with Stage IV cancer is a marathon, not a sprint. And to illustrate that

    concept I was going to mention one of my little medical misadventures, the

    story of one of my my post-surgical complications, a Hepatic Sub-Capsular

    Fluid Collection, AKA “Cappy” that I acquired more than three years ago and

    that still persists, although in somewhat reduced form. Most of this comment

    was composed several weeks ago, first in response to Silence and Stillness

    and then in response to Obstruction, but I was afraid to post it because I

    thought it might be too depressing. However, now that I see how depressed

    you’ve been, it seems unlikely that anything I might write could depress you

    further.

    So . . . As you might have divined by now, in my colon-cancer-fighting

    persona I am a Cape & Tights Super Hero (The Astonishing FartMan), and Cappy

    was my perfect sidekick–because he kicks me in the side all the time. Even

    though I finally formally dismissed Cappy and acquired a different sidekick,

    Cappy still hangs around kicking me in the side. So, anyway, in the

    aftermath of my “big liver surgery” that removed 2/3 of my liver (not to be

    confused with my “little liver surgery” that removed only 5% of my liver), a

    contingent of my small intestines migrated up into the empty territory that

    had formerly been occupied by the right lobe of my liver. This glob of

    migratory intestine apparently came into conflict and warfare with Cappy,

    who had established himself as a bilious semi-solid (10cm x 7cm x 5cm) in

    the capsule surrounding the remnant of my liver. The constant pressing

    conflict of the two antagonists has caused scar tissue (adhesions!) to grow

    around parts of my small intestine, gluing them to my liver and partially

    obstructing their function. So unto this day, I have constant abdonimal pain

    which worsens after every meal. Sometimes it’s mild; sometimes it’s severe.

    The good news is, over time the average level of pain has decreased.

    The story of Cappy provides me the adequate excuse and necessary

    justification to violate my prime directive (“Give No Advice to Others with

    Cancer”) to offer you both philosophical advice and practical advice. The

    practical advice, based on my experience with Cappy and based on talking

    with others about their experience, is that adhesions are an-all-too-common

    sequela of abdominal surgery, but most of the time they get better after a

    while and/or you learn ways to limit their bad effects, e.g., by being

    careful what you eat, by exercising, but not over-exercising the abdominal

    area. Walking and very gentle massage of the affected area seems to help me.

    Drinking a good amount of liquid with meals helps. Eating a moderate amount

    of foods with fiber helps. However, overly vigorous exercise, especially

    bending and stretching that part of my abdomen too much, will aggravate

    things; eating too much fiber at one time (e.g., a big green salad or a big

    bowl of oatmeal with raisins) will also aggravate things. Moderation is the

    key.

    The philosophical advice is, “Yes, this is a marathon.” (Before going

    further, I should apologize for that cancer cliche and for all the other

    cancer cliches you will encounter below.) When I was first diagnosed, after

    that initial shock, I easily put on a “fighting spirit.” Almost naturally

    one almost relishes the fight, because it is the right thing to do, for

    one’s loved ones, even more than for oneself. So I sailed through bowel

    surgery, and then sailed through chemo, and then sailed through a big liver

    surgery, and then sailed through more chemo, and then I was done with

    surgeries and with chemo and all that shit was “over.” And I thought, well,

    I’m NED now and that wasn’t all that bad. Yeah, I’m a little worse for wear,

    but I’m okay. I kicked some cancer ass. Okay, I’ve got some permanent

    consequences, but that’s all behind me now.

    But it wasn’t “over.” Just a few months after finishing chemo, I got a

    recurrence. So I had to get myself psyched up all over again, not just to

    face another major surgery, but also to live with the idea that I might be

    dead really soon. I discovered that the second time around it was a lot

    harder to get myself psyched up to fight again and a lot harder to get my

    mind adjusted again to the idea that I might soon be dead. So now, having

    been through a recurrence and gotten to NED again, I refuse to accept the

    idea that I am “cured.” It drives my wife crazy when I tell her I’ve pretty

    much accepted the idea that I will die of cancer. So it’s something we try

    not to talk about. Pretty nutty defense mechanism, right? It works for me.

    I understand many other people with cancer would have wanted to smack me for

    being so “negative” because people with cancer are required by statute to be

    “positive.” (Many of the “positive” ones who wanted to smack me are dead,

    but I’m still here, just as mean as ever!) When it comes to the psychic

    struggle with cancer, some people are Rah Rah Positivity Cheerleaders and

    some people are bleak black humorists.

    http://theastonishingfartman.blogspot.com/2011/05/comment-astonishing-

    fartman-recently_29.html Whatever approach lets you get to a sustainable

    bearable psychic condition without driving your family into substance abuse

    is probably okay.

    Another thing I discovered was that, just like it was harder for me to get

    psyched up again for a recurrence, it also got harder for my wife, my family

    and everybody around me (including my doctors!) to get psyched up again to

    fight another round. We’d all been through it before. The novelty had worn

    off. I apologize again for larding on so many cliches. However, old worn out

    cliches seem appropriate for cancer because after the newness of the

    experience passes, if you don’t get cured really quick, it’s just tiresome,

    tiring, boring, frustrating–in a frightening and depressing way. (Maybe the

    biggest cliche of all is that a long struggle with cancer is necessarily

    enobling for the patient himself, his family, etc. Wrestling alone in the

    dark with that impossible cliche can be brutal.)

    Something else I learned, which is something I thought I already knew, is

    that all human beings, myself included, are limited creatures. We can get

    worn out. It took me a while to learn this important point. One evening,

    when we were in bed, I was telling my wife some long dissertation about some

    troubling symptom I was having, and she fell asleep. Ouch! That hurt my

    feelings. And it took me a while to realize that her falling asleep was not

    a sign that she didn’t care what I was going through. It was a sign that she

    was tired, that she was worn out, a sign that she was pushed beyond her

    limit. It wasn’t that she was tired of hearing about my symptoms. It was

    just that she was tired, plain and simple.

    So the problem is, How do you keep yourself together and psyched up for the

    struggle when it seems like the “fun” won’t stop and the hits just keep

    coming? My answer is, there is no magic bullet. (I do so much apologize for

    all the cliches!) So you’ve got to use every trick in the book. And then

    when your bag of tricks is empty, get pissed off (within reasonable limits).

    But always pace yourself. Exercise moderately. When you’re tired, rest.

    Rest. Rest. Rest. Don’t try to do everything today. Expect disappointments.

    You can do this, but don’t overdo it. Just try to do the next sensible

    thing.

    Just do the next sensible thing.

    Just do the next sensible thing. Geez, that’s not very inspirational, is it?

    But cancer is not like the “big game,” when you go out on one single

    mythical Sunday and “win one for The Gipper.” Even when you are “NED” (can

    anyone ever say “cured”?) cancer somehow stays with you 24 hours a day 7

    days a week 52 weeks a year. Maybe not every minute. But a helluva a lot of

    minutes will be altered, some more and some less, by the fact of cancer.

    That’s tough to accept. The New Normal. How I hate that cliche! I have not

    completely accepted it and probably never will completely accept it, but the

    rational part of my being knows it’s true. It’s a curious sort of Catch-22:

    if I could ever accept that cancer has a permanent hold on me (even if I’m

    cured!), then maybe cancer wouldn’t have such a hold on me. But I can’t

    quite accept that cancer has a permanent hold on me because that would seem

    to be admitting defeat. When you get serious cancer (yes, there’s serious

    cancer and then there’s “serious cancer”), you have entered a new and

    different world. The door closes and locks behind you. And the cancer-free

    world looks inane.

    I swear I am not trying to be depressing. But it is depressing, as you might

    have noticed. So I guess it shouldn’t be shocking that, being a human being

    who has limits just like everyone else, you would get very depressed. Fine.

    Now just do the next sensible thing, which as you very well know, includes

    things like enjoying (or at least trying to enjoy) things that are enjoyable

    insofar as your immediate physical condition does not prevent you from doing

    so. One of my big motivations has been to try not to completely screw up and

    waste the time I have left. It’s not like I’m out there trying to save the

    world. It’s not even like I’m trying suddenly to be the perfect husband and

    father. Maybe some people would say that trying to be halfway decent is a

    pretty low standard. Realistically, cancer makes being a good husband and

    father rather more difficult than it used to be before I got sick, so

    perfection is out of the question. Nonetheless, I really would like to do a

    reasonably decent job of husband, father, etc., in the time I have left. So

    I’ve got to keep my emotions in reasonable bounds most of the time and try

    to keep the meltdowns to a workable limit. A dip in the pity pool every now

    and then can be refreshing, but don’t drown. This is easy advice to give. I

    just wish I was better at taking my own advice!

    And then (I was saving this for last) there is the contemplation of the

    meaning (or lack thereof) of the apparently pressing finitude of one’s own

    existence. Not just the loss of oneself. But also the loss of one’s loved

    ones, a loss that seems logically inevitable with one’s own death. You see,

    when I die, I not only lose my own life, I also lose my wife, I lose my

    brothers and sister, my father (not to mention my charming house, my little

    wine collection, my sweet little patio garden that I worked so hard to

    create, etc.). I have been around that block a thousand times, contemplating

    the meaning of my own existence or lack thereof. Here’s what I learned from

    those contemplations: In some respects when facing death it seems necessary

    and actually can be pleasant to try to think seriously about the meaning and

    purpose of one’s existence and eventual lack thereof. It is sometimes

    pleasant and also (I believe) the moral duty of every human being capable of

    doing so to think seriously about the meaning of both his life and his

    death. But as to the meaning of the latter, I can report that thinking about

    such things will only get you so far. In my case, although it seemed at

    times that I was making some modest progress toward real and deep

    understanding, I was never able to gain an understanding that brought me to

    a satisfied stopping point. Instead, I started going in circles. At some

    points it began to seem like a selfish vanity. So finally I decided, “I will

    allow myself to think about this morbid topic some, for a little while at a

    time, while understanding (to myself) that no great progress is to be

    expected beyond a certain point.”

    The point I settled upon and stoppped upon in my circular contemplations,

    the point for me beyond which not much progress seems possible, is: I surely

    wanted to have faith and did have some faith that existence (both my

    existence and the existence of the universe) was good on the whole, that The

    Creator intended that my existence should be good for me, for those around

    me, and for the universe, but that I could not know for certain what is The

    Creator’s precise plan for me or how He intended that the good I believe He

    intends for me and from me will be brought about in every particular. This

    belief in the overall goodness of my existence and the goodness of the

    existence of the universe, and the belief in The Creator’s good intentions

    for me and the universe, obviously does not prevent (and has not prevented)

    some horrid things happening along the way. As a limited creature, I cannot

    grasp how these horrid things fit into The Creator’s plan for getting good

    for me and out of me.

    Your rationality is wondrous and beautiful, a great virtue of which you

    should be rightly proud, so “just doing the next sensible thing,” can serve

    you well . . . if you don’t expect too much of it. When rational thought

    doesn’t answer every question, even when it leaves you hanging, terrified or

    angry, with some very important unanswered questions, that doesn’t mean you

    should abandon rational thought altogether and start acting like a crazy

    woman. It just means that when rationality reaches its human limit, then you

    must rationally turn to “other things” that are not purely rational: faith,

    love, hope, for example. Even though faith, love, and hope are not purely

    rational, rational thinking can lead you to turn to these irrational things,

    and rational thinking can guide you in the way you go about your faith,

    hope, and love.

    Sometimes I make ridiculously far-reaching longterm plans, as if I’m going

    to live to be a hundred, partly to stick a finger in the eye of cancer.

    Sometimes I do other things as if I’m going to die any minute(e.g.,

    explaining to my wife where I’ve stored the special “allen wrench” that’s

    needed to re-attach the kitchen sink knob that falls off with once-a-month

    regularity). In other words, sometimes I’m the conductor of the roller-

    coaster ride, because I get frustrated just being the passenger. It’s nuts.

    But it has a certain rationality to it. It’s my way of facing reality,

    whichever of the two might be the one that actually happens, and everything

    in between. Sometimes I think we should live as if we can never die, and

    sometimes I think we should live as if we will die tomorrow.

    Reply

  13. lisa
    May 20, 2014 @ 10:03:59

    Very powerful piece as always.
    I wanted to share a little of my mom’s story.
    Her relationship could not bear the stage IV diagnosis. Stage III, her and her partner breezed through but with Stage IV he began to reject her, find her off putting, no longer wanted to be near her and even found another woman, the cleaning woman (I kid you not). My mom died feeling rejected by her man, a relationship she invested 30 years in and always felt safe in.
    Why am I telling you this? As long as you and Josh are committed to each other, which you clearly are, and even if communication isn’t always easy, you are both doing a great job. Anger is pain and cancer brings pain, but your kind of love triumphs.

    Reply

  14. Laura
    May 20, 2014 @ 12:57:15

    i agree with Lisa

    Reply

  15. christine D'Ercole
    May 20, 2014 @ 15:03:36

    Julie. Thinking strongly of you. more than you know. Thank you for writing. Thank you for sharing. love, christine

    Reply

  16. Ralph
    May 20, 2014 @ 22:17:50

    My wife is Asian and I’m white. I’m the one with stage 4 colon cancer and while life isn’t easy we have each other and our Roman Catholic faith. Belief in God and prayer have become even more important in our lives and helped us cope with the challenges and stress. If that’s not the road you travel talking to a councilor or psychologist may help break down the barriers you talk about and ease the stress you and your family are going through.

    Reply

  17. Jodi Davis
    May 21, 2014 @ 11:14:07

    You have beautifully put into words that which I have been struggling to express for months now. I was initially diagnosed in July 2012, stage IIIb and elected for a total colectomy. I rolled into 6 months of chemo and ended it with the discovery of a meatloaf sized mass on my ovary. I went back into surgery for a total hysterectomy and another 6 mo round of chemo. I fell into a hard, dark depression when I felt I should be happy and grateful it was found. I slowly began to crawl out of my ‘funk’ as the first scan came back clean, then optimism radiated as I went for my second scan in 6 months. I felt confident and more like I had since being diagnosed, but as I neared my next scan at 9 mo, I felt worry and unease. I didn’t convey how anxious I really was to my husband because I didn’t want him to worry that deep down I felt like it was back. I was like the neurotic patient waiting for my results that day and my fears were confirmed. The damn cancer was back…..not only in my pelvis but also with spots now in both lungs. Why? My oldest daughter just got engaged and my baby graduates from high school in 3 weeks and I have two stepdaughters with 4 years left of school. So as the reality hit me harder than before that this damn cancer may truly kill me, I put on my optimistic front and just take each day at a time. I have always said I want to live to be 100 – to watch my children’s, grand children’s, and beyond lives unfold…..I don’t want to be cheated. I am a stubborn fighter and my husband doesn’t understand how I seem so calm overall —but that is only because he can’t see the fear I feel or think the scrambled thoughts I can’t control. All I know for sure that I can control is my attitude and I try really, really hard to maintain it at a level I would admire in someone else. I minimize so much of this nasty cancer for my girls because my job in life is to be there for them – and I don’t want cancer to rob them of any further joy of being young. I am sorry to have rambled on, but thank you for writing so honestly and letting us know we all ride and feel this roller coaster together.

    Reply

  18. Kit Grady
    May 24, 2014 @ 12:38:33

    I don’t say much, as I keep my words inside but do want Julie and all of you to know how much I appreciate reading all your powerful, powerful words and thoughts. As my hubby rides this horrible roller coaster, I’m riding in there with him, holding on tight, I would never be anywhere else. Thank you all for your honesty and thoughts.

    Reply

  19. greenmonkey27
    May 25, 2014 @ 12:41:34

    Julie, I appreciate every word you wrote. It’s so important to those of us who are trying our best to live with our cancer. I haven’t gone public on this one, but I have yet another biopsy on Wednesday, this time on my thyroid. It doesn’t look hopeful. The thought of chemo AGAIN, so soon, beats me down. I’m still trying to learn to live with the new plumbing. Today’s worry is that I have a blockage. Memorial Day is the anniversary of my son’s death. I don’t trust my husband…. its all so ridiculous but it truly helps to know I’m not the only one who is not smiling on the inside. Your honesty is appreciated and respected. Much LOVE to you, Shannon

    Reply

  20. Kispangit
    Sep 08, 2016 @ 03:30:21

    An honest piece

    Reply

  21. Scott B
    Apr 12, 2017 @ 09:45:27

    Julie, I have just come upon your blog, and have read in its entirely. Your journey ( I hate using that expression) really made me stop and think and better understand my own situation. My wife, like you (although 10 years older) has stage IV rectal cancer. She has done it all, and has continued to be her own advocate. My wife is one who will not share her inner thoughts, but however by reading your journal it has given me a better understanding of what she is going through, and I think it will make me a better husband. Thank You.

    I, like Josh find myself trying to figuring things out. What will the next part of my life be like. Will I have a life? Will the kids think if I do find another partner? I could go on and on, but what I have to come to realize is all you can do is live your life, and offer support, and when I start filing sorry for myself, I think of what it must be like for the person with the cancer and what thoughts go through their mind. Thank you for your blog. It has provided me with some insight.

    I really don’t want to end with one of those sayings, but I will pray for you and your family, not sure these days if they help but I know prayers can’t hurt.

    With much appreciation
    -SB

    Reply

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