Courage and Love

Who has more courage – (1) the cancer patient who presses on with grueling treatments that are of dubious benefit in the infinitesimal hope that they will prolong life until something better comes along, or (2) the cancer patient who simply walks away, choosing to feel good for as long as she can and then seeking palliative treatments only to mitigate pain before the inevitable happens? This is a question that has plagued me for nearly as long as I’ve known that I have cancer. As you may have surmised, I put a great deal of weight in courage and bravery. I want to be remembered as a courageous person, one who, instead of running from cancer and death and begging for my life like a wild, crazed animal, stood there and stared them down, all the while acknowledging and embracing the reality and my fear, anger and sadness that is reflective of an aspirational inner strength, dignity, grace and beauty. But which path produces that result? Based on how we as a society seem to love sports stories and movies about protagonists overcoming impossible odds, I believe the general consensus and more popular view is (1). I understand that – the long-suffering patient who endures so much to spend just one more day with her loved ones, even if it comes at an incredible emotional and physical toll. But then again, it takes tremendous courage to stop all treatments and to let the disease run its course, because then gone is any semblance of a safety net as that person invites death to quicken its arrival. Isn’t that person then truly staring death in the face? Isn’t that person then choosing death on her own terms with dignity and grace? Or is that person truly a coward, a horrible wife and mother, too weakened, defeated and exhausted to fight any longer, not even for the faintest promise of one more day with her beloved children, handicapped by an inferior love that does have limits? 

Or maybe the answer to that question is personal to each individual based on a subjective determination as to which path is easier – if there is such a thing – and that true courage goes to the person who takes the path that is more difficult for that person.

For me, the easier path, the path of less resistance is (2). And I suppose that if I take that path, then I am a coward for not choosing to stay on and “fight” like the “warrior” I’m supposed to be. I hate the rhetoric of war that pervades the cancer world, even as someone who once used it liberally. With fighting and war, there is a winner and a loser. Will you judge me then as a loser when I die because I succumbed to my disease? Will you judge me as a loser if I simply choose to stop treatment and to stop actively “fighting”? If you do, so be it.

It seems that I have come to the end of the road of tolerable treatment options and therefore there is a particular urgency in my coming to an answer to this question. I had scans on Monday and received my results yesterday. While my lungs are overall stable (one tumor’s notable shrinkage and another tumor’s growth with all other lung tumors remaining stable), the abdominal and pelvic MRI showed a enlarged peritoneal lymph node as well as a questionable spot around my uterus. The latter may be post-surgical “stuff” but it is impossible for us to know without another surgery. In addition, my CEA continues to rise. Dr. AC is not a fan of the current treatment (Irinotecan and Avastin). Who could blame him? This recycling of prior drugs was really a last ditch effort by me to try the last likely effective treatment available in the hope that their prior use had not as yet de-sensitized my cancer cells to them. Dr. AC believes that continuing with the Irinotecan and Avastin may make us feel good because we are feeling like we are doing “something”, but he doesn’t think that we would actually be doing anything beneficial, at least for not much longer.  There remains two FDA-approved drugs for treating colorectal cancer, one of which is so toxic I swore I would never take it and the other of which is highly unimpressive and tantamount to a waste of time.

He then asked me if I wanted to do something “crazy.” I had to hear what his “crazy” idea was, of course. Because he doesn’t believe that single agent immunotherapy will work with the specifics of my tumor biology (for reasons that are not entirely clear to me), he thinks we need to attempt combined immunotherapy and the drugs he has in mind and has access to are Ipilimumab (brand name: Yervoy) and Nivolumab (brand name: Optivo). Both are FDA-approved drugs used to successfully treat metastatic melanoma. Each drug forces two different receptors on cells that constitute part of our immune system to identify cancer cells as unwanted and thereby allowing the immune system to kill those cells. Dr. AC would also throw in a little radiation therapy (probably directed at that peritoneal lymph node) to trigger an initial immune response and jump start the immune system. This would be done “off-trial”, meaning outside of a clinical trial.

Sounds exciting, huh? Crazy always sounds exciting, but then there are certain complications. First, there’s the matter of getting the drugs for off-label use since the FDA hasn’t approved them for colorectal cancer. Dr. AC seems to have some connections with the pharmaceutical companies though so I think he would succeed, although he himself said it wouldn’t be easy. More concerning to me is that the use of both drugs – known as anti-PD1 and anti-CTL-4 inhibitors, respectively – would preclude me from future clinical trials that include the use of these or any other anti-PD1 and anti-CTL-4 inhibitors. Of course, this is only a concern if I even want to participate in clinical trials.

Last but not least, are clinical trials. Dr. AC said he would probably opt for a clinical trial over “crazy”. He wants whatever trial I do to be one with combination immunotherapy. He says he will talk to his contacts at Memorial Sloan Kettering, Columbia Presbyterian and Johns Hopkins, all places that have strong immunotherapy departments. If trials is the direction I want to go in, I will also have to do the research myself. It’s a daunting task.

Most of the trials available are Phase I trials, trials where the experimental drug is being tested for safety, not effectiveness. That’s a frightening thought isn’t it. I’ve heard people say that the odds of a clinical trial working are 5%. I think it’s much less than that, more like 0.1%.

Josh believes it’s worth “fighting” based on that 0.1%. I don’t agree. Why should I allow myself to be treated like a lab rat, poked and prodded, monitored, scrutinized, suffering who-the-hell-knows what unknown side effects? Why should I diminish the quality of whatever time I have left with my children when the chance of success is so small? Why bother when the end game is the same?

I’m tired. I’m so very, very tired, so tired that I don’t want to do anything at all, not “crazy” stuff or clinical trials. For those of you who don’t live with metastatic cancer who haven’t undergone all the surgeries and treatments, can you possibly understand the depth of my fatigue, physical, emotional and spiritual? I don’t think so. It’s the kind of exhaustion that tests not just any courage I have but also the tremendous love I have for my husband and children.

I’m tired of feeling the strain of living as normal a life as possible under the constant threat of death. Of combating the jealousy and anger upon seeing the grandmother who has the privilege of taking her grandson to school and the envy upon hearing another mother’s carefree laughter with her friends. Of feeling the hatred of the woman who Josh will marry after I am gone, the slut who will live in the home that I designed and have the honor of raising my beautiful children, the bitch who will hang her dresses in my closet the cunt who will steal the life that should have been mine. Of feeling the sadness at the thought of Mia sitting in her weekly violin lesson without me there for her to glance at once in a while for reassurance and encouragement. Of worrying and planning and more worrying and more planning. This is the text of an email that I wrote to Mia’s violin teacher last Friday, a manifestation of my sadness, worry and planning.

***

Hi A,

I think I told you at some point that I have metastatic cancer, incurable and likely terminal. When you told us this week about your violin teacher and how she got you through the first 7 years of your violin life before she died of cancer, it was obvious how much she meant to you and no doubt how much you meant to her. Anyhow, it got me thinking so just bear with me as you read this.

While everyone tells me I need to be positive, I’m a realist and a planner. You are so young so probably some of what I say won’t resonate with you yet, but I will do my best to explain. What makes me the saddest about dying is the thought of Mia learning during her lessons and me not sitting right next to her, watching her. The thought of her performing on a bigger stage and me not being there in the front row to cheer her on breaks my heart into a million little pieces. The image of her practicing by herself without me there to push and yell and demand and hug and teach (not the violin but about life) both worries and saddens me. Who will and can replace me? Who can nurture her musically and otherwise as I can? The answer is no one. No one can possibly love my children as much as I do, not even their father. So the best thing I can do is to line up as many people as I can to be there for them in the different aspects of their lives. That’s what I want to talk to you about.

While Mia’s father is incredibly musically talented, he works a lot and I don’t see him fulfilling the music role left empty by my death. What I’m asking of you is for you –as much as you are able — to take Mia under your wing, to look out for her musically, to guide her and push her when she needs it, to advise her in getting into music programs and, if/when the time comes, finding a new teacher for her.

I know Mia has musical talent, how much I really don’t know. It doesn’t really matter to me how much talent she has. What matters is that she develop what talent she has. I don’t want it to go to waste. Plus, I think she really enjoys playing and likes to perform. She’s one of those people that keeps her feelings to herself which I don’t think is a healthy coping mechanism. It is my hope that music becomes an emotional outlet for her, a way for her to deal with the grief from my loss and the other hardships will inevitably come into her life.

How much you want to and can help Mia is totally of course up to you. I will understand if you can’t do much at all beyond the weekly lessons. But if you want to be more involved in her life and get to know us better, the invitation is always out there. We literally live around the corner from the school. Mia likes you and obviously you are good at relating to little girls.

So thanks for having taught Mia as much as you have (and me). You’ve no idea but the lessons are a highlight of my week. I always wanted a musical education but my parents were too poor to give me one. And thanks for reading all this and putting up with my emotional outburst.

***

And it is because of my jealousy and hate and worry and love that I have threatened Josh with murder from the grave if he were to ever favor future children over our children, whether monetarily or otherwise. I made him promise that he would not move out of this apartment that I have spent so much time, money and energy renovating for my children because the Slutty Second Wife demands so because she wants to banish all traces of me and force my children to forget me. A friend told me about a little boy who lost his mother to cancer at age 1; subsequently, his father remarried and now four years later, that boy calls this woman “Mom”. That story made me cringe and incited this hysteria.

And yet, even as I threaten murder and worry about my children calling another woman “Mom”, I also tell Josh that I want him to find love and happiness again. I tell him it’s okay to wonder about who will marry next, that it’s totally natural to think about a life after me. I tell the children that after I’m gone, Daddy will marry someone else and that it’s okay for them to love her, but just not more than they love me. I don’t want them to feel guilt for loving another woman who acts like their mother and yet I’m terrified of being replaced and, worse yet, forgotten. They deserve a mother who is healthy, a mother who can chase after them, a mother who isn’t constantly bombarded by thoughts of death.

As I write all this, I know how unhinged and schizophrenic I sound. I’m crazy. Josh would tell you I was crazy to begin with and cancer has made me crazier. And poor Josh has to put up with my hysterics, my anger, my sadness, my tears, my darkness. Josh is tired too. He’s tired of living under the black cloud. And out of love for him, I want to die sooner rather than later. I want to set him and the children free. I want him to have a normal, happy life again. And no doubt, his family wants the same for him. I am a burden. I don’t want to be an embarrassment to him at family gatherings, me with my ravaged skin and body – oh poor Josh, they must all think. It will be a lot better for him when my presence is gone and he has someone else with whom to share the rest of his life, someone who will help him heal and forget the pain.

So now you understand with what I am wrestling. Is it more courageous to continue or stop? Is it more loving to leave or stay?  I still don’t know.

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24 Comments (+add yours?)

  1. Cristina
    Jun 15, 2016 @ 15:49:17

    I am almost in the same boat. Life is easier for me because my daughter is an adult. Having small children while being in our situation must be unbearable. I am also pragmatic and have decided that this is my last treatment. I am on Ironeticam and ebutrix. My last CEA was at 88 and my tumors in my lungs are growing. I get a scan in two weeks. If it’s not working I will stop and live without treatment. I believe we need to make our own decisions. Everyone will judge but only you can decide. We have lived with this disease for a long time, have gone through surgeries, chemos and psychological hell. Who gives a hoot what others will think. Julie you are not a burden and I am sure Josh and the girls don’t feel that way.
    Although just a facebook friend, I support you and love your honesty.
    I hope you find your peace.
    Cristina
    P.S. No one will ever replace you. You are an original. 💙

    Reply

  2. Nilene Evans
    Jun 15, 2016 @ 16:04:29

    You may never know whether the choice you make is the right one. But the people who love you and care about you (even I, who have never met you) support you in your choice. You are leaving a beautiful written legacy of love and thoughtfulness and deep caring for your family. May you find the peace you seek in this journey. Nilene

    Reply

  3. Courtney
    Jun 15, 2016 @ 16:06:25

    Julie,
    I say you fight. My husband is in a similar situation to you with stage 4 colon, mets to liver and peritoneal wall. He’s been at this since 10/2013. He too is on irinotican and avast in and after his next scan in July it is likely he will need to start an immune therapy trial at Sloan. We are optimistic and some might say delusional, but it is out of our hands. I choose to believe that he will be the small percentage that lives. I choose to live this way bc the alternative is too sad. He is enjoying his life and his 3 children and plans on the best possible outcome. He just had his 68th round of chemo yesterday … He is tired and we are scared believe me. But the way I look at it is I have 2 choices as his wife….believe that there is hope or believe he is doomed. I’ve already tried the doomed choice…he has too and it sucks. It colors every aspect of my life. It was horrible. About a month ago I decided to be hopeful bc he is alive now and as much as I hate it when people say it we are all going to die one day. So I don’t want to live every day thinking about when it will be over. We will deal with that when/if that happens. I am choosing to trust his dr who is optimistic and I’m choosing to get used to the fact that we have no control over this pretty much. I’m giving it up and it feels good. My kids ages 12,10 and 8 all know about the cancer and treatments but it is not front and center…it is only a piece. It cannot define us. So I say to you, continue with treatment!! You never know what can happen. !! I so enjoy reading your blog. You are a beautiful writer and an amazing mother. As the other half of a cancer couple, I want to root for you and cheer you on. Choose the path of hope. I wish you all the best!! Pls keep me posted on your dr decision. We r right behind you. Xo Courtney

    Reply

  4. Lisa N
    Jun 15, 2016 @ 16:08:44

    Julie, I’m sending you virtual love right now (in the form of prayers, vibes, whatever resonates). I am so sorry you are going through this. You are a remarkable human being. Thank you for sharing with all of us. Whatever you decide and whenever you decide it, it will be right.

    Reply

  5. Ann
    Jun 15, 2016 @ 16:09:01

    Julie, I think you are very brave. Nobody would challenge you if you decided to kill yourself working so hard to live just one more day. But it takes a brave and noble person to accept her situation (not defeat, never defeat) and to manage to find a level of peace within the pain and insanity of it all. I don’t know why people think they have a right to have an opinion about your situation (um, like I do) and then force it on you. You know yourself. You know Josh and the girls. You know what is best for your situation. Because it’s yours.

    I don’t know how your darling girls could ever forget you; you are strong and brave and generous. Thank you for sharing your journey with us.

    Ann

    Reply

  6. Barbara Gettelman
    Jun 15, 2016 @ 16:19:49

    My heart breaks. I just wrote a long reply but cannot send it. As one of the “others” I want to give considered attention to your brutally honest thoughts. The only thing I wish to say right now is that I cannot understand how, under any circumstances, you would be remembered as anything less that heroic. You have been on a long, brutal journey. Your considerations now should be buoyed by your prior strength and courage Not for a second should you worry about your legacy. It is sealed in your actions, in your tears, in your very substance.

    Reply

  7. susanfeeney
    Jun 15, 2016 @ 16:47:44

    Hi Julie. I think my it would help for you to remember we all live with the constant threat of death. It’s just that those who don’t have a disease like cancer, get to live in the fantasy world (where I once resided)-that life as we know it will go on forever. Recently, a 25 year old guy, a friend of my daughters, expressed his sincere sympathy and sadness about my illness. He gave me a big hug and looked at me with such compassion. Within a month, he was dead. The point is we are all incurable. We are all going to die. How and when is still up in the air, Julie. Stop thinking about death. Think of life and live it. That’s all any of us can do.

    Reply

  8. Cindy robinson
    Jun 15, 2016 @ 17:42:59

    Who says that dying is losing? We are all just here temporarily, never knowing when are time is up. You dear just take that a bit more seriously due to your circumstances. You are already a winner as you have learned to appreciate things that most people take for granted because they don’t think about dying.

    Reply

  9. MaryEllen
    Jun 15, 2016 @ 17:52:47

    I remember sitting at the CCA Conference in Miami a few years ago when Katherine gathered some her close friends together and told us that she had something to share with us… First, she made it very clear that there was not going to be any discussion regarding what she was about to share, as she and her husband had spent a great deal of time coming to their decision… After her long battle, she had decided to stop treatment. She asked us to not look at it as losing or giving up, rather to see it as another victory, because she was choosing to do this her way… She was choosing to trade a large amount of personal and physical exhausted pain and struggling quantity for some quality in whatever time she may have left.
    There was a quiet pause after she shared her news… we sat looking at her (all cancer survivors or warriors at different stages of healing or dealing), truly seeing her determination and her relief that her decision had been made and shared….
    No matter if we agreed or disagreed and no one voiced their opinion as we gave her all the love and support we could provide as we too embraced HER choice…
    Follow your heart Julie… And in this, choose to do it your way!

    Reply

  10. Anne Anderson
    Jun 15, 2016 @ 19:02:15

    Julie,

    Have you checked out MDAnderson in Houston?

    You will never be a burden! You will always be an incredibly loving and intelligent Mother and wife.

    Reply

  11. Kris Bruneau
    Jun 15, 2016 @ 22:23:45

    It is such a difficult and personal decision. I, too, hate the warrior mentality in cancer circles, for just the reason you describe here. I have seen kids hold on in pain and suffering, because they don’t want to let their families down by giving up. It’s not giving up, it’s letting go, choosing what is more important to that person, quantity or quality of life. I don’t think there’s a universal right answer to that. You know yourself and your family best. Can you and they best cope with this by knowing you did everything you possibly could? Or is it better for you, the girls, and Josh to have more of your time without side effects, without time at the infusion center? Either way you get to make a choice that is brave. Neither is cowardly. Just facing this head on and asking all this of yourself is brave and strong. I have so much respect for you.

    As for Mia and her music, just an idea which you can take or leave, but someday maybe she could bring a photo of you to lessons and recitals, to help her feel like you are still part of her music and remind her of how proud you are of her talent and hard work.

    Reply

  12. Jeanine
    Jun 16, 2016 @ 11:59:55

    Julie, I cried reading this post. I hope you choose to try the next trial. I pray for your cure. Don’t give up. You are and never will be a burden to you family. You see it that way but they do not. You are a selfless being. Worried about everyone else. Truth is – they all need you. Stay the course. Much love…Jeanine

    Reply

  13. Josette Andrews
    Jun 16, 2016 @ 17:51:21

    Julie, only YOU can decide as you are going to be the one enduring it — whatever the choice. I recently lost my father and it was so hard for him to hear that it was time for hospice. Since he couldn’t eat and could barely drink just tiny sips of water he wanted his TPN to continue. He had already been through sooo much and so many surgeries and recoveries and chemo and you name it. The Hospice wouldn’t allow TPN, so he refused hospice. Several more ER visits, hospital stays and more scoldings from docs telling him that the TPN was making his situation worse (apparently a dry death is better) and would continue to make his last days even worse, they told him they would discontinue the TPN. He was adamant and said I can take whatever is coming and when I can’t — I will say, but for right now I want the TPN. I pay good money for the top tier insurance that I have and here you are telling me that there is nothing more you can do but even though I can’t eat or drink you want me to just go home with nothing? It was heartbreaking as he did not have a lot of pain and he was still able to get around. I think at this point we even discussed moving him to a right to die state if that is what he wanted. My sister begged him to go on hospice and several of them came to visit with him to discuss their services on several occasions. However he stood his ground and the doc came back and said, “Ok, we are tired of arguing with you–we are going to send you home with TPN against our best judgment since you are refusing hospice and I think that if we don’t give you your way you are going to be very stressed out and we don’t want your end days to be stressful.” Well let me tell you he knew what he was talking about because he had his TPN and did very well for awhile. At this point we were also able to get a DNR and discuss his last wishes. When his time did come, and yes he did have excess fluid…etc. he looked absolutely amazing and peaceful and not sick at all for his wake and funeral. He looked healthy and just as though he were peacefully sleeping. This is what HE wanted. He didn’t want to look like an emaciated skeleton, wrought with cancer–all the while we were all telling him that we didn’t want him to suffer and to go on hospice and just go peacefully. He did it HIS way and spent more days with his family though they may have not have been of the best quality and under the best circumstances, it was what HE wanted. I hate this disease and hate that we even have to have such discussions. It really is such a delicate and personal choice and you will know what the right decision is for you when it is time. After all of this and my chances of also getting stomach cancer, after all of the research I did for him and taking him to Mayo Clinic and MD Anderson, I am not even so sure I would undergo even the chemo treatments. It’s not giving up. It’s life. My life. Your life. It’s a personal choice. Either way, your daughters are going to be so blessed to be able to go back and read your most personal heartfelt writings that they will know that you did everything you could and then some. There will be no judgment Julie, only love! ❤

    Reply

  14. Will
    Jun 16, 2016 @ 19:55:22

    Julie, I just wish to share with you that my hubby has been rejecting chemo after his debunking surgery of his stage 4 appendix cancer. First CT showed 2 hypodense (or cyst) right after 3mths with rising CEA. He is well and feeling great. Myself and his family all wanted him to have quality of life instead of prolonged life struggling with drugs. Yes I wanted him to stay as long as possible for my 5 yrs old and 1 yr old son, but I wanted even more is his wellness. Yes, he won’t be able to get another surgery and he might got defeated just like what happened 6mths ago. We can’t bear to see him suffer. So we are still actively trying for other approach. I think you should find other way out. You might have some enlightenment. Do not give up! Please stay strong…

    Reply

  15. Adiatasha
    Jun 16, 2016 @ 20:45:06

    I’m sobbing on a plane. I don’t know you but I hurt for you.

    Reply

  16. Joan B
    Jun 16, 2016 @ 21:29:19

    I I know one person who chose not to pursue further treatments when her breast cancer spread to her brain. She felt that it was more important to her to enjoy what life she had left, rather than suffer for a slightly longer time. I don’t think she regretted the decision. She lived a year, and 11.5 months were good ones.

    On the other hand, I know another woman who has been stage 4 breast cancer for years. It is amazing. Her quality of life is mediocre most of the time but awful some of the time. Her kids are 10 and 14 and she has no doubts that continuing treatment is the best thing. She has lived like this for so long that at times she does want to walk away from treatment, but isn’t ready to do so. Her faith that she is doing the right thing for her and her family is strong.

    There is no right here. Neither is braver than the other. Just trying to make sense of the unknowable.

    I hope you are at peace with your choice, if such a thing is possible.

    Reply

  17. Mirna
    Jun 17, 2016 @ 13:03:32

    hi julie, i am crying as i am reading this piece. there is no right or wrong. you are the bravest person i know. i still fondly think of our time working together. sending you and your family lots of love. you are in my thoughts.

    Reply

  18. awreed
    Jun 22, 2016 @ 02:37:02

    Hi Julie, I love your writing and to say I relate is an understatement. Your blog is so helpful to so many, thank you!! Living in this hell we call stage IV metastatic terminal colon cancer is such a lonely mind fuck existence… It’s a bit of relief to “connect” with you through your honest, raw and thought provoking blog entries. Thank you.

    Reply

  19. tyler
    Jun 23, 2016 @ 14:34:39

    Dear Julie,

    Thank you for sharing your courage and teaching courage. Your words since you have been diagnosed have been a beacon, a sounding board for personal reflection and guidance to remind us all to live with tenacity. You have been courageous since the day you were born. In this post you shared us with pain of loosing a life with your daughters and of course Josh. You ended the post by referring to yourself as an embarrassment. This has worried me more than anything else you have written about in your blog. When you were young and blind and then nearly blind and you were held back by your family, I think that you may have been viewed as an embarrassment. You have spent your entire incredible life teaching those who have come into contact with you that you are the opposite. You are cherished. Cherished by the herbalist who met you in Vietnam when you were an infant and sent you back home with your parents. You were cherished by the admissions office at Williams College and again at Harvard Law. You have been most cherished by Josh and your children. You are cherished.

    Reply

  20. The Astonishing FMan
    Jun 26, 2016 @ 01:37:13

    Words. Words. Words.

    What good are they?

    Useless thought they are, I love them anyway, as if they were my own children, or as if they were orphans depending upon my mercy. I can’t turn them away. If they are honest, I can’t turn them away. I don’t care if they are worthless words, as long as they are honest. They can be cruel words, harsh, demanding, not beautiful, hurtful to endure, as long as they are honest.

    And when they are calming, beautiful, consoling, stirring, enlivening, enlightening, philosophizing, this is bliss.

    That not everyone loves words is difficult for me to accept. For a long time, I could not help thinking that people who do not love words are less than fully human, that their psychic development had been stunted. Reason and experience have taught me that’s not true. Some good people don’t love words. Even some people whom I love don’t love words.

    Yet I must look upon non-lovers of words warily, because I think they look back at me warily, or worse, contemptuously, and think me frivolous. I suspect the non-lovers of words think that words are merely tools, implements one uses in the performance of certain tasks, that the delight of words themselves, a delight in words, is foolishness, wasted effort, that unnecessary words at best an entertainment to provide a respite from the serious business of life. But to me, words are necessary to “the serious business of life,” and not only necessary, but something better and greater than necessary. Wasted words are the things that make the “serious business of life” worthwhile, allow meaning, sense, and reason to come to light from the apparent chaos that is “the serious business of life,” They are most valuable precisely because they are unnecessary, most valuable precisely because wasted words, wasted music, wasted art, allow us to transcend the tyrannical cruelty of physical animal necessity that otherwise dictates so much of our living and our dying.

    Is it possible that prayer is the highest form of wasted words?

    What could be more wasteful (and glorifying) than a prayer of gratitude that wants nothing more than the opportunity (and strength) to be grateful? “Dear God, please let me be grateful. Dear God, thank you for letting me be grateful.”

    Yes, I look upon the non-lovers of words warily. And they must look upon me warily. I and the non-lover of words could go to war at any moment, because we are in some incurable way foreign to each other, brought up and acculturated in alien lands.

    In this beautiful war of words, wasted words, Julie, I am a common foot soldier. You are my captain.

    Reply

  21. Lisa
    Jul 07, 2016 @ 04:34:21

    I’m sometimes confused by the cancer terminology that you either “fight” or “give up”, as if it were really up to the cancer patient. At some point, when the meds aren’t really working, they aren’t working. So logically my mom stopped taking them. That was that. It wasn’t a decision to give up. She took them while they were assisting in some way (either inhibiting the cancer or the symptoms) and when that was not the case, she stopped taking them. I don’t really get this oft talked about choice.

    Reply

  22. Kelly
    Jul 10, 2016 @ 04:13:47

    Hi, I don’t know you, I was trying to find Leta’s Blog, but somehow I got to your blog. Thank you Thank you for all your words, saying everything my mind flashes for a nanosecond before racing to another fleeting thought.
    Thank you for gathering up the people that will help your loved ones move forward & become the great violinist they are destined to be. Thank you for giving me permission, or better said, a reminder that I can be crazy & make uncomfortable request, thank you for your voice, , the light within me recognizes & honors the light within you.

    Reply

  23. M. Lane-George
    Jul 14, 2016 @ 12:18:01

    I cannot imagine the fear and the pain though my husband and I are going through nearly the same thing. I will be thinking of you and your family in the days to come.

    Reply

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