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I Feel.

ifeelI feel…

Much better than I did after my last chemo cycle.

I feel tired, but not bad.

I feel really glad that using a smaller needle for the lumbar punctures spared me the headache.

I feel thrilled to have a port and have that PICC line out. There’s nothing like having medical tubes dangling out of your arm to make you feel extremely cancery. Plus, with the port buried under my skin, water immersion (showering, surfing even…) is back on the table.

I feel appreciative for all the help I’m getting from friends and family.

But I feel frustrated—really frustrated—that I need it.

Sometime I feel resistant to accepting help. Why can’t I just take care of myself like I always have? Why can’t I wrestle this beast to the ground with the sheer force of my will?

I feel this buzzing anxiety, like there’s something I should be doing but I’m not quite sure what it is.

I feel excited to get my temporary disabled parking placard in the mail (is it weird that when the case manager gave me the paperwork for it, even though I had just been diagnosed with cancer, I still felt like I had been given a million bucks? If you don’t understand what I mean, try parking in West LA pretty much anytime, ever).

I feel curious wondering how I’ll react if someone seeing me use it carelessly assumes I’m milking the system and gives me a hard time (after all, I don’t feel great but it’s not like I look that sick). Perhaps I’ll stare at the person intently, dramatically tear off my wig, and hiss, “I have cancer!

(Just kidding, I wouldn’t do that).

I feel so glad that I have excellent health insurance, a kick-ass oncology team, and a curable form of cancer.

I feel 97% sure I will beat this thing with my first course of chemo and will never have a recurrence.

The remaining 3% of me feels apprehensive imagining what it will be like being done with chemo, with nothing to do but wait to see if the tumor comes back.

I feel like I’m probably getting ahead of myself with that last thought.

I feel a little embarrassed, but also a little badass, that I went to the barbershop over the weekend with my boyfriend and splurged on a straight razor shave while he got a haircut (I just couldn’t take that patchy velcro head stubble anymore). Women: you are missing out. They use hot towels and warmed shaving cream. It’s awesome. However, my remaining head stubble is now in the form of male-pattern baldness.

I feel frustrated that I can’t think like I used to, speak like I used to, or write like I used to. Before, when everything flowed (which happened more predictably the more I wrote), it seemed I could do anything with words—communicate any idea, persuade any point, evoke any feeling. Now writing feels like squeezing blood from a stone. I miss you, lovely words. Why are you abandoning me when I need you the most, when there’s so much to say?

I feel worried that this chemo brain will be permanent. If I don’t have my brain, who am I?

I feel tired of clogging the toilet because I have such f’ing bad diarrhea.

I feel bad for my boyfriend, because he’s suffering as much as I am and I don’t know what to do to help him feel better.

I feel… not much. Blank. Dull. Like there are difficult emotions churning beneath the surface that I can’t connect with, because my body knows I’m not ready to.

I feel okay with that. There’s only so much a person can process at a time.

***

Photo by Casey David

Comments

  1. Healing thoughts girl! Now is the time to employ all your anxiety management skills you help your patients (and us) with.

    You are in treatment, so your mind is distracted and medicated…you will get better!

    Hugs!

  2. Christina says:

    We are with you, Elana! Your words are still beautiful. Thank you for continuing to write and share with us. Keep fighting, you’ve got this!
    Hugs from NYC!!!

  3. Dee Sulenski says:

    This book might be helpful for your boyfriend: “Breast Cancer Husband” by Marc Silver EXCELLENT for HUSBANDS!

    I am a BC survivor and very active in an on-line BC support group. If you’d like to join us email me and I’ll give you the info.

    Wishing you Peace, Love & Healing, Dee

  4. Blair Gordon says:

    You are inspiring. Not just to me, but to many. You are strong, beautiful, and empowering. Thank you for sharing this with the world! Lots of healing thoughts and prayers from my family to you.
    Blair

  5. I feel you!
    Just before I got the notification of your post I had just posted an entry on my caringbridge blog:
    “What about right now? Yes, I was hoping this would be the week to move forward in kicking the rest of cancer’s a$$ and I’m realizing that this time is probably being given to me so I can really sit with me and acknowledge all the stuff I’m really feeling about the last five months and this cancer diagnosis almost 8 weeks ago. It still seems like something I have not grasped yet, even though it’s on my mind whenever my mind has space for wandering.”

    Your words haven’t gone anywhere except deep into the hearts of thousands of people, including you. I’m so grateful for your sharing them! Continue on the fast track to cancer-free!

  6. Elana, so glad you are feeling even the least bit better. Even with chemo brain, your personality as we know it comes through -completely- and as long as it does, cancer doesn’t have you. Thank you so much for sharing such huge experience with us. It is most enriching, and we are humbled to walk this journey with you. Take care :)

  7. Dear Elana, as a soon to be caregiver…my husband was diagnosed with stage 3 esophageal cancer on December 23, 2013. His treatments will start January 27,2014 with 6 weeks of radiation and 6 sessions of chemo.
    As a soon to be caregiver…I feel fortunate to be capable to care for my husband.
    I feel that he is most comfortable with my care, love and support that only I can give him.
    I feel his trust, his need and his acceptance.
    I feel your boyfriend feels all of this and more.
    We are ready to begin this incredible journey that was given to us, thankfully us because we are strong, we are optimistic and we know we will kick cancers ass!
    Following in your footsteps.
    Ruth

  8. Thank you for your continued posts, I find them quite beautiful, moving, and meaningful. They evoke memories and emotions for me, so thank you. My thoughts are with you, as are my prayers. Just as there is beauty in struggle, so too there will be beauty in your victory. Stay positive and stay strong.

  9. Elana, I am so glad that you are doing much better with the port in place and that you treated yourself to a razor cut. I am also happy that a smaller needle helped with the lumbar puncture. I have gone through all of the same and know exactly what you are going through. Intrathecial injections are not fun, but you can get through them. I had a total of 12 of them and each one seemed to get easier…. not fun mind you, but better. You will learn the tricks and tips and you will be a pro by the next one. My favorite tip is to make sure you lay extremely still after each one for approximately one hour. The nurses at my treatments got so that they would sand bag me for that time. They were life savers!

    I had to laugh when you described how you would pull your wig off at people. I had a funny experience and would love to share it with you. My friends and I still laugh at it 2 years later!
    In the area where I live, it seems like they are always doing road work and have many traffic backups due to it. My daughter was here visiting and had gone out to lunch with her friends before I had to drive her back to the airport for her flight home. I had just lost most of my hair and had decided that I would go to the wig store to pick up the wig I had ordered while she was out. The beautician there shaved the rest of my head for me and I was very emotional about it. I was running late to pick up my daughter and of course ran into a traffic backup. I was trying to get around it and admit that as I went down a connector street, I was going a little faster than I should have been. Of course, I was stopped by a police officer on a motorcycle that I had not seen. He was not the most pleasant person I had ever run into, to say the least. He was, and this is no lie, about 5′ 5″ tall, rounder than he was tall, and his head looked like he couldn’t get his helmet off because his head was so big. (I really do think he had a “Napoleon Syndrome” type thing going because of the way he was acting…but that’s just my opinion.) His shirt was so tight on his chest that I thought his button was going to pop off and bust me in the eye. I couldn’t help but giggle as I seen him coming up to my window, and I don’t think he liked that because his first words to me were “you got a problem lady”. I couldn’t say anything, but I’m sorry trying not to laugh. Then he said ” you should be sorry, I can make your day hell”. That got me going. Now normally I am a not so loud and more of a polite than rude person, but my mouth (I blame it on chemo brain) got the best of me. I just looked at him, started crying that ugly cry, and said…. and this is a direct quote.. ” make my day hell…. you can’t make my day hell”. As I was saying this, I was pulling my brand new wig off my head and now more of a scream instead of a cry was coming out of my mouth. I said “you can make my day better, but you can’t make my day hell. I just got the rest of my hair taken off that chemo didn’t take, I just puked my guts out this morning, I am taking my baby to the airport to go back home across the country, and I just spent sitting in traffic for 30 mins for no reason what so ever, and you think that isn’t hell.” He just stood there with his mouth hanging open, unable to speak or stop staring at me. He was looking at me like I had two heads and was spewing flames of molten iron. I swear he took about 5 steps backwards. (My husband said that he probably thought to himself, holy crap what did I get myself into.) I wasn’t sure what he was going to do, so I just said, “can I leave now?” He didn’t say anything but he shook his head yes and I said, “well thank you, have a nice day, and be safe”. I then drove off with my wig sitting on the seat next to me and my pale, shiny head glistening in the sunshine. Of course, this all happened in front of the restaurant where my daughter and her friends were sitting , and of course they all saw the whole thing. OH GREAT!!!! what a wonderful example I set for them! I am such a bad mother…hahaha. As I sat in the car trying to reposition the stupid wig into somewhat of a “normal” looking hair do, I noticed people watching me from the windows. I managed to get my face to go back to a normal flesh color from my beet red embarrassed skin tone it had turned, and walked into the doors only to be greeted by high fives and applause from the people who had watched me from the restaurant. My daughter still teases me about this, but I did learn a lesson. Sometimes you just need to let it all out…. oh yeah, and watch out for motorcycle cops. So honey, if there is one thing I can tell you, trust yourself, trust your friends, do stupid things if you need to and chemo brain covers a whole lot of things. Heck, you can blame just about anything on chemo brain and people will forgive you. (wink wink). Sending my prayers for you and your boyfriend.

  10. Lisa Lesnikoski says:

    Elena,
    I feel very blessed to be able to have your
    words grace my world.
    Your vulnerability, honesty and raw truth
    humble me.
    Gratitude for your inspiration.

    I send you Love. & light on this journey of yours.
    I am with you!
    Thankyou for sharing your life

    Lisa

  11. Lisa Lesnikoski says:

    …. So sorry misspelling
    Elana…

  12. I have been praying for you. You are strong, beautiful, and intelligent. I love your positive attitude. You have blessed so many people by sharing your story.
    God bless you,
    Lauren

  13. Dear Elena,
    Your brain will come back, I promise. I had a different experience that gave me exactly the same thoughts. I was worried I would never be able to do anything intellectual, also probably would be dependent on my mother for the rest of my life. And those thoughts then definitely hurt much more than the physical pain.
    It is the medication and all your intellectual skills will be back and they will also be sharper for some reason I do not know.
    PS: Not that I agree your thinking/writings skills are gone by the way, as far as I see you write very well and touch our hearts.

  14. Marianne G. says:

    Prayers for you. Thank you for sharing ~ you are powerful!

  15. Just so you know … I would totally do the dramatic wig removal coupled with hissing if I felt the need to !! :) There are days.

    You are rockin’ this !! You stay in my prayers.

    Much love ~~~

  16. And that is the key — there is only so much one can process at a time. Sometimes we can function a week at a time; sometimes only hour by hour. I am a Hodgkin’s lymphoma (stage 3B – 8 months of chemo – 16 years out now!) and every word in your post is exactly where i was all those years ago! I felt every word in your post. Two things I can tell you – you will beat this and your chemo brain will go away :). You have every right to feel anything and everything you feel and it’s so therapeutic to spit it all out. I did not let people help me as much as I should have – but, those of us with strong, independent personalities have trouble with that…….and that’s okay too! Keep fighting the fight. One day you will be thankful for this hurdle in your life – sounds strange but the perspective it gives is like no other. Prayers!

  17. Carol Warren says:

    Hang in there Sister. You still have all your faculties, they are just moving a little slower. So thankful this time was better. Your boyfriend loves you and he wants to care for you. Just one more thing to be grateful for.

  18. Elena!

    I had a health scare this past year where I was staring death in the face.

    I got through it and so will you!

    Actually, I’m wishing you many years of Mojitos on the beach!

  19. Hang in there! Everything is manageable and you’ll get through. I was diagnosed in July. Finished my chemo in October and yesterday was my very last day of radiation. I never thought the day would come but it did-and I feel pretty darn good. Pulling for you-keep up the great posts :)

  20. Hello Elena,

    Just to let you know you are in the prayer cycle of the Franciscans – around the world.
    You can rest and heal in our hearts.

  21. Hi Elana,
    I “feel” privileged to be reading your words chemo brain or not!!! Also on a side note with
    the birth of my second son I got a spinal headache from the spinal shot I received before my
    c-section. It was the worst pain I have ever been in. I felt like my brain was beating against my skull which it was due to leakage of fluid. Anyway long story short I had to go back to the hospital and received a “blood patch” which miraculously , instantaneously restored balance to my fluids and the headache was gone. I have never experienced such dramatic results from modern medicine since. I literally had to be carried into the hospital and walked out a few hours later.
    Not sure if applicable in your case but thought I would share in case you get the dreaded spinal headache again. k

  22. Hi Elena,

    This is not intended to be diminishing, in the context of what you have written and described with searing beauty here. However, it seems to me that you are as they say ‘awakening to the eternal’. Simple. I have recently watched this short doco … and if you have time plus inclination … you might enjoy it, in a strangely reassuring way. This man asks the ordinary question, ‘Who Am I?’ and taught this for the rest of his life. There are a number of Western commentators on the video who have things to say that may reassure you about your purpose – re what you are going through and learning. I don’t know, but I thought it may put a different spin on why you’re feeling like you are somehow losing your agility with words, perhaps for very profound reasons … maybe you are discovering something much deeper within, beckoning from beyond that wonderful agility and skill you have developed. I’m only commenting here because you stated elsewhere that you are interested in the integration of East/West dialogue so here is a small offering : http://www.youtube.com/watch?v=_wuVIVMDOPc

  23. Hello you beautiful, strong, courageous warrior woman,
    If this writing is you with “chemo brain,” I absolutely cannot wait to read your words when you are off chemo. You are an astounding writer and inspiring spirit. I will be praying for you as much as I can and sending healing hugs, love, and light. Before I went in for a second surgery for a benign brain tumor, I went to several healing ceremonies and I believe they helped me mentally and physically. Do they have that kind of alternative therapy at the hospitals you are being treated at? And BOY! Do I know what you mean about steriods! I was the exact same way when I was on them pre-surgery. They made me nutty. But they also helped to keep me alive until my first surgery so it was all good. Thanks for being such an incredible inspiration to me and others! Much love and prayers!

  24. Steve gill says:

    Take care, Elana. One of my favorite students. You have a great dad …..take care, steve

  25. I agree with the others — your words are still beautiful. They are honest and raw.

    Thank you for continuing to share your brave story, Elana. Keep up the fight, but let go when you need to.

    *Virtual hugs*

  26. You’re making me want to splurge on the straight razor head shave as well. Three a weeks with disposable pivoting heads, even triple blades gets tiresome after a while.

    Oh, BTW…I think you are beautiful inside and out, and are connected to a source that cherishes you unconditionally.

  27. Hey Elana

    I think you are so strong for being so honest.
    Thanks for sharing your journey with us… I know it must be damn hard and at times you’re just like screw this, I can’t take this anymore… but I know you have a loving boyfriend and friends who have your back, just think of them and how much they want you to kick cancer’s a$$…. best wishes and much love <3

    Patricia

  28. AGHHHH!!!!! Chemo brain. I’m nearly six months post chemo and still. I feel like my brain is full big holes, like a slice of Swiss cheese. I play a lot of “Seven little words” and try to read a lot to fire up my faulty grey cells. Hang in there. I’ve added your name to the post-it on the back of my prayer card that I read most every night. And as for your clean, close shave, love it! I did love the feeling of warm water sluicing over my bald skull., but I am equally happy to scrub my pixie length hair. God bless you!

  29. I do not know how I found you or why I started reading your words and hearing about your life, but I am so thankful I have.
    I have a brother with stage four cancer and a friend with stage four cancer and many of my family members have died from cancer so I am thankful to know what they are really thinking and thought.
    Thank you.
    I am a survivor of something else that took my whole life and although I am alive and walking around for 68 years I am a survivor in my brain. Always looking carefully instead of carefree.
    Love from my heart to yours.
    Be what ever you need to be at the time you need to be it.
    Thank you, Maggie
    I will say the Holy Spirit rescued me. And healed me and showed me Heaven is real. Find Him.

  30. Your words are lovely, they convey everything I’m feeling!
    I had Velcro too! Shaved that off!
    Wishing you comfort<3

  31. Dear Elana,

    Thank you for your honesty. I can’t imagine what it’s like to be suddenly going through this. I loved the part about accepting help. In the most mundane things, I don’t like accepting help, so I can imagine how hard it is when your are so ill. Illness is out of our control, and loved ones seeing you through the illness probably feel helpless. Helping you in the smallest way is a way to deal with that helplessness. I know I would want to be “doing” something about the situation.

    Anyhow, besides that I think you still write so well! Your writing is always moving and resonates with some vulnerability of my own.

    Thanks again and sending healing thoughts your way!

  32. Kathryn Shimmura says:

    I read your post “9 Ways to Be a Spiritual Warrior” back in November and found it to be hugely inspiring. I’m wondering if, during all the mess of treatment, fear, illness etc., if there is anything that stands out from that post that is especially helpful for you now? I hate to ask the question when you are going through so much…but if you do have anything, I’d love to hear it.

  33. Thank you for sharing your beautiful thoughts, Elana. I am confident that YOU will kick cancer’s a$$ to the curb. We’re with ya!!

  34. It’s nice to hear you cherish the positives in your ordeal. For months I felt like a woman.
    http://clinicalposters.com/news/2013/1028-months-felt-like-a-woman.html

  35. Feeling for you, Elana. And pulling for you, too. Wishing you joyful moments to offset the struggles.

  36. Maybe this is all just God’s crazy way of giving you a parking pass. :) I picture everyone who reads this blog as holding hands together, with you. I hope it feels that way.

  37. I just feel…… for you. I believe there is no big truth no plan, just one thing in life you have to go through. You have the strength, there will be times of doubt and fear but you will succeed. At the end this is what life is all about.
    Wishing you all the best on your journey, thinking of you, Barbara (people now know you even in Germany :-))

    PS: I like your view of life

  38. Neysa West says:

    Thank you for saying it like it is! Going in for my 2nd round today ,your last post made me feel more confident. Also under the care of UCLA Dr,s, feel so fortunate. Please keep posting, will follow you every Tuesday. Sending positive vibes and prayers your way.

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