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I Don’t Want Any More Transfusions

windowEvery time they tell me I need a transfusion, I start to cry.

I understand why after the first one—after all, I made it through my first cycle without needing any. My hemoglobin and platelets dipped only a little below normal values. So I guess I thought I was superhuman or something. I don’t know.

Last Tuesday, the first week after my second chemo round, I got my blood drawn (every Tuesday and Friday, like clockwork). I was so sure my values would be fine that I told them to take out the temporary port access they place to draw blood. I had stuff to do! I didn’t have time to come back later after the results came back to get it removed.

But I got a call an hour later saying my hemoglobin was 8.7 (normal is 12) and my platelets were 26 (normal is 150). Come back for the transfusion, they said. But I didn’t want to come back! I had a whole plan for the day visiting my friends.  I ran somewhere private—the bathroom I think—and started to cry. I didn’t want to go back, but I did, dutifully. It took over 7 hours to get the unit of platelets and 2 units of blood they said I needed.

On Friday, the same routine. I got my blood drawn in the morning, and didn’t make the mistake of asking them to take the port access out. But this day was important. I really needed not to have a transfusion. It was the second day of a 4-day seminar on teaching mindfulness that I had been looking forward to for months (part of a year-long program to receive a Certificate in Mindfulness Facilitation from UCLA’s Mindful Awareness Research Center).

I got my blood drawn and went to the seminar. A few hours later, 10 minutes before my scheduled “treatment,” I called to ask if I needed a transfusion. They told me my platelets were 13, lower than they were 3 days ago, even though I had gotten the transfusion.

What??

I went back to my seminar to get my bag. I had to keep it together for a few minutes to tell the teacher where I was going. But when I did he was so kind to me, so understanding, that I could feel the tears start to well up in my eyes. I pulled myself away and told me close friend what was going on, but seeing the reaction on her face really made the waterworks start, so I ran out of the room, my hand covering my face because I just couldn’t deal with a bunch of strangers feeling pretend bad for me (“Aww…. I hope she’s ok”).

I’m going to tell you something, though. I knew I needed a platelet transfusion. My nose hadn’t stopped bleeding in days and the backs of my hands were covered in petechiae, the telltale sign of low platelets. But I wanted so badly not to miss my seminar that when they told me what I already knew I felt devastated, powerless, out of control.

Today is the following Tuesday, and right now I’m sitting in the treatment room, getting 2 units of blood. Driving to UCLA for my lab draw this morning I told my ride self-assuredly, “Don’t worry, I’m pretty sure I won’t need a transfusion.”

I was in the resident’s library when I logged into the electronic medical record and opened my chart. Hemoglobin: 8.8. Type and cross ordered. Two units of blood ordered.

I was supposed to meet up with my friends for lunch. I didn’t want to go back. I didn’t want to go back.

***

Photo by Zitona

Comments

  1. Hi Elena,

    I know you work in the medical field, so you probably know better than I do, but my levels were also always low after my chemo, but I was given injections. I got nuelasta for white blood and procrit for red. Maybe it’s a possibility?

  2. Elana, I know there are no words that could cure up the hurt you feel right now at having had to cancel on your friends and the so special seminar. I just thought I might humbly point out that every time you have had to cancel, you are buying yourself a great amount of future time with your loved ones. Probably doesn’t help, but you are great at re-focusing your viewpoint to a positive one, and I thought that perhaps I could help refocus it this time: Every time I go back for these remedial measures I am buying a great amount of future quality time with my loved ones (one day it will actually BE that future time, and you will not need to buy it any more).

    Please receive a great big hug from San Diego, CA.

    Marlene

  3. I just wanted to say that you are in my prayers/meditations. Love, light and blessings to you!

  4. Carol Warren says:

    It’s a pain in the ass isn’t it? Let the feelings flow, whatever you feel is natural. Just never forget you will make it thru this.

  5. Barbara Snow says:

    I feel for you and am sending extra love and good vibes to get you through these difficult times. Your friends will be there for you as well as all of us following your journey. Blessings.
    Barb in Minnesota

  6. “Only as a [spiritual] warrior can one withstand the path of knowledge. A warrior cannot complain or regret anything. [Her] life is an endless challenge and challenges cannot possibly be good or bad. Challenges are simply challenges. The basic difference between an ordinary [woman] and a warrior is that a warrior takes everything as a challenge, while an ordinary [woman] takes everything as a blessing or a curse.”

    • Wow, who are you to tell her this? This is about what *she* knows for herself, not what you think you know for her! Heavens.

      • Hi Dr. V, don’t worry, this is actually my boyfriend playing around, quoting something I wrote a while back (well, didn’t write myself, but quoted). He is kind of a know-it-all though :-)

        • OH, ha! Sorry! I recognize the Castaneda work and agree with it — if it weren’t your boyfriend, totally inappropriate, :D. Now I’m totally embarrassed but for your grace. Thanks!
          v

  7. Dear Elana, thanks for reaching out to us here on Zen Psychiatry. I am so sorry you are having to go through this. I am sending you light.

  8. Ruth Hannah says:

    Elena, I started following your blog only a fortnight before you started writing about the diagnosis and this journey. Even when at your most vulnerable, you write it beautifully.
    Sending you love, light, and blessings every day.
    Ruth in Australia

  9. Dear Elana,
    I hear your frustration and pain. Sending you love, light & blessings. You are in my prayers daily.
    Big hug…

  10. Dear Elana, I admire your courage and pray for healing pure light to help you heal in this difficult time. We are all holding your hand metaphorically speaking. Best wishes.

  11. I never had cancer so I can’t tell you I know what you’re going through. That would be a lie. What I can say is that I’ve had some terribly disappointing days in my life. Like the two times I went to the ER with severe abdominal pain thinking I had gallstones or appendicitis and was told, Congratulations, you’re pregnant in one minute, then the next minute, sorry, you have an ectopic pregnancy, and we need to take you to surgery to remove your Fallopian tube.

    Or the two rounds of IVF that were unsuccessful despite being told those fertilized eggs looked great.

    On those days, I refuse to hold it in, to be brave, or to be reasonable. I cry, scream, and curse at God, the universe, and everyone. It’s not fair and I don’t have to be the strong one. I let it out because I deserve to give myself the time to be angry and to grieve.

    So, just let it be. Let yourself feel. And don’t give a crap what others might think. And when you’re ready, on your own terms, then you can find your new normal again.

    Sending you lots of positive energy and thought!

  12. Elana – I don’t remember how I found your blog…Huffington Post I think… Regardless you inspire me. I have my own medical issue going on, exacerbated by a surgical error. Whenever I get really down I think about your posts and suck it up. No matter what I’m dealing with it is no where near what you and other chemo patients bear. So, thank you for being so open and letting complete strangers into your world. I wish I was as strong as you!

  13. Thank you for another powerful post today. Noting that you are on the mindfulness facilitation path, I thought I would remind you of (or introduce you to) another fabulous Elana.
    (I apologize if this is redundant but I haven’t looked at all of the comments to know whether or not you and your readers have discussed her.)

    Elana Rosenbaum was the first person I heard of who approached her own cancer journey and healing process with a mindfulness practice. And of course since then she has gone on to make that practice available to the public through her writings and trainings.

    Elana Rosenbaum
    Here For Now: Living Well with Cancer Through Mindfulness

    I took a mindfulness training course with her many years ago and was so touched by what she shared about her own challenging experience with cancer.
    I would encourage you to go to her website (if you haven’t already) and to download her meditations to listen to as often as possible.

    http://www.mindfuliving.com

    Elana, I want to say that, as a clinician, I am impressed and relieved by your courage throughout this whole process of painful discovery.
    I truly believe that the raw vulnerability you have been sharing in your posts may be a far more potent healing agent for your (and my) patients than any pharmaceutical you could have prescribed.

    My sincere gratitude and well wishes to you–always.

  14. you inspire me. stay strong

  15. Dear Elena, hang in there! It is beyond difficult to put your life on hold, especially a life that is engaged and vibrant and full and interesting. This frustration is a lesson in mindfulness like no other… I see you as a spiritual warrior, learning to navigate these obstacles with your heroic honesty and vulnerability. Spiritual warriors are allowed to complain and allowed to cry on the road to acceptance (not resignation) of the temporary new normal. I see you emerging joyful and triumphant, to share new wisdom with the world when you are healthy again. Love and healing light to you, and big hugs!

  16. Elana, you are far too young to be enduring this. I am so sorry, and send you “light” as someone else said above. Prayers included! My own brush with mortality took the form of a brain tumor at 39. The psychiatric components of the illness were very badly managed and interfered enormously with the healing. Your perspective in this blog is enormously appreciated. At the least, please know you are treating all of us with “zen” philosophies that make us all stronger. Much love.

  17. that is sucky ! sorry . it will be better .

  18. Will Elliott says:

    I want to thank you for sharing your experiences.

    I want you to know that I don’t “feel sorry for you.” Instead, I respect the pain and shittiness of your journey though, and I respect your willingness to engage it in the ways that you do. I cannot know how you are experiencing all of this… but I can imagine it is… challenging… overwhelming.

    For what it’s worth, know that a friendly stranger reads your words… values your story… and holds you in compassionate, prayerful thought. And certainly, the Holy in me greets the Holy in you…. and is glad for what you offer of yourself in spite of difficult times.

    Lastly… transfusions suck! But you know that already. Best wishes to you, always.

  19. Will Ray, MA, LCSW says:

    What koan are you working on? Is there not a Poet to be read? What better time to not-do, yet to practice?

    Where are these questions?

    A teacher would not gently remind that to be torn away from “mindfulness” is an illusion. She would what?

  20. Amy Rogers says:

    The number of people you have touched by this blog alone already makes you a superhuman. Stay strong. You’re in my thoughts and prayers.

  21. Hi Dear Colleague!

    I wonder if you could use erythropoieten to help keep your H /H up during the chemo?

    You are always in my thoughts! I wish I had carried a ukulele around in med school, although I did manage to sneak my guitar in a few times :-)

  22. Beth Martin says:

    Dear Elana,

    The New York Times had an article about a young surgeon at Stanford who has cancer and he found strength in the words of Samuel Beckett, “I can’t go on. I’ll go on.” Since reading that article, I’ve been repeating these 7 words myself in my life with cancer.
    I wish you all the best.
    Beth

  23. This update is just so sad. I can’t begin to imagine your reality, and the wild ride inside trying to process all your treatments, not to mention the endless waiting for medical updates. Blood transfusions sound extremely painful and scary.

    I hope you don’t need many more, Elana. I really hope and pray for the best regarding your platelets and counts…

  24. Betsy Garrett says:

    You are such a wonderful writer! This piece is beautiful in its honesty and lyricism. Thank you so much for posting in the midst of your pain.

  25. Hello Elana,
    Some times when i am sick, i look for small happiness in my life. Please don’t let any body feel pity on you. You are stronger than any one out there. You are my Role Model.
    I bet once you get done with Chemo sessions, you will be all sparkled like a rising star. My Blessings for you. Keep writing cause you are not alone, We are all with you. Stay Positive & Blessed..!

  26. Scott Larson says:

    God, grant me the serenity to accept the things I can not change,
    the courage to change the things I can
    and the wisdom to know the difference.

  27. I only just started to read your blog a few months ago, but I wish I could be there for you to help you in whatever way I could. You are so brave and courageous to continue to write. Believe me your message is helpful in many different ways.

    I will pray for you and hold you in the light. May the group hug from all your readers and followers lift your spirits and your platelets!!!!!
    Carol

  28. You are so couragious and inspiring. Thank you for sharing. Positive energy pours out of me for you. You will get through this.

  29. Hi everyone,

    Thank you SO much for all your kind comments. I just wanted to reassure people who were worried I wasn’t doing well. I wrote this post while I was getting a transfusion and was just so extremely tired of the emotional roller coaster of having my day unexpectedly disrupted by the process. It’s REALLY frustrating!

    But—a few hours later (after getting some rest), I felt fine. I don’t feel upset about it anymore. I’ve learned not to take my moods to seriously these days—the good ones or the bad ones—because they change so quickly. Same goes for my physical energy, which is up and down in a way I still haven’t learned to predict.

    But that’s life, right? So I feel the pain and then let it go as soon as it’s not there anymore.

    Thank you all for looking out for me,
    Elana

  30. I want to tell you that your post brought tears to my eyes. Thank you for sharing the rawness of your emotions. I don’t know you personally, but I do, indeed, care about you. And I totally get the “Aw, I hope she’s ok” thing with people who don’t know you or what you’re going through. Sending you much love.

  31. Dearest Elana –

    I don’t know you. I don’t need to. We are all interconnected beings. I gladly share my light, love and life force with you. Take as much as you need, whenever you need it. We all have more than enough. Be well.

    Much love,
    Karin (Oregon)

  32. Prayers (or whatever works for you) that this turns around and you have the strength to be your beautiful self, doing the things you want to do, being who you want to be. Strengthening you for that — we’ll all offer our unending energy for your journey. Blessings to you.

  33. Frances Nardia says:

    Hi Elena,
    I can’t add to the beautiful and empathetic comments, but I thought of another angle. You can think about the transfusion donors, wonder who they are, how old or young, think of the life force and health in their blood cells and how you are connected to it, think of all the cells that have ever existed from the beginning of time and how you are connected to them. Maybe that will help. Refuah shlema!

  34. Do you know Dr. Kam Yuen — Yuen Energetics? I’m guessing there’s an important fit between his work and your immediate task of kicking this thing out the door. Just a suggestion that you may want to meet him. He’s out there by you and his work is effective, period.

  35. Everything that you say carries so much beautiful weight. Thank you for not sugar coating this and for letting so many people share this with you, even in our small way. Lifting you up today!

  36. Wishing you the very best on your journey. Your writing is so honest and heart filled. I hope that you continue to get well so that you can bring your unique gifts that patients so need to Psychiatry.

    I want to communicate something from a place of love. I work in healthcare and reading your own chart in this day of EMR is grounds to be fired on the spot… even physicians… my husband is a psychiatrist. I felt an internal cringe when I read that. Feel free to take note of my comment and delete it. `~)

    Sending healing love into the universe for you. <3

  37. Dear Elena

    I wish you from my bottom of my heart strength and endurance, so you can tackle this task in life.

    It is in such situations, we often forget: We are spiritual beings living in a body, and thus may make physical experience, not people who make spiritual experiences.

    Love & Light

  38. Dear Elena,
    Thank you for sharing. Stay strong.
    Sending you love and light..

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