Pain

For a week, I’ve been trying to write but nothing comes out.  Nothing coherent.  Nothing good.  I am in chaos, and so there can be no good writing under the circumstances.  I decided I should just write to provide you all with an update before more time passes.

After my last post, I was unable to persuade Dr. Y, the radiation oncologist to move up radiation treatment on my spine.  He didn’t perceive any immediate danger; he said the tumor seemed to be growing into my bone, rather than towards my spinal cord.  I suppose he was right since I made it to the radiation treatment on June 5 without becoming paralyzed beforehand.  In fact, the pain seemed to ease in the interim.  I was shocked and attributed it to my conscious effort to sleep with proper alignment.  I had three radiation treatments on consecutive days.  The radiation treatments themselves were uneventful, quick and easy enough.  It was the after effects I hadn’t quite expected.  Pain.  Excruciating, throbbing pain in my upper right back, the kind of pain that had me sitting up at night, desperate to rip that part of my body out.  I turned to Oxycodone, which relieved the pain, but had me feeling washed out the next day, very sleep deprived, nauseous and vomiting multiple times in a 12-hour period.  Apparently, it is normal for the pain to get worse before it gets better after radiation.  Of course, no one told me this.  I thought many times that if I couldn’t manage the pain, I would have to go to the ER – that’s how bad it was.  Thankfully, the pain did get better after almost a week and is now nearly entirely gone.

But now I have pain elsewhere.  Pain in my left butt and leg that has steadily worsened over the last few weeks.  I’m convinced I have a new met in my lumbar spine.

I’ve been experiencing random vaginal bleeding as well – sorry if that’s too much information, but why should I hide that since I talk about everything else?  Of course, I’m worried it is a second primary cancer.  It took weeks to get an appointment with a gynecological oncologist at MSK, whom I finally saw this past Tuesday.  She took some pap smears and did a uterine biopsy, the results for which will not be ready for about a week.  While she couldn’t say for sure until the results were back, she thought my bleeding issues were more likely caused by the location of metastases from the colon cancer, rather than another primary cancer.  I don’t know what would happen if I had a second primary cancer.  The idea of it seems unbearable to contemplate, but in truth, everything I’ve endured during these past four years at one point seemed unbearable to contemplate.

Finally, the tumor next to my belly button has been bothering me a lot again.  I can literally feel the tumor now, probably because of my drastic weight loss.  The current study drugs robbed me of the ability to taste for many weeks, which caused me to lose a lot of weight since I lost interest in food and ate solely to not be hungry.  I can taste now, although nothing tastes right, so my appetite is still not where it once was.  Additionally, the vomiting from the opiates hasn’t helped.  The radiation has also caused me to have a sore throat and feel like I have a lump in my throat, which makes it difficult to swallow.  That has also not helped me to eat more.

Back to the tumor.  I play with the tumor, rubbing it, imagining it, measuring it.  I use my thumb and forefinger to determine its length and then hold those fingers up against a ruler – roughly 2 centimeters, just as the last scan report said.  I touch it, caress it, worship it, almost as if it were a rabbit’s foot, a manifestation of God to whom I can pray for salvation.  Sometimes, it feels like it’s answering my prayers, like it’s calmed down, shrinking even.  Sometimes, it feels enraged, big and furious at me for trying to sway its will.  In the end, it controls my mood.  When it is calm, I am calm (optimistic even).  When it’s angry, I am angry (and scared and sad).  But more importantly, I know it controls me and whether and when I live and die.

I have scans next Monday and then meet with Dr. S for results Friday.  The scans will likely be very bad if pain and just my general physical well-being is a gauge.  I’m trying to prepare myself for the worst.  But I don’t know how to.  I don’t know what the next steps would be, if there would be next steps for me.  Instead, I struggle with being okay with dying.  I tell myself that I’ve lived a good life.  I tell myself that I am not afraid of dying, that I am so tired and in so much pain, I want to die at this point.  Most of the time this is true, but I am not fully there yet.  I haven’t found the peace I so desperately want, the kind of peace in which I would be okay with a bad scan, knowing that death is coming that much sooner.  Peace is all I really want.  The question is how do I find it.

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13 Comments (+add yours?)

  1. Paul edelstein
    Jun 22, 2017 @ 22:27:47

    Oh gosh Julie. Don’t give up and don’t give in
    Don’t

    Reply

  2. Barbara Gettelman
    Jun 22, 2017 @ 22:31:38

    “Praying” for you Julie, for comfort and peace. And I guess good news if it isn’t too painful. It’s just so much torture. Don’t kid yourself. You are among the bravest…

    Reply

  3. Katie
    Jun 22, 2017 @ 22:37:39

    Julie, I am sorry. Is it possible to find peace? Maybe the only thing to do is channel your rage and sadness into a project for the girls. I think that’s what I would (will) do. But I’m sure you have already thought of this, because you are you.

    Reply

  4. Eric
    Jun 23, 2017 @ 00:14:10

    I’m sorry to hear about the pain in your leg. My friend who is a stage IV colon cancer patient also had pain in her leg which ended up being a reaction to the chemo, Praying for good scan results and a good report from the physician. We’re all here with ya’…

    Reply

  5. sue
    Jun 23, 2017 @ 06:37:15

    My prayers are with you Julie…you are strong and focused…..but my heart is sad that you are in so much pain 💗

    Reply

  6. Giada
    Jun 23, 2017 @ 08:22:19

    the best advice I have is to listen to your own heart. do not listen to folks who say “don’t give up” or “you have to let go and go the hospice route.” there is no shame in turning to hospice and no shame in continuing treatments. This is your life and you are presented with horrible choices. Your last thoughts are to wish for peace and my wish is that you are at peace with whatever choice you make. My heart goes out to you.

    Reply

  7. Della
    Jun 23, 2017 @ 10:30:41

    I’m in tears. I, like many, have grown a great admiration for you. You are strong, intelligent, courageous, determined, adventurous, and one hell of a writer. I’m sorry your in such extreme pain. I hope you can find something that will help alleviate the pain (and not turn you into a zombie) so you can be present for the family and enjoy each moment you have with them. I think of you often and will be sending positive thoughts into the universe for you and your family.
    -Della

    Reply

    • The Astonishing FMan
      Jun 23, 2017 @ 17:07:40

      Dear Julie,

      How glad I was to see that you had updated your blog with a new post. Now having read it, I am so sad and so sorry that you are suffering. Yet I’m still grateful to hear how you are doing because I want to know how you are, even when you are not doing so well.

      I’m thankful for your writing. Can it be a consolation to you that your writing teaches us about life even when you are wrestling with the prospect of death? Can it be a consolation that your pain, now making your writing more sparse, seems also to make it all the more intense and incisive, leading your readers to reach for higher and better thoughts, pushing us to strive for a higher and better life?

      For you, in gratitude for all the powerful writing you’ve given us, I want to write something true and helpful.

      When I was very ill and needed someone willing to talk with me about death, hardly anyone was willing to “plumb the depths” with me because the subject was too difficult for them to speak about frankly. Instead, most people would reassure me I was going to be fine. And although I was grateful for the kind thoughts, I felt alone and lonely because it seemed no one would talk with me about the subject pressing on my mind that I was left to deal with by myself.

      I don’t think it is possible ever to make a complete peace with the idea of death because instilled into our human nature is the desire always to want to live. We always want more, as we should. We are like beggars who have been given one dollar and want five. We always want more life, as we should. Yet our desire for more life should not deprive us of the pleasure and real joy of feeling gratitude for the gift of the life we have received. Of course, I can imagine how a person might welcome death—not for death itself—but as a release from physical pain or even more as a release from the psychic pain of living in the shadow of death. When it seemed I would die soon, the waiting for death sometimes became so horrid that there was sometimes an angry or exhausted wish to “dammit, just get it over with” in order to put an end to the dread and uncertainty.

      I know also that your thoughts and feelings about death are more than the natural foreboding one often feels at the prospect of one’s own demise. It is also an overwhelming sadness at the idea of being separated from your girls and husband and others you love. Does it console you to know that you will live on in them in this earthly life, and in your children’s children, and then you will be together again with them in God’s eternal love? I have faith that is true. You are not coming to an end. You are making a passage.

      No, I don’t think it is possible to make peace with death in advance. The best we can do is try to make peace with life (which must be an imperfect peace because nothing in this life is perfect), try, while we are alive, to live as good a life as possible (which cannot be done perfectly when one has to deal with pain and complications of cancer), and then, when the time comes, try to let go of earthly life with courage and a loving spirit. That’s what you will do when it’s time. But not yet. It’s not time yet.

      (Please remember: It’s okay to be afraid. Courage is not the absence of fear, but is acting rightly while being afraid.)

      Reply

  8. Tyler Burton
    Jun 23, 2017 @ 12:22:11

    Julie, I hope that you can find some magic with the girls. Order a princess party in a box shipped to your lovely apartment? My thoughts are with you. I hope that your pain subsides a bit at least. You are so strong. Sending positive thoughts your way!

    Reply

  9. Michelle
    Jun 23, 2017 @ 23:10:29

    Julie, you have such strength. You are loved and wished relief and comfort.
    Please know you have given us the most wonderful GIFT of powerful and eloquent thoughts, meaningful on so many levels to many of us on this same journey. Thank you and God Bless you.

    Reply

  10. Sarah Gonzalez
    Jun 24, 2017 @ 02:05:13

    I feel for you so much. I too have stage 4 colon cancer and have struggled to make sense of it. I am praying you will find peace.

    Reply

  11. Kelly D.
    Jun 29, 2017 @ 18:09:28

    Julie,

    I check your blog regularly and think of you regularly even though I have never met you before. I did reply to you once a while back, and have almost replied other times but words sometimes escape me. I want you to know that you have touched me deeply, I have learned a lot from you, and I wish you comfort and peace. My husband battled colon cancer so I am acutely aware of the devastation that it can bring. You will continue to be in my thoughts.

    Reply

  12. The Astonishing FMan
    Jun 30, 2017 @ 12:22:20

    Julie,

    Something to fall back on, when you can’t make sense out of cancer (or life).

    ANSWERS
    Words and Music by Kacy Crowley
    (from Cave)

    Far and above the hardest thing
    Is just to expect the suffering.
    There’s no map that you get,
    No answers that stick.
    There’s no big flashing sign,
    No race that you’ll finish.

    But there is love.
    But there is love.

    It’s the only reason I bother
    To get up in morning and shower.
    To get out of my house and wander
    The streets with a thousand strangers.

    If you’ve got questions,
    Love’s got answers.

    Love’s got answers.

    Up and beyond the mystery,
    A truth just like rain that you can’t see.
    There’s no corner you’ll round,
    No rules you can count on.
    There’s no age you become,
    No door that you’ll open.

    But there is love.
    But there is love.

    It’s the only reason I bother
    To get up in morning and shower.
    To get out of my house and wander
    The streets with a thousand strangers.

    If you’ve got questions,
    Love’s got answers.

    Love’s got answers.

    Answers.

    There’s no lesson you learn,
    No test you can take.
    There’s no code that you’ll crack,
    No lock you can break.

    It’s the only reason I bother
    To get up in morning and shower.
    To get out of my house and wander,
    The streets with a thousand dangers.

    If you’ve got questions,
    Love’s got answers.

    If you’ve got questions,
    Love’s got answers.

    Love’s got answers.

    Answers.

    Answers.

    Reply

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