From Darkness To Strength

[Today is my 39th birthday and I’ve spent it doing what I love most (aside from spending time with my family).  I’ve spent it writing, writing this blog post that I hope you will find ultimately uplifting.  Thank you for all the incredible messages of support.  I’ve not been able to respond to most of those messages but I will try to get back to everyone.  Thank you in particular for all the offers of help.  I will let you know when I need to accept those offers. 

As a quick medical update, I went into the infusion center two weeks ago, fully expecting to start Folfox, but Dr. A.C. had spoken to Dr. Marshall, and Dr. Marshall advised against doing Folfox and instead proposed a gentler and easier regimen of Xeloda (the oral version of 5-FU) and Avastin – 1000 mg of Xeloda twice a day for five days on and then two days off and an Avastin infusion every 3 weeks.  Dr. Marshall likes this regimen a lot because even though it tends to just maintain the disease rather than shrink tumors, it keeps patients relatively healthy for a long time and therefore good candidates for surgery and clinical trials.  Dr. Marshall wants me to look for immunotherapy clinical trials—the hunt for immunotherapy clinical trials will be a joint effort between me and Dr. A.C.  He felt that I should save the Folfox for when I really need it because it is a pretty harsh treatment.  I’ve heard from others that Dr. Kemeny at Sloan likes Xeloda and Irinotican for lung mets while Dr. Lin at Seattle Cancer Center likes Folfiri .  Dr. Marshall, Dr. Kemeny and Dr. Lin are all famous for their treatment of colon cancer.  It’s very difficult to deal with so many opinions, although ultimately it’s just evidence of how no one really understands this disease.  My oncologist is not a specialist in colon cancer.  He’s more of a generalist in solid tumors and is most famous for lung cancer.  So I’ve wondered whether I should switch to Sloan.  At this point, I’m unwilling.  I may try to get a formal second opinion from Dr. Kemeny at Sloan but I really like the quality of care I’m receiving at NYU.  I can get a hold of my oncologist easily.  I email him and call him on his cell phone.  He’s incredibly responsive to my concerns.  From what I’ve heard from others, that’s simply not the norm at Sloan.  And most importantly, Dr. A.C. and my other doctors at NYU are invested in me.  That counts for a lot in my opinion. 

I got the Avastin infusion 2 weeks ago (which takes only 30 minutes).  Because of the holidays and some incompetence at the NYU Cancer Center, I did not receive my Xeloda pills until last Friday.  Had I been on my game and in a good emotional state, I would not have allowed such a delay.  I was late in dealing with the incompetence.  In fact, it wasn’t until New Year’s Eve day that I sent a nasty email to my oncologist telling him that the delay and incompetence of certain members of the NYU staff was entirely unacceptable.  The mail-order pharmacy called me a couple hours later and told me the Xeloda would be shipped to me and arrive on the next business day.  I started taking the Xeloda Friday night.  Thus far, there’s just been a little fatigue.  I had been having terrible headaches before I started the Xeloda and during the weekend.  I decided that it was either brain tumors, a cold that the girls had given me, the stress of getting used to living with an incurable cancer diagnosis or anticipatory side effects.  The headaches stopped yesterday.

The day I got the horrible news, I learned of a laser surgery performed in Germany and London to deal with up to 100 lung mets.  In fact, I know of people who have gone to Germany to have the surgery done.  Although the surgery has been performed for 10 years, it is not available in the United States because the FDA has not approved the equipment.  I asked my oncologist what he thought of the surgery and what the lung tumor board thinks.  He and they think my tumors are too small for the surgery, that a surgeon would not be able to see the tumors during the surgery.  Dr. A.C. does have a patient he is sending to Germany to have it done but he said that in her case, the surgeon would be able to feel her tumors.  I might get a second opinion about this.  The surgery costs 11,000 Euros per lung.  Yikes! 

Now, on to the point of this post.  Many have been asking how I’ve been doing.  This post answers that question.]

I vowed when I started this blog that I would endeavor to be brutally honest about who I am and what it is for me to battle cancer, that I would strive against my very human egoist tendencies to prop up some persona of myself as perpetually inspiring, strong or wise.  Why was this so important to me?  In part, I made that promise to myself because if this blog were to become the principal means by which my children would come to know my innermost thoughts and feelings after my death, I wanted them to see my real self, a self that, in addition to experiencing many moments of joy, gratitude and insight, was often tormented by fear, anger, hurt, despair and darkness.  In part, I also made that promise because I disliked tremendously those bloggers who always presented in the face of a life threatening illness images of pumped fists and unending positivity and determination.  To me, such portrayals were disingenuous, an insult to the intelligence of readers and, above all, disorienting and potentially harmful for those like myself who were newly diagnosed and felt more darkness than light.  I wanted to detail and explore that darkness, to let others out there who I knew experienced a similar desolate and lonely darkness know that they were and are not alone.  There is a natural intuitive fear of darkness; people who are gripped by it are ashamed to speak of it, while those who are free of it for however long wish to run from it as if it were a contagious plague.  If the cost of my brutal honesty about my darkness is a highly unflattering picture of me that repels, so be it.

I have known a nightmarish darkness during the past 2.5 weeks a thousand times worse than anything I’ve ever experienced.  I managed to get through Christmas and then the full force of the darkness hit me the day after Christmas.  It left me broken and crumpled on the ground, both literally and figuratively, my rage-filled screams ringing in its wake and a husband and children utterly shocked at the madness they were witnessing and had never thought possible in this woman who was supposed to be their steadfast wife and mother.  Yes, Josh has seen me angry and despairing before, but never like this, for this frightened him; this made him afraid for his own and his children’s safety because I was like a deranged animal devoid of reason, hope and light.  I yelled and hurled things, not at Josh or the children, but at the heartless gods who would do this to me, and in the absence of those gods, at the painfully unjust cruelty that is an inherent part of the human existence.  Why me? I demanded of those nameless gods.  Hadn’t I already borne my share of trials and tribulations?  Hadn’t I already known enough suffering?  Hadn’t I lived a good and moral life?  The absence of any divine answer arising from the chaos of my thoughts made me even more crazed.

Through heaving sobs, I begged Josh to let me go, to let me leave him and our girls forever for all I wanted to do was flee, get on an airplane bound for unknown parts where I could die alone with a setting sun.  In the state I was in, I was a completely unfit mother and wife, an unfit human being for that matter.  I tried to convince Josh that my leaving would be for the best, that he is still a young, handsome man with a successful career and he would be able to find someone to replace me easily, that any woman would love our girls, that the girls are so young they would grow to love their new mother easily enough.  I wanted not to fight, but to flee to a place where I could die.  I told Josh I didn’t want to live like this, with this diseased body that had failed me one time too many, with the specter of death looming ever closer, that this was no longer a life worth living, that whatever good that would come from now on, whatever laughter, whatever joy would be poisoned by the cancer, and I didn’t want a life poisoned by cancer.  I wanted to start over.  I wanted to find escape and rebirth in death.

Even as I made these pleas, I grew angry at the image of this other woman who would have the time and life I should have had with Josh and my girls.  I hate her, this woman I don’t even know.  I hate her now and I will hate her for eternity.  And yet, I also want her, need her, to come into their lives, to take care of my husband and children.  I need her to love them as well if not better than I do, for as long as Josh and the girls are okay, then I know I will be okay.  As much as I hate her for myself, I love my family more than I love myself and I need them to be okay.  I need them to mourn me, to remember me for a time, and then I need them to move on and live their lives with joy and abandon.  This is what I want for them above all else.

[I must pause here to leave a message to any woman who comes into my family’s life, including the second wife – I like to call her the Slutty Second Wife.  I’ve stated in this blog once before which I reiterate now, I vow that if any woman does wrong by Josh and my children, I will hurt her.  I will come back as a poltergeist and hurl books and vases and anything heavy and painful at her head.  This I promise.]

In sleep, I found a reprieve from my nightmare for in sleep I did and do not have cancer.  In sleep, I live the life I wanted.  I’ve half-convinced myself that death will be like my dreams.  In death, my soul will travel to a different dimension where I will get to live my ideal.  There, I will no longer be plagued by the limitations and hurts of this body, but I will have the compassion and wisdom gained from the painful experiences of this life.  There, I will know what it is like to see the world perfectly, to drive a car, fly a plane, play tennis.  I will get to live a full and complete life with Josh, my great love of many lifetimes.  With him, I will travel more of the world and have our two girls and more children.  I will cook grand feasts for them and fill the house with the smell of freshly baked breads.  Our home will ring with the sounds of innocuous yelling and mundane dramas and warm laughter.  And there will be so much love, always so much love.

Every time I woke from sleep, the first thought I had was that I had incurable cancer with a prognosis of several years (and probably less given the seeming aggressiveness of the cancer), and I wanted to scream at the loss of my dreams in my waking hours.  Waking was like mourning the loss of my dreams again and again and again.  Torture.  Agony. Crushing.  It’s enough to make you want to die so you can go live the life that you’ve half-convinced yourself awaits.

Josh wouldn’t allow me to lie broken on the ground.  He yanked me up by the arms, screaming right back at me, “I will not let you give up.  Do you hear me?  You will not give up!”  In the next breath, he was begging me to fight for him and the children, if not for myself.

I honestly think Josh and the girls would be better off starting over sooner rather than later.  No one has been able to convince me otherwise.  I don’t want to be a burden.  I don’t want my family to see me die a slow painful death.  I don’t want them to live through my emotional roller coaster.  In no way am I minimizing the love Josh feels for me.  It is very real and deep, but I also know that time heals all wounds, that he is capable of loving someone else, that he should and will need to love someone else.  And perhaps, that love will be equally profound, if not more so.  He is a good and wonderful man and I have been inordinately lucky to have him.  Even with respect to the children, I know that they are resilient, that they will withstand my loss and thrive regardless.  They are after all my children and I like to think the best of me flows through their veins.  I know that so many will step in to help Josh raise them and that so many will tell them about their mother.  I know they will be surrounded by love.

So no, if I choose to keep fighting, it won’t be because I think Josh and the girls really need me or that somehow more time with me will make much of a positive difference in their ultimate destinies.  Nor will I fight based on some delusional hope that I will somehow still miraculous beat this or that I will have a lot more time than I expect – I have always had a tumultuous relationship with the concept of hope and I still do.  I’m not a believer.  I will leave the hope stuff to all of you.

Even so, I do choose to keep fighting.  It’s taken me nearly two weeks to make that affirmative choice.   It’s taken me nearly two weeks to recover from the lows of that day after Christmas, to pull myself out of that darkness.  It happened with the help of Josh and my girls, my beloved, long-time therapist and the words of my even more beloved sister, Lyna, and best friend, Sue.  They helped me to see important truths about me and how I want my life and legacy to be viewed now and after I am gone.

When I did poorly on a test in high school – and by poorly I mean by my nerdy standards a 92 instead of a 95 or a 97 instead of 100 – I would come home tearful, convinced that this unacceptable grade on a test was the greatest tragedy of my young life, and, indeed, it was.  My parents were not the typical crazy Asian American parents who put pressure on us.  Yes, my dad would pay us for every A we got on our report cards, but there were never any demands or threats.  In response to my crying, my mother would ask in her broken English, “Did you do the be’t you can?”  Of course, I had.  “Then, that’ all you can do,” she would tell me

It was such simplistic advice and yet it was so true.  Your best effort is all you can ask of yourself – no more and no less.  And once, you’ve done that, there can be no regrets.  I will continue to fight this disease – not with the same gung-ho attitude I once had at the beginning – but I will continue to fight it with an even more nuanced, deeper and realistic understanding of its deadliness.  I am an overachiever, used to doing my best at everything.  A lot of times my best wasn’t good enough to get the stellar grades.  Similarly, my best will not be enough to beat cancer, but even as I lie dying someday not that far into the future, to know that I tried my best to gain more time in this life and to live as well as possible in the face of this disease and therefore have no regrets, that knowledge will be enough for me.  It will be enough to bring peace to my soul for I would have fought cancer in a manner consistent with how I lived the rest of my life, that cancer, though it may have taken so much from me, did not rob me of that vital part of my spirit.  It will bring me peace because by the example of the totality of my life and how I chose to fight always, even in the face of such a formidable foe, always doing the best I could, I will teach my girls one of the most important lessons there can be.  I want them to understand the importance of always doing the best they can in whatever endeavor, a lesson that their maternal grandmother taught me and one that I now must teach them.

As a mother, I don’t get to just walk away from my children however much I may want to escape further physical and emotional pain or for any other selfish reasons.  I made the choice to be a mother five years ago and with that choice came sacrosanct commitments, the most important among them being to give my children the tools to live their lives, tools that go well beyond feeding, bathing and clothing them.  Continuing to battle this disease in the face of its likely outcome is about keeping the most sacred promises I made to them the day I held their little fragile bodies in my arms for the first time.

I am also making the choice to keep fighting because of all of you.  I received many wonderful messages of support and love.  Thank you so very much.  All of them lifted my spirits.  But one comment left me thinking a lot.  It was from Domitilla from Italy, someone I’ve never met in person.  She wrote:

I still believe you can beat the beast. You are a fighter, dear. You got the best reasons in the world to keep fighting. You got a loving family – husband and girls. Your parents and siblings. They all love you deeply. And then you got us, the blog people. We love you deeply, Julie, as well. Because your fight is ours. Don’t give up, Julie dear, please don’t give up. You are not fighting for you alone, you are fighting for us as well.

The idea that somehow my fight is also yours, the notion that I must continue to fight for you – the sentiments were so incredibly beautiful to me and somehow feeling like you all need me to keep fighting gives me the will to fight.  Indeed, the idea that you need me to keep fighting is in some ways more inspiring than the idea of fighting for my own family.  Domitilla’s comment made me realize that I am, just as each of you are, a vital part of the fabric of mankind.  It is as John Donne said in his poem, No Man Is An Island, “any man’s death diminishes me because I am involved in mankind.”  Yes, I suppose that my death will diminish you, but I also understand now that my living and fighting makes you greater than you are.  Indeed, anyone who chooses to live and fight and show by their example the power of the human spirit that we all share and its determination to persevere against the brutalities of what life can bring strengthens us all with a sense of the tremendous potential and fortitude that lies within each of us, a potential that is only realized when truly tested.  So I fight for myself, for my family, and least of all, for you, my blog people, for the message that my war against cancer conveys to all of you, to all of humanity, about the incredible strength of which we are all capable.  And by that same token, I urge all of you who read this blog who face your own challenges that make you want to fall into the darkness, to fight too, because you too are part of the human skein, and your fight matters and gives me and others strength when we falter.

I received many messages reminding me of how brave and strong I am.  I’ve felt anything but brave and strong during the past few weeks.  Does a brave and strong person lie on the ground crying as her children look on in horror?  Does a brave person walk through the abyss of darkness and wallow in the shadows of despair?  No, those are not images of bravery and strength.  It is what she does afterwards though that matter.   A brave and strong person hugs her daughters after the fact and tells them stories about her childhood and, even though they’re too young to understand, she talks to them about what it means to get married one day and how important it is for them to love themselves first and foremost before thinking about loving someone else. A brave and strong person pulls herself out of the abyss with the help of those who have more strength, hope and faith than she and goes about the business of living even though she doesn’t necessarily want to.  A brave and strong person goes back to doing more research as she tries to figure out what to do next.  She does all this knowing that there will be another abyss and many more moments and hours and days of darkness before she succumbs to the ultimate inevitability.

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19 Comments (+add yours?)

  1. Maia
    Jan 06, 2015 @ 18:13:43

    Way to go, Julie, way to go.
    I like that you’re going with Dr Marshall advice, at this point -low dose metronomic chemotherapy. Just hang around, with good quality of life, waiting for immunotherapy to be mature: http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=49549 Go soft and slow, for the sure path.
    “”The soft overcomes the hard/ The slow overcomes the fast/” 🙂
    All my strong love to you and your family.

    Reply

  2. Chrissy Rice
    Jan 06, 2015 @ 19:54:08

    Love you Julie. Keep fighting for us all.

    Reply

  3. Chris S.
    Jan 06, 2015 @ 21:07:26

    Hi Julie. It sounds like you’ve come through quite a rough few weeks. I hope the lessons you’ve internalized will serve you well on this journey, or in this war (whichever paradigm you prefer). I’m glad you choose to stay engaged with friends, family, and life. That will teach your daughters more than anything else you could have chosen at this point. And you will have the opportunity to teach them much more about how to live in the coming year and more.

    And from what I’ve read on the Colon Club, few deaths from this are slow and painful. With modern hospice it is usually closer to a peaceful slipping away… just sayin’

    Chris S.

    Reply

  4. Barbara Gettelman
    Jan 06, 2015 @ 21:28:41

    Julie, I feel stronger tonight because of you. I have been fighting my own demons and sometimes giving in. They pale compared to yours but you have taught me that I can be old and brave and proud of it. You do and have always inspired me. Please do what you must to nourish your best self.

    Reply

  5. Cristina
    Jan 06, 2015 @ 21:55:20

    Thank you Julie.
    You are a most beautiful soul and a gifted writer. I wish you strength.
    I found peace and insight in Transformational Breathing. If there is a class near you I would highly recommend it. It is good for the body and soul.

    Reply

  6. awreed
    Jan 06, 2015 @ 22:06:07

    How lucky that you don’t have cancer in your dreams, I do in 95% of my dreams/nightmares.
    1 hour ago I learned that my mother, 82, has Metestatic stage IV small cell lung cancer. She lost her husband of 60 years, 4 years ago quickly to prostate cancer. 1 year later she’s been watching me deal with my battle with colon cancer which has spread to liver 4x, lungs, spine, peritoneum, gallbladder, spleen on maintanence chemo after experiencing your Christmas reality in October.
    Cancer sucks you are not alone in your thoughts/feelings/actions.

    Reply

  7. Kit Grady
    Jan 06, 2015 @ 22:11:27

    Yes, you really really are fighting for us all. You are in my prayers tonight and every night just as my husband is. He is on the adapt therapy now. I know more than I ever wanted to know about this horrible disease but wouldn’t trade our life together and I’m sure Josh would agree. Blessings

    Reply

  8. Katie
    Jan 06, 2015 @ 22:45:22

    Your #1 fan begs you to keep fighting, knowing it is a lot to ask.

    Reply

  9. June C.
    Jan 07, 2015 @ 01:13:47

    Julie, stay strong. You are simply amazing, and you are destined for greatness. I will continue to hold you close to my thoughts and prayers.

    Reply

  10. courtneytollison
    Jan 07, 2015 @ 01:28:32

    Your words, your will, your honesty and your depth are astounding and inspiring. Through this, you are offering such an incredible gift by sharing your gifts with us, and I am so deeply moved by it. Stay strong.

    Reply

  11. Domitilla
    Jan 07, 2015 @ 01:31:48

    Thank you, Julie. Thank you, dear. ❤️

    Reply

  12. Paul Edelstein
    Jan 07, 2015 @ 15:26:35

    Holy Crap you are tough!

    Reply

  13. Leta Withers
    Jan 07, 2015 @ 19:58:14

    Julie – thank you for putting into such eloquent words many of the thoughts and feelings that I have and I’m sure many of us share as well. Whether you feel like it or not, you ARE an incredible inspiration. Having dark days is human and I respect you very much for showing your true feelings and baring your soul. It is a fight for us all and I feel invested in the outcome of each person sharing their cancer story. I’m glad you feel it in you to keep fighting.

    Reply

  14. Lisa
    Jan 08, 2015 @ 09:42:49

    Julie this honesty is what makes you brave. Just this honesty. Never mind the crying and fear and tantrums- the honesty about that fear is what really counts. You will teach your children about death as my mom taught me and I will teach my children. They need to be a part of that for their own healing. I so admire you. I am in awe of your strength borne of your honesty.

    Reply

  15. Elizabeth Medinilla
    Jan 09, 2015 @ 09:57:22

    Julie love reading your blogs because they embody what I feel but can’t put into words as eloquently as you.
    I had very rough week, woke up night after chemo treatment not being able to move my right hand / arm and my legs. It was horrible, my worst nightmare. Literally could not stand up without help, dead weight. Called onc office who prescribed steroids, next day received anti-inflammatory shot. Slowly getting better. Very scary reaction.
    Was very depressed, however woke up today with new energy to continue fighting.
    I’m not giving up until the big man upstairs says it’s my time.
    Love to you & your family!

    Reply

  16. Barbara Gettelman
    Jan 17, 2015 @ 19:28:04

    Julie, I’m sure you are sublimating your struggle, giving your all to your health and to your family. You know how to priortize and I admire you in every way. Thank you, always.

    Barbara

    Reply

  17. The Astonishing FartMan
    Jan 22, 2015 @ 15:32:21

    La, la-la.

    La, la-la.

    Here I am, sitting in the big waiting room on the second floor of MD Anderson Hospital, pretending to be getting some remunerative work done while waiting for my CT Scan.

    Blood work at noon.
    Hang out pretending to work.
    CT check-in at 2:40.
    Drink oral glow-juice.
    Hang out pretending to work some more.
    Get poked for IV glow juice.
    Scan at 4:40.
    Follow-up appts tomorrow with surgeon and onc (who is not my uncle).

    You know the drill.

    Two and one half years of clean scans with CEAs under 3, and this stuff still makes me crazy. But I’m still kickin’ (against all odds), so I ain’t complainin’!

    Hey, the other day I composed a long brilliant comment, but once again, it disappeared into the ether. (Maybe I need to stop using curse words in my comments?!?!?!)

    Anyway, the gist of that lost comment was:

    1. Happy (Belated) Birthday!

    2. Thank you for your writing. It’s strong, noble, and beautiful.

    3. Three years ago, with the news of recurrence in the form more mets in my liver, when I was sort of in the same boat as you, confronting my mortality face to face, I went pretty crazy at times (especially with a couple of my doctors, who deserved it) because dealing with cancer a second time around is harder than the first time for a lot of reasons–emotional, physical, social, etc. (Shall we say, tongue in cheek, the second time around, the fun of having cancer has worn off?) But I adjusted to the new reality (it’s amazing how normal a person can act when they have cancer), and eventually stopped worry about myself and instead worried about what was going to happen to my wife and kid if/when I died. Finally, I realized I that couldn’t do much about that either, that when I was gone my wife and kid would probably do okay without me, so I stopped worrying (as much) about them, too. I don’t often pray for myself (seems selfish), but when I do, the prayer is “Please, God, don’t let me totally screw up whatever time I’ve got left.”

    4. You aren’t alone and lots of people are praying for you.

    Reply

  18. Barbara Gettelman
    Jan 30, 2015 @ 15:23:09

    Julie, I think of you every day and wonder how you are doing. Just know that.

    Reply

  19. poorab
    Feb 04, 2015 @ 02:16:46

    Honesty is bravery. Your voice is as strong and clear as ever. It brings a smile to my face to read even about your darkest days, because it is real, and it is you, and that is so rarely the case in anything I read by or about anyone anymore.

    ‘You will have time to prepare a face for all of the faces that you will meet…’

    Words that you thankfully do not live by.

    3000 miles away and quiet as a mouse, I still care. And yes, I even hope.

    Reply

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