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When in Doubt, Write the Truth

truthI wasn’t going to write a post today.

Usually by the time Tuesday rolls around, I’ve had a burst or two of inspiration and have at least an inking of an idea of what to say. But this week… nothing. Oh sure, there were a few ideas. They felt insincere, though, so I let them go.

This morning I told myself, why stress about this? People will understand if I take a week off from the blog. I figured I’d say, briefly, that I was feeling sick and not up to writing. Then, I’d come back to it next week.

It wasn’t until tonight that I realized what was really going on. The problem wasn’t a lack of things to write about. The problem was that the truth was painful, and I didn’t want to tell you.

But, how could I go wrong by telling you the truth? There is a purity in the truth, a vulnerability, a rawness. When you tell the truth, no one can tell you you’re wrong (or, you can safely ignore the few who try). When you tell the truth, you build a foundation. When you project an image, you build a house of cards.

Oh, and the truth is not an excuse to smugly hide behind while you say careless and insensitive things to others (“But I was just being honest”). That’s called being a douchebag.

Anyway. So, I decided, when in doubt, when I don’t know what to write about, I will tell you the truth.

I just ask you one thing in return. If you can, just stay present with me for this story. There is no need to reassure me, to tell me everything is going to be alright, that everything happens for a reason, that this all will be over soon, that I’ll be a better person for it. Do you really know if these things are true any more than I do?

(Oh, and for the love of god, please don’t tell me to “Be positive!”)

The truth is that I’m in a lot of pain. By early evening my body aches from the weight of the day. If I’ve had chemo or a shot of Neupogen, it’s much worse. I feel sicker on the days I have chemo, even before the infusion, as if my body knows what’s coming and wants to tell me, “No, thanks!” The pain meds help, but not as much as they used to.

I thought switching from inpatient to outpatient chemo would be a breeze, but I was wrong. I thought the worst was behind me, but it’s not. As my body gets weaker, and less able to recover, the side effects get worse. I try not to think of how much treatment I have left (nine months…), but it’s hard to forget.

I didn’t have any nausea before, but I have it now. Even when I’m not nauseated, I have no desire for food. I’m losing weight, and even my cancer pants are getting loose. (Definition of cancer pants: the fashionable, smaller-sized pants one buys after losing weight from cancer treatments because one looks like a hobo in her regular-sized pants).

I’m lonely. It’s not so exciting anymore that I have cancer.I see people around me returning to their normal lives, and I don’t get to. I wonder if maybe I have to walk this path alone. If I didn’t feel so sick, and therefore emotionally hypersensitive, I probably wouldn’t care as much as I do.

This hypersensitivity is both a blessing and a curse, because I can now read the subtle differences in how people say, for example, “Let me know if there’s anything you need!”

Because I need so much, I can read when a person means it, and will be there for me in any way that is humanly possible. I can read when the words are said out of obligation, or carelessness, or because a person would like to think they’re generous but isn’t really thinking about what they’re saying and will artful dodge my requests when I follow up. The latter hurts more—a lot more—than if nothing was said in the first place.

I’m tired, all of the time. I used to shoot out of bed early in the morning, even on the weekends, excited about all the things I would do that day. Now, I wake up around 11, and spent most of my time on the couch, watching mindless TV. When I have more energy, I play sudoku on my phone.

Don’t get me wrong—I’m not bored. I imagine boredom as feeling as if you have nothing to do. I have the opposite problem. I have so much I’d like to do, but I can’t do any of it.

I’m not quite sure why I’m telling you all this, other than I want you to know, and want to remind myself, that there is no shame in being in pain. It doesn’t always need to be fixed. It doesn’t always need to be corrected.

I know that people often try to reassure others in pain for the most well-intentioned reasons. We see another person suffering and it breaks our heart. We want to reach out and make it better. We want to say the “perfect” thing.

If you find yourself in this situation, let me offer an alternative. First, connect with what you’re feeling. What is happening in your body? What emotions are rising up? What thoughts are passing through your mind? Maybe you hate to see them suffer, or your heart goes out them, or you care so much that it hurts.

First, connect with your inner experience. Then, say something true.

When in doubt, speak the truth. When in doubt, write the truth.

***

Photo by Geraint Rowland

Comments

  1. Thank you! I am experiencing a recurrence of cancer and so many of the things you write, I am feeling and experiencing. It makes me feel not so alone…and puts into words (much more eloquently than I feel able) so many of my thoughts and feelings. Cancer sucks. You give me courage to be a little more honest (with myself and those around me). Thank you!

  2. Thank you for your heartfelt honesty and vulnerability and, while being in much pain, enriching my life. It is a most unusual and odd feeling when you’re told such things and feel that need to say or do something “just right” to “help” the other, when there is often nothing that can be said or done. It feels helpless and that’s never a good feeling. But, I don’t know what to say, other than I hope for the very best for you, so I’ll stop there.

  3. I hope the truth has opened a door for you and for all of your followers. Some of us cannot be with our own pain so being with the suffering of others can be too much to bear.

    One does not have to suffer from cancer to learn from you.

    Blessings for you, Elana.

  4. Elana I don’t have cancer, and I live in Africa so so far away from your world, and yet I have somehow connected with you and followed your story. Your pain and suffering feels so real and I feel very deeply for you. Your story makes me more determined to feel gratitude every single day. I hope that in some little way you can take comfort from the fact that you are thought of often by someone who is in another continent, who doesn’t know you, but who prays for your wellbeing and a relief from all this pain and suffering.

  5. I haven’t walked in your shoes. But I hear you, and I see you. And I am absorbing your truth in the hope that it helps.

  6. Elana,
    Truth? It sucks that you are sick. Truth? I empathize with what you are going through. Truth? It pisses me off that you are going through this and having to take a break from helping the many many patients who need your exact blend of eastern and western psychiatry.
    Truth? I appreciate your honesty. Immensely. Because it’s a great reminder that not only are we all human, not perfect, and all feel pain and disappointment…. but its also a reminder to challenge myself to say something true, instead of something “nice” or “encouraging” that may or may not be as sincere as it should be.
    So I thank you for sharing your truth.
    -Courtney

  7. I’m sitting here in tears, because your eloquent words have touched me so. You write so beautifully. I can only imagine how much your writing helps those who are in your same shoes.

  8. Thank you for writing to strangers so we can connect with you and each other

    • Thank you for sharing from your heart! You are truly a beutaiful spirit, and the work you do is so important, and makes a difference for many souls in this lifetime. Just want to say that I am so happy that I found your blog, I was looking to find information on green smoothies and found your video, and after watching it I have been following you since. I do recommend you to look up a healer for help and guidance with your energyblockage. Being a healer myself I know that you and your body do the work needed when the time is right, the therapist is only an enzyme in the process! We do go through difficult things in life in order to be able to understand and help others, because as you say, without the personal knowledge it is difficult to fully understand someone elses sorrow or situation.Keep up the fine work that you are doing, remember that you are important!Many greetings from Sweden, and lots of love,light, and healing to you beutaiful soul!

  9. Michael Rodriguez says:

    Elana,
    I read your latest post and felt pain coming through. I have no skills, words or magic to ease your physical or emotional pain. However, only speaking for myself, I can tell you YOU ARE NOT ALONE. While it is a pity that we live in a box made of bone that is efficient at keeping us apart, I believe that we are in truth all connected one to the other. It is through this deep connection that I can only hope that you feel the closeness of others who wish you love enough to get you through this difficulty.
    In Peace
    Michael

  10. Dear Elana, your honesty is going directly in my heart!
    I follow you from Munich (Germany) but have the feeling I am sitting next to you and can not do more than giving a massage or talk to you, telling you that you are wonderful!
    You are brave, you are beautiful (in- and outside) and you are not alone! I promise from the bottom of my heart, I will send you as much positive thinkings I can over the ocean. We have spring here, I will send birds singing too.

    And I want to thank you that you make me a little more “braver I had been before I read your words! You made me see the beauty of the spring clearer as years before. You must come over and watch ist some day!
    Cancer sucks! It’s awful, painful,terrible and I hate it so much!
    I am not achristian, but I will pray for you.

  11. Thank you so very much for your blog, Elana! In all honesty I delete most of my emails, even the one’s I’ve subscribed to receive. Your weekly blog, however, is one email I make an effort to read as soon as I see it. What attracts me most to what you have to say is your brutal honesty. I tremendously appreciate anyone who has the courage to tell it like it is instead of sugar coating uncomfortable situations and feelings.

    So far in my life, I’ve been fortunate in that no one very close to me has undergone any experience with cancer. The TRUTH about what one goes through (physically, mentally, emotionally, spiritually) from diagnosis to post remission treatments is scarce to find. There are plenty of people who may ‘share’ their experience, but what they have to say typically feels superficial and impersonal.

    I feel that you are one of the strongest and most courageous people I’ve ever come across. Not only for your ability to take on such an aggressive fight for your life, but to allow your ‘shields’ that must instinctively want to go up, to be lowered and to own your vulnerability!

    After reading your blog posts, I’m always left inspired to live MY life with more strength and courage to BE MY truth! Words will never be able to fully express what your genuine words mean to me. You light a fire under me EVERY week. I thank you for this from the core of my being. Love and Light to you Always!

    Danielle Vanasse XO

  12. Love you. Is something else possible in answer to your body telling you ‘no thanks’? Is there a world outside of this medical treatment where you can listen and hear something else? What would it take?

  13. I’m so very glad you “wrote the truth” in this post. I needed to hear that truth, especially and specifically the part where you said:

    “or because a person would like to think they’re generous but isn’t really thinking about
    what they’re saying and will artful dodge my requests when I follow up. The latter hurts
    more—a lot more—than if nothing was said in the first place.”

    I did this to a friend this week. I *didn’t* think. And then I *did* dodge. And I won’t do it again, because it never even crossed my mind that it would be hurtful, until now (and now, it’s glaringly obvious and I can’t believe I missed it).

    Thank you for being brave enough to share your painful story. Thank you for being transparent. Thank you for being real. Thank you for not sugar-coating things. Thank you for being you, and for putting this blog out there for people to find. Thank you for a dozen other things I am forgetting. Thank you.

    • HI Sarah, thank you SO much for this comment. It means so much to me that you learned from my post, and reflects so highly on you that had the courage to notice yourself as the “other” person in the story and then learn from the experience. And also you show such bravery to share all this in the comment! You’ve helped me too, because I am grateful to know I helped you and maybe others who you will help in the future. It helps me find meaning in what I’m going through :-)

  14. In writing about my struggles with the several neurological & autoimmune diseases I have, I’ve learned that I reach and help MORE people from talking about my shitty painful days, than my “I will survive” moments. Positivity is necessary, yes, but the pain IS there. And it fucking sucks. And it is perfectly fine to say so. :) Keep on truckin’.

  15. Elena thanks for sharing. Not sure what to say. So wont. Been there.

    If you need to talk, this ole social worker available. Let me know… Mac

  16. Thank you for calling me on my bullshit. Your writing reminds me of all the malarchy I keep telling myself- the big one being I don’t need anyone. When I was diagnosed three months ago people came out of the woodwork with everything from gift cards and meals to firewood. and for the last few weeks – Nothing. So, I started feeling sorry myself, backing it up with statements like “Because I am out of sight, I am out of mind.” The truth is that it is ME – I am the one who isn’t reaching out. OUCH. Thank you for helping me do my work.

  17. YOU are not alone! The people who comment on your blog think about you every day!

    I’ve said mostly in jest, “If I can’t think of anything better I tell the truth.” :-)

    Like med school, this is a marathon. Every day is one more yard. Eventually it will just be a bad memory.

    Somewhere there is an inconsiderate doctor with a very bad ink stain on the front of his shirt from a stolen pen!

  18. Thank you for sharing the TRUTH. I also did the same to my Guardian Angel ( previous cancer patient) this morning. Lately I feel all alone in my quest to beat cancer and even though I know I am not I still feel it. And now the Steroid beats is always lurking within me and I will lash out at people I love and then will spiral down the inner hole of sadness. Sadness for the words I just vented.

    Today, 2 days after chemo and one day after the white blood booster shot I also just want to hide and stay in bed even thought I have to put on my pretend tough mask and get into work. I feel for you but together I know we and others in our shoes can persevere, no matter what life brings us.

    Take care…. John

  19. Pain sucks. Nausea sucks. Cancer SUCKS.
    Honesty shines.
    I don’t know where you live or even really know your name. All I can tell you is your courage and honesty help me have the courage to be honest about what I feel and what I need.
    Thank you.

  20. Thank you for sharing your truth and encouraging me to do the same.

  21. The many twists and turns of the cancer treatments can be phenomenally painful. I was amazed at the changes that took place because or treatments. I was amazed at the equally wonderful God miracle changes that can occur after treatments as the body and mind return to better than normal! Best to you Elana and only the best for you!

  22. Beautiful words. Years ago I volunteered in a soup kitchen in West Hollywood, CA. We delivered meals to home-bound people living with HIV and AIDS. We all had different jobs. One day I was assigned to the station that wrote special instructions on the tops of the tinfoil containers. We had lots of brightly colored markers to choose from. “Don’t write ‘Have a great day!’ EVER,” said the supervisor.

    I imagine as your body gets weaker, your mind gets more concise as you register others’ reactions :(

    Thank you for sharing your truth, Elana.

  23. Hey there. I won’t insult you by saying all the normal stuff but I want you to realize I am here, and I hear you. I send you love and light every day. If we were friends or even lived remotely close to each other I would do anything I could to help you. Your words are powerfully honest and these posts will show you how far you’ve come when you begin to get better.

    xoxo
    Susan

  24. Elana, your posts resonate with me because I am a recurring ovarian cancer survivor. I especially identified with this sentence; ” I’m lonely. It’s not so exciting anymore that I have cancer.I see people around me returning to their normal lives, and I don’t get to.” That was so difficult for me to acknowledge.

    Going through chemo, not feeling well enough to get up and out into the world, spending most of my day alone, that was the hardest. Not the pain, not the fatigue, but the lack of connection with my little world. Knowing that life at the school where I taught was continuing on without me, and my presence and impact in that world was fading, much like the photograph images that Marty McFly carries in his pocket in “Back to the Future.”

    It helped for me to think of my time during chemo and recovery as a ‘cocooning’ period of my life. A time for me to be kind to myself, rest, and harness the strength I needed from infusion to infusion. Perhaps that image will help you as well.

    I know how much courage it took for you to post this. Thank you for sharing your journey with us.

  25. It’s great to read from you, Elana. Thanks for not shying away from sharing your painful, raw, inspiring truth with the world.

    Like another poster, I’m currently trying to express gratitude and squeeze as much living out of life on a daily basis. Your posts are helping me to make a concerted effort to be mindful of my actions, and present, because right now is all that we have.

    Your post also reminds me of a quite by the activist Maggie Kuhn. “Speak your mind, even if your voice shakes.”

  26. Thank you for sharing; my husband has a very painful cancer and I look forward to reading your blogs every week; they give me strength to get through the next week; I so appreciate that you don’t want people to tell you it will be okay; sometimes you just need a hug; sending one your way.
    ca

  27. Carol Warren says:

    Truth sets us free, so the truth is you fell like crap and you hate having cancer and what it’s done to your life . Letting all of those feelings out is good for the soul. Your writing touches something in all of us who have battled this stupid disease. So even though you are struggling, you are doing so much good. I hope knowing that you are touching people’s lives helps you on some way.

  28. Thank you for reminding me to have integrity when I respond to those who are suffering. I am in school for social work and yours is a lesson that I hope to carry with me both personally and professionally… I lift you up in prayers.

  29. Dear Elana, thank you for your brilliant, poetic statement, which I tweeted on your behalf: When you tell the truth, you build a foundation. When you project an image, you build a house of cards. Your act of pushing through the interference to publish this was a contribution in itself.

  30. Dear Elana,
    Thank you for being real. In the pain of the truth, we connect with love and compassion. Much love to you.

  31. oops, forgot the full web address.

  32. Dear Elana,

    No rah rah cheerleading from me, I promise. You have virtual friends who care for you from all over the world.

    Our hospital cancer center offers support to help patients on their cancer journey. I bet your local hospitals have similar care.

    “Support groups – General and cancer-specific support groups for patients, family and friends provide guidance and hope from others who have experienced the diagnosis of cancer. Support groups provide cancer patients and families with a loving, safe environment to share their experience. These sessions take place every second and fourth Wednesday of the month.”

    Also, your posts would create a heartfelt, relatable book to help others who are going through this. Your writing is powerful and it makes a difference.

    A huge Red-tailed Hawk just landed on top of a tree on the hill next to my office. That has to be a message of hope of some kind.

    Take care,
    Melanie

  33. Perhaps you saw this article… It’s a super essay. She makes her point, and some tears. Much love.

    An adult in the pediatric ward: What the littlest Cancer Avengers taught me
    By Ann Graham
    http://www.cnn.com/2014/02/21/health/irpt-little-superheroes-ann-graham/index.html?hpt=hp_c3

  34. Thank you….

  35. Hi Elena,
    I feel privileged to read your authentic and insightful words, k

  36. Hang in there. Lots of emotions involved in what you are going through. I just finished all my treatments in December and I “get it.” Something that I think you have to go through to know how it feels. Just know lots of people are thinking about you and praying for you. Stay strong.

  37. I hear you. I am in my fourth month of outpatient chemo, and during my first round of chemo I was really sick with nausea, in particular. The neulasta shots certainly didn’t help, but the nausea was the worst. I get what you mean when you basically can’t do much of anything, but it has nothing to do with feeling bored. I felt like all I could do was move from the bed to the couch to the bed to the couch. And trying to figure out what to eat was challenging. Toast with mashed up avocado on top helped. And grilled cheese sandwiches helped. Granted, they are not foods I would eat with regularity when not experiencing chemo, but when nausea hits, I found that I had to really think about what I would eat, healthy or not, and go for it. I’m gluten-free, so my bread was a chia seed bread, but still. Those of us that have walked in similar shoes are definitely there with you. Sending LOVE.

  38. Dearest E,

    Two thoughts:

    1) The beauty of the truth–the truth we feel and experience–is that it’s alive. The truth is alive. And everything alive changes. The hard truth today will soften–maybe in a few hours, maybe in a few days or weeks. Maybe longer. Let hope buoy your truth.

    2) Your reflections about how the rest of us (ha!) go on with our lives “out there” as you continue on your hard path, lead me–as I am so often led–to Emily Dickinson. Here’s the poem that comes to mind now:

    To make a prairie it takes a clover and one bee,
    One clover, and a bee.
    And revery.
    The revery alone will do, If bees are few.

    Yours in love, revery, & the hard work of survival,
    L.

  39. Elana, I don’t know what you are going through because I have never had cancer, but I understand what you are going through because my wife of 40 years passed away from breast cancer 17 months ago. She was diagnosed and passed within 6 months. The doctors think it either came back in her lungs or she developed an allergy to the chemo and caused fibrosis of her lungs. She developed a severe rash and pain in her hands and feet after every chemo treatment. Donna was in lots of pain and I felt helpless but she was a soldier and toughed it out, but in the end we couldn’t save her. She was a nurse for 30 years and did a lot of research on her disease and treatment and found that if you take a Claritin before the shot they give you to boost the white blood cells, she had less pain. Maybe this would help you, hope so.

    I wish you well, and that you have no more pain. I understand.

    Jeff

  40. Dear Elana,

    Thank you so much for continuing to share your story. It is inspiring that you continue to write through so much pain. Your courage helps me feel less afraid and more alive.

    Thank you again.

  41. I followed your advice:
    I feel that your pain sucks. I feel guilty on some level that, for the time being, I am spared pain and you are not, and you add a value to others that I may not…
    I wonder not if my time for pain will come again, but when. I shrink away from certain, actually most, pain and can be a coward. Sometimes I don’t want to be brave when facing pain, I want comfort. I am impatient for relief and want it on my terms, and hated relinquishing control of my own body to something foreign I did not invite in…there were moments when I relished in being rather helpless because I could. I grieved, I celebrated, struggled and was and am grateful to be alive at a time and place to access care. Conditions imposed upon us don’t avail us to choice and we endure. Life can really suck, and we endure, and at the end, I hope to impart a happy energy to the universe, because I will never relinquish that…

  42. I think that your speaking the truth [which seems remarkably hard and is very precious] allows me to know how you are — which I’ve wondered about. It allows me know you still need and want support. And that speaking truth is valuable. It suggests to me this thought ‘Maybe I can be as courageous as you’. I am holding you in my very tender thoughts.

  43. I love you

    FUCK cancer.

  44. F U cancer! You will beat this.

  45. I came across your blog and have been following it for a while now. I am always moved by your posts, and this one was particularly moving. I have not had to go through all that you are going through…my treatment was much easier…but I do understand your feelings, and appreciate your honesty. I think of you often, even though I don’t know you. I will continue to send you healing energy.

  46. Thinking of you. Thank you for sharing.

  47. Oh Elana, as long as we’re being honest, cancer sucks ass, and chemo sucks even harder. I got through my first three treatments so easily that I planned to change my last treatment so I could go to the annual family gathering at the Michigan lake house. My oncologist agreed to change the treatment date but kept warning me of the cumulative effects of chemo. So when August rolled around I was barely able to make my way to the couch let alone Michigan. It’s so hard and discouraging and … necessary. So I’ll end by saying yes, it sucks ass, but you will kick its ass. This I know to be true. Right now, you have no concept of how that could happen, but eventually, you’ll be in a spot where you only have three herceptin treatments left (for me) and you’ll be done.

    I’m so sorry you’re at the sucky phase.

  48. First time commenter, fan since Keck 2006 — I suppose it takes the kind of pain you described so beautifully in this post to give someone like me a glimpse of what TRUTH and LOVE really are. Cancer is an asshole, but loneliness sucks soooo hard. Your thousands of followers are fighting our vicarious pain with commiseration. I hear you, and for whatever it’s worth, I’ll keep on hearing you. Much love!

  49. Thank you for sharing honestly. I have experienced a different life-altering pain, but I want to share with you that I have benefitted immeasurably by attending a related support group. The isolation is curbed, & those in any specific support group can understand like no other. Peace…

  50. Thank you SO much everyone for your kind comments and reminding me how many of you are out there who are rooting for me. I’m am so grateful for you. Thank you for being here with me as I’m going through this.

  51. Elana,

    Thank you so much for sharing so much of yourself with all of us. I was diagnosed with interstitial nephritis around the time that you were diagnosed with cancer. I am told there are some really significant ways this will change the course of my life, being that I am in my late 20s and the damage is significant. I have felt a closeness to you in reading your blog, since we have some overlaps… my husband is a medicine resident, my ability to have children has been called into question, my focus on living in the present has been greatly enhanced by this experience. My passion for life, and appreciation for the depth of the experiences I am going through have been deepened. I so relate to and am strengthened by your process, and look forward to continuing this journey along with you.

    I have had a question, and I hope that the answer may help me in my journey…in the beginning you asserted really positive affirmations about how you will recover and what will be positive results of tests etc. I haven’t been able to harness that kind of confidence. How did you do that, let alone post it on a blog, in spite of doubts and fears that they may not actually come to fruition? No one has really posted questions so I apologize if there is a better forum for this than a blog comment and understand if you do not have the time/headspace to respond.

    Blessings of peace and health and love.

    • Hi Bev, that’s a good question and, thinking about it, I’m not sure of the answer. That was just my natural response to the situation at the time. The initial diagnosis was so serious and so shocking that I think deep down my body knew I had to do anything I could to not roll over and give up. You can imagine it like, Do I see this as a curse, or can I see it as a challenge? If it were a challenge, how would I face it?

      • Thank you. I guess it’s just about rising to the occasion. This is my reality, this is my present, this is my life, but simplifying it into this is my challenge and how do I approach it, helps. I am not one to back down from a challenge.

        Thank you again for sharing your journey. I am so relieved for you that you are in remission, and look forward to a day when this is long behind you. Until then, I hope the growth this experience offers you provides some solace in the face of so much pain and hardship. And when it doesnt, thank you for your truth, since we all who are dealing with serious illness have such dark, low points, and its better not to feel guilty about them. Because it is real, and its huge, and its daunting, and sometimes its just really hard.

        Thank you.

  52. Elana,

    Thank you for speaking the truth. I really felt your suffering. I hope your docs are offering you consultations with a Palliative Care team so that your symptom management can be maximized (nausea!), and to give you the best quality of life as is possible as you sojourn through chemo. They would be pleased as punch to be “fired” when you’re cured. Chemo fatigue is unlike any other. Living under the cloud of nausea drains one of happiness, and after awhile, one can forget that it (happiness) can even exist. But the cloud DOES lift.

    Thinking of you daily,
    Deborah

  53. You may be in a shitty place right now but you are certainly not alone. I have been thinking about your story and incorporating your insight into every part of my life lately, including not allowing any BS into it. You’re a big deal in my book. Just let it all out; we are here, we hear you. We are listening.

  54. Aleksandra A. says:

    This is not a film.This is your one and only life.Someone once said:”Sometimes we get what we want, sometimes we get what we need,although we don’t want it, but sometimes we get what we get…”This is a border-state. In border -state all of us face with one and only truth, that all of us are basically undeniably alone.
    Be kind to yourself ,dear Elana…

  55. I had Hodgins Lymphoma. I have been in remission 11 years this summer. I read your words and it feels like yesterday. I remember getting up in the morning determined to feel better. I would jump in the shower and by the time I stepped out, I was exhausted and needed to lay down. Spending most of my day on the couch, I can still feel the pain that came from inside my bones. I would clench my teeth and wait for it to pass. Everyone has their own story of recovery. I feel blessed to be here 11 years later and the problems I deal with now (eat better, exercise more, etc.) are common. My inner peace during a difficult time came from relinquishing control and allowing others to take care of me for a change. One Day At A Time.

  56. Chrissie Fitzula says:

    Elena,

    Thank you so much for writing your truth. I relate in so many ways. I’m 33 and was diagnosed in october. I have amazing friends in my life but there are many times when I feel the most alone I have ever felt in my entire life. I find myself withdrawing from some because i feel like my lack of positivity at this point is draining. I have told people that if i could get away from myself I would. I have flighting moments of positivity, but they dont stick around for long. I think you are very brave to be writing this blog and I hope it helps you as much as you are helping others while doing so.

  57. Dear Elana,
    Thank you so very much for this profound writing. Amen, amen.
    Love, Mary Ann

  58. Dear Elana,
    i can relate so much to what your words are expressing. To doubt is sometimes so hard: am i aloud to feel like this, am i ever getting better, will this Sh** ever end or change … ? And to be needy, feel lonely or just hate happy people for a moment sucks! But seconds later to feel shamed, because of how you might have treated people who just wanted to help, sucks as well. As someone who can be quite impatient, has lots of ideas but only limited strength or somtimes pushes someone away i love the most … i wanted to say/write: You Are Not Alone!!!
    Love to you …

  59. Hi Elena,
    It’s k again and I just came across something that I thought you might be interested in. I don’t know if you are familiar with EDX courses but they are free online courses taught from major universities around the world. These courses are free and can be simply audited with no requirements other than an interest in the topic. I have taken several and they have been outstanding. There is one starting on March 2 called “The Science of Everyday Thinking” that I think you may be interested in. This course is taught from The University of Queensland in Australia and the professors teaching the class hail from some of top universities in the world including Harvard Medical school. I am including a link to the course description so you can take a look. Once the courses start the classes can be accessed at any time day or night with no restrictions as to viewing time. Finally there are many other classes to choose from throughout the year that may be of interest to someone with such broad interests as I have come to know you possess!! Take care and talk soon, k
    http://edx.us5.list-manage.com/track/click?u=1822a33c054dc20e223ca40e2&id=226debf590&e=17cefe1936

  60. I am a cancer survivor. After reading your post, it’s obvious to see why you’ve genuinely touched so many readers – one can never go wrong with the truth. One thing I know is that the fight can be lonely, not only in the midst of treatment but long after. Oddly, most people assume it’s over when a person is in remission — but being a young adult cancer survivor, I can tell you that even with a strong positive attitude and an abundance of gratitude — it’s been tough to pick up the pieces … I’m doing it day by day, just as I did during diagnosis and treatment … xo

  61. Hi Elana,
    I want to thank you for writing today. Today’s blog has really hit me where it counts. The part in there where you are talking about everyone else going back to their normal lives and you can’t…yet, anyway
    You talk about how you used to get out of bed in anticipation of all the things you want to do that day and that now you stay in bed till 11 and sit around and watch TV all day…
    That’s what hit me… I’ve had struggles that have made my life hell too but it’s not pain, nausea, malaise or anything physical keeping me in bed until 11 and then sitting and watching TV all day.
    I have my health.
    When I read what you posted today it was like an epiphany hit right between the eyes. What the hell am I doing to myself.
    You inspired me today, in your pain and nausea, you wrote something that will pick me up and get me back on track because somehow you made me see that I was getting it all wrong and you set me straight.
    Thank you so much!

  62. Hi Elana,

    about honesty…..when I was sick there were certain times I hated everyone who was sorry for me and wished me well. How could they have any idea how I was feeling? How is easy is it to wish someone well. At the same time I felt guilty, because they all meant so well. I asked myself, why me….why not everybody else, why not my nosy neighbor, my mean classmates in high school…but there were other moments when just a sincere smile made my day…..all these people here are maybe like a gigantic blanket under which you will feel safe when you need it on your long journey.

  63. Cancer and the pain it has brought have taken so much from you. But not your ability to use “douchebag,” “hobo” and “artful dodge” in the same essay with complete authenticity. Your writing glistens, Elana, and so does your spirit. If I could, I would kick cancer in the nuts for you. Hard. XOX

  64. As a person who deals with pain every day (doe it matter why?), and has done so for 20+ years, I want to say that I am at work and my eyes are filling with tears. No a bad kind, a good kind. Don’t worry, I won’t let anyone see. Thanks.

  65. Barbara Snow says:

    Dear Elana,
    It is the beauty of all the truths you are gifting us that keeps you in our hearts. Don’t be brave for us, be the honest, open woman that you are. Pain sucks – go ahead and tell us about it – we’re here, we’ll listen. That’s the only promise I can make.
    Wishing you boatloads of painless days ahead.
    Fondly,
    Barb in Minnesota

  66. ALL cancer sucks. You know it. And thank you so much for being honest about it.

    I am currently waiting for an appointment with an oncologist for confirmation of mets from a rare neuroendocrine carcinoid originally in my appendix.

    No one believes my symptoms of Carcinoid Syndrome (aka “it’s all in your head, honey!) So I wait. And “self medicate” to get through the day of pain, fatigue, swelling, hot flashes, thousands of trips to the bathroom.

    I’m 34. I have 4 children (aged 11, 9, 3, 2). Two are adopted from foster care. Two are special needs. They NEED ME and I NEED them! I am NOT finished with this life, AT ALL!

    So, to you, I say… Complain. Cry. Fight. There are so many of us with you… It is unbelievable. And devastating.

    And, thank you for grounding me and reminding me where my focus should be. You have been a blessing in my life.

    Stay with the light my dear friend.

    Very sincerely yours,
    Erin

  67. Thank you for your words. What helped me while going through treaent was to figure out when i would likely be done and then mark the days off in my calendar. Sometimes after a particularly hard day (all days were hard…some more so than others) crossing off that day would give me the only sense of fulfillment I had all day. It is a long road. A lot of people will help you get started, but only a few, I think, really walk it with you. An sometimes you are alone, because you’re the only one in your body, but never forget to reach out when you need someone to walk with. I used to, and still do, think of it as being on a boat. *i* am Sailing this shit. I have a few crew members. I have a lot of people waving from the shore. And honestly, I am okay with that.

    Still wishing you the best as you put one foot in front of the other in this road !!

  68. Treaent? I meant treatment. Chemofingers.

  69. Hey Elana – writing the truth should be the only option, whether you’re in doubt or not. I’m sure you know that already. Are you a film buff? When you see a great film, it’s truthful, even if it’s emotionally ambiguous and doesn’t offer any answers to the hard questions. Much of the time, people feel uncomfortable about this, and the film is considered risky, artsy, non-commercial, non-mainstream. Kind of silly that a film that speaks the truth would be considered non-mainstream. So ‘mainstream’ means that the general public likes to avoid the truth? I don’t know. Anyway, why am I talking about films? I guess this is why:

    When you see a film that’s truthful, it’s a gift, even if it makes you feel uncomfortable. It’s when it’s not the truth, when you’re trying to throw sunshine up someone’s ass, tell them something that’s only half-truths, that we roll our eyes and say, screw you, you just wasted my time. I’d rather feel uncomfortable in truth than basking in a ray of lies. So, with all that being said, thank you for speaking the truth, in all its ugliness and beauty. Hope that every day is getting a little bit better.

  70. Your distinct awareness of human interactions and ability to discern their motivations is poignant and, I think, reveals also something fundamental about what it means to be alive: some people are honest and some people are not. But the most that you can do is be honest with yourself. It helps a bit, with time. I can’t quite put myself in your shoes because I have seen the cancer shoes and cried over them, but have not been in them myself–not just yet, anyway. Your eloquence and exuberance are to me beauty and strength. Simply being the best you that you can be, and if you can admire the funny things children day or the way dogs chase after senseless things or the way the grass bends in the wind. It’s all that anyone can do, but sometimes it’s just enough.

  71. Thanks again for your wonderful post, and I so appreciate your permission to re-post it on my blog.

  72. I can’t imagine what you are going through and what you have to deal with on a daily basis. My father suffered from cancer for many years when I was a teenager, and reading your words helps me feel closer to him somehow — your eloquence helps me see into his world a little more deeply and I appreciate that even though I am sad for you, sad for him, sad when people have to be in pain. Thank you for sharing your truth. xox

  73. Just discovered your blog today, and I hear you. I do not have cancer but am losing my mobility, years of autoimmune disease and much carelessness on my part have brought me to this point. I have yet to write such an honest post but who knows, I just might. If that happens, I will remember you and thank you, again.
    Karen

  74. Unfortunately we live in a society when you’re only allowed to be truthful and candid if you’re ill. People give you pass then (understandably as well). If you do it when circumstances are relatively benign you get accused of being bitter, objectionable, depressed etc etc. It’s a strange one.

    Everyone hear reads this and thinks “yeah you’re spot on” but keeping it up in the real world, when you’re healthy, is nigh on impossible. You fall back into insincerity eventually.

    Great blog by the way.

  75. Hi Elana,
    I have the same type of cancer as you and your words echo my thoughts a year ago almost exactly. I appreciate your honesty. Often through my treatment I found it exhausting putting a positive spin on how I was feeling because it just wasn’t the truth. I had copious amounts of nausea, pain (especially from the steroids), a constant level of tiredness and a continuous feeling of being sick with the flu. I know you are probably sick of hearing this, I know I was and I never believed it, but this will come to an end. The truth is I found outpatient chemo much more difficult than induction and by the end of it I felt like I had absolutely nothing left, but just when I felt like I couldn’t endure one more cycle, I was done. It has been several months since I finished and although I’m still recovering, I feel like I’m starting to get my life back on maintenance. I still feel tired but nowhere near as tired as I felt before. The phrase, “this too shall pass” helped me immeasurably over the past year and maybe you will find it helpful too.

    I have had a lot of difficulty and still do, sharing my true experiences through this cancer journey. I have only been unguarded with about three people in my life and I don’t even think my own sister understands how hard it has been because I have sheltered her from the truth. Thank you for sharing your story and showing that it’s okay to be honest. The truth is cancer is rough and it’s real but telling the truth allows you to make connections you never thought possible and makes it all a little more bearable.

    Letting you know you are not alone, wishing the best,
    Jenn

  76. Your story resonates with me, not because I’ve lived it, but because I lived through 8 years of cancer with my mom. I understand cancer pants. And now I understand it so much more objectively, more empathetically, than I did when I was in my 20s and so afraid of my mom’s illness. I honor you, what you’re going through, & how you’re choosing to find strength & courage. Writing & truth can be so healing. Best wishes to you on your journey.

  77. Every time I read your blog I end up crying a little. I get overwhelmed with emotion. It’s not sadness, as much as it is beauty. Thank you. It’s really heartfelt and touching.

  78. Thank you Elana. I have accidentally found your website by searching for a quote and have stayed reading your blog. Thank you for being honest and open and real and reminding all of us to be the same and stay true to ourselves. I wish you the best with your recovery.

  79. I’m a survivor and as the memories fade away, the ones that remain are the very vivid feelings of loneliness. I feel like I could have written this post myself with everything from the seeing friends carry on with their lives, mindlessly watching TV, Neulasta injections, to cancer pants.The truth is, no matter who is around you trying to support you, you really do have to go through this alone. I’m not saying this to make you feel worse, but to say I understand.

    I wish you all the best in this difficult battle.

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