It’s been a few weeks since I’ve posted, and I had intended to write a longer, more purposeful article today… but just couldn’t. Sorry everyone.
I finished the worst round of chemo of my life about three weeks ago (think: hospitalized for neutropenic fevers, constant, unremitting fatigue and pain, walking around with no immune system for weeks, mouth sores so painful and crippling I couldn’t eat…
Anyway, I have recovered significantly since then, but unfortunately have not recovered enough to start my next chemo round. On top of everything else, I caught some virus a few weeks ago when I was visiting friends in LA, started spiking fevers up to 103, and had to cut the trip short and fly home early. Since then my white blood cell count (the immune system cells that fight infection) has been abnormally low, making it unsafe to start my next round of chemo.
It’s nice to have a break, but not so nice knowing that every week I have off now will be an extra week this shitty year-long process will be drawn out. I had though originally I would be done with chemo in late October in time for my birthday. Now I’d be glad just to finish before it’s 2015.
It’s been a long year—and, at the same time, it feels like just yesterday I showed up to the ER only to have my whole world collapse around me in the 48 hours that followed (Congrats, buddy, you have stage IV cancer!). My chemotherapy protocol is unusually long, and I’m starting to hear of people diagnosed with cancer after I was who are now done with treatment.
“What a second…” I wonder. “What about me? When will I be done?”
I want it to be over so badly. I am so tired. It is not me who shows up for appointments, who chit chats with the nurses, who dutifully double-checks the plan to make sure I’m getting the right drugs—it is my shell. My shell is there to keep going when the ‘me’ inside is lost.
I had a session with a wonderful massage therapist today (it was on the list of “things Elana really wants to do but does not have the energy to set up”). She was skilled, and very intuitive, and explained how unaddressed emotional distress can manifest as physical pain in the body.
I have had severe chronic pain since starting chemotherapy, and as she spoke I couldn’t help but hear the part of me that I push down below because it’s too much for me to deal with when I’m sick and tired and just need to make it to my goddamn 3pm appointment on time.
I haven’t listened to this part of me in a while. She says that she’s so, so sad and she needs to grieve. She is angry other people have “easier” cancers than she does, or don’t have cancer at all. She still can’t believe this is happening to her, and even though it’s been eight months, every day is like a new sucker punch to the gut. “What?” she cries out. “I have cancer? Are you serious?”
The other day this Elana started crying as she remembered being told when she was first diagnosed that she would never have children, and would go into menopause shortly after treatment started. She cried as if she were being told for the first time.
I have sixteen more weeks of chemotherapy before I’m done with the intensive phase and can move on to maintenance. Once I’ve recovered, hopefully a few months after that, I will be able to go back to the life I left. I will move back to Santa Monica, I will go back to work, I will hang out with my friends (and we sure won’t talk about cancer), I will date, I will move on with my life.
But there’s still the question of my other voice, who I ignore because her words remind of moments that are too painful to think about. How does she fit it? When will she have her day?
Brutally honest. When you’re ready, I’ll be listening.
Hey Elana, great to have you back. I finished my chemo in October 2013, after a big operation which means new eating and drinking habits for a lifetime (I’m 35)…. just wanted to drop you a supportive line and to say that your brain does funny things in times of stress – remember Psychology about repressed memories? Anyway most of 2013 is a blur now – my memory of it is very poor, very hazy… apart from some key and salient parts – you won’t forget those – but the daily slog, the pain and suffering will fade I’m sure. Keep going and all that will be left are memories. A big hug from a recovering Englishman on a European Road trip in Hungary xxxx
Dear Elana, I really want to embrace Each Elana, especially the one that’s hidden under disappointment and fear and that is fighting against other Elana! Once i read a brief book from cheri huber , it was about be gentle with ourselves despite circumstances. I hope it sounds good for you. Hugs, claudia.
Elana, thank you for speaking the truths that many of us dare not whisper. May we be free of suffering and the cause of suffering. May we be at peace and be filled with light and love. And may you continue this journey with grace. Thank you, Carly
Elana,
I can’t think of a more purposeful post, actually. Your words beautifully capture the journey of emotional, mental (black & white thinking; if only and acting as if) and physical distress. Your purpose is survival and the layers of grey that trudge behind us while we fight our good fight.
I also was diagnosed rather abruptly when I thought I was healthful & doing the doctoring I felt I was put on this earth to do. The existential crisis led me to a 2nd career as a licensed professional counselor…simply b/c I wanted to understand what is too surreal to process: how to be sick & how to help others on their journey. We both want to be well so we can get to the next goal & that is wonderful & good. What I am appreciating almost 3 years post stem cell transplant for incurable myeloma is how valuable & purposeful the middle ground has been. The writing & insight is coming through you, even when you don’t feel you can write your best… you are!
The quote that helped me most is that we are not humans (impatient, jealous. ..u do deserve to be done, too!) having a spiritual experience but spiritual beings having a human experience. You are a beautiful spirit!
Warmly,
Dr Emily
Stars In Your Eyes
Austin, Texas
Elana,
I have read your blog since the beginning of your illness. Your posts come to me in an email so I usually don’t respond since I’m not actually reading on your website. I decided to change that today and make sure you knew there are many of us out here that probably don’t comment but pray and send love and light for you daily. I am one of these people. Your story breaks my heart, as you are close to my daughters age, but your brutal honesty and strength inspire me. I went back to your original post telling us about your trip to the ER, when it all started. You are a very loved person, that is certain, and I totally believe 100% that you will beat the shit out of this cancer. You’re way too far into it to give in now. Let yourself grieve, and then put your armor back on. Anytime your sad, grieving self needs some attention ALWAYS give her that attention. Then go back to your fight. Soon, your different selves will merge together and you will reign victorious over this nasty disease. When you’re struggling, jot down a line in your blog so we know you need “extra” prayers and love sent to you. I enjoy every word you write and look forward to every blog post. Even when you feel your weakest, you are inspiring hundreds of people. I hope you feel better soon and get back on course to be finished with this treatment. Much love to you, my cyber friend. xoxo Susan
Dear Elena,
This journey with cancer is not often easy to share. You have shared your true spirit beyond the physical and emotional roller coaster. Thank you for your honesty, your depth of emotional vulnerability, and your ability to connect us to your authenticity.
Years after my cancer diagnosis, I still read the many letters of care and love I received, as a reminder of both my vulnerability and my courage.
Warmly,
Sonny
Sorry. Hope you have another appointment with the massage therapist 😀
Listening to someone fully awake and loving like Mooji may help. His videos and Satsangs are so easily accessible on You tube and live on Sundays. You could bask. I hope you do.
Sat nam. I bow to the truth, the essence of being.
Hang in there. It shall get better. Believe that you are stronger than the cancer and that this is your body and you are its commander. This is what I visualize when I get upset that I to have or hopefully had cancer. I shut my eyes and command all my healthy cells to mount an attack on the cancer cells and defeat this enemy.
Elena,
Thank you for your honesty and thoughtful posts. While I can’t make it better, I can tell you how strong, beautiful, and capable you are, and I know that from just reading your words. You will get through and be on the other side of this. I experienced a similar treatment that knocked me down and it took me months to get my life back afterward. However, I am stronger for it, and it is part of my experience that shapes who I am. Keep writing and doing whatever is therapeutic for you. And know you have many, many supporters.
Fortune favors the brave.
Elana,
You have once again captured the struggle so beautifully. I’m sorry you are having such a difficult time. I’ll continue to send thoughts and energy of strength and wellness to you.
Cheryl
Dear Elena,
I too have been flowing your posts from the beginning and each time I read your words and look at your smiling pic…my heart just breaks open a little more. I cannot thank you enough for having the courage to share this challenging phase of your life. You are sharing so much vulnerability and honesty…your spirit shines through every single time eventhough you might be feeling like a shell. I bow to your spirit and pray that every moment you find the strength to continue to put one foot in front of another, knowing that you have a big fan club praying for you every step of the way. You are so loved beautiful Elena.
Holding you in healing light, Caroline Sabi
I have been following your posts since the beginning of your difficult journey and want you to know that I am amazed by your spirit and have not stopped praying for you.
It’s remarkable how our brains protect us from devastating, life-altering experiences so that we are able to cope with everyday life; the down side is that we do eventually have to deal with the trauma. It sounds like your massage therapy session was a huge step in the right direction for you to recognizing your true feelings and begin the grieving processes.
I hope that you will continue taking care of yourself by doing more massage sessions or any one or two of the other things on your list of things “Elana wants to do”. Perhaps, ask for help from your family or friends to help you set them up, that way they don’t feel like such monumental tasks on your never ending “to do” list.
Wishing you all the best.
Elana,
I’ve been following your blog and am inspired by your courage, I’m keeping you in my thoughts and prayers.
Stef
Hi Elena,
You are on the down hill slope. Remember that!!!
k
Hi Elana,
That was a really, really good piece you wrote. I’m so sorry you have this kind of cancer with the nasty, debilitating treatment. Let’s just hope it works and that it will all be worth it. I don’t know if all the voices and feelings and parts of you will ever be perfectly integrated for once and for all. Rather, I think, all this stuff will keep coming and going . Sometimes very painful feelings are triggered seemingly out of nowhere, and sometimes there are long stretches of okay, or good, or even creativity and, (gasp) happiness. Though I risk making it about me instead of you, the only reference point I have for empathy is my own experience, so here goes- I was diagnosed around the same time as you. I have (had?) a nasty, aggressive breast cancer which stopped me in my tracks at the start of a new career as an OT. I lost my job which did not want to wait 6 months for me to be done with chemo and then some more time to have several operations. I did an experimental (looking successful) treatment followed by double mastectomy and will now need more extensive surgery because of some healing problems with the reconstruction. This whole year, I stayed home and basically did cancer.
What’s the point of this story? Elana, I’m trying to get there and hoping that somehow this ramble will be helpful to you. I feel pretty good right now. This morning I chose to watch The Chronicles of Narnia because the little girl looks a whole lot like the little girl I lost to cancer in 2002. Here’s the good part. I get a kick out of watching this little movie child smile and move and run around with my daughters teeth, face and haircut. Here are a few more good things: This year I hired an organizer to help me sift through a whole room full of junk and turned it into a beautiful livable space where guests can sleep. I decided that I needed to own a pergola for my unused, ugly cement patio, found the exact one I wanted and hired the same builder to make one for me. I go out there for coffee in the morning and it’s wonderful. Tonight I started making solar lights out of pastel colored mason jars to hang in there. I built a coffee table out of cheap crates and it looks just like the one on pinterest where I first saw it. Tomorrow someone is coming to fix up my daughter’s memorial perennial garden which is completely out of control. I have spent just about everything I earned in my first year of practice.
The point is, I guess, that :
1) Today I feel good, even though I am not out of the woods yet and may never be and still have some rough times ahead.
2) Somehow or other, my creative impulse has kicked in and is providing something to be happy and proud about and something I can control.
The bad stuff is not gone. Some of it will always be with me in one way or another, but not all the time, and not so bad that I can’t come out the other side. (Medication and therapy helps!!) but the good stuff is definitely palpable.
Elana, I know I’ve gone on and on. I’m sorry if none of it is relevant. I sincerely hope that some of it is. You seem to have a very good handle on who you are, how you feel, and what you need. That is an excellent start. I have faith that you will find your way and come out whole. In the meantime, I wish you a lot less pain and many, many joyful moments whenever you can find them.
love, Arlette
Hey Elana, what do you mean this was not a purposeful article? This was a wonderful post and maybe even one of my favourites from you.
It must be so tough to still be going through so much… pain… after so long. I simply cannot understand your situation because I’m not in your shoes. However, I greatly admire what you have done in the past eight months despite the cards that were thrown at you. What you have done in this blog and what you have presented in your guide is incredible. Your work reminds me that we have a choice to keep on living when there are seemingly insurmountable obstacles standing before us.
I saw my uncle last week and he had a type of cancer in his esophagus. He had radiation treatment last year (apparently, he could only have it once – any more would be life threatening). Earlier this year, he found out that the cancer was not eliminated and that it will kill him in due time. He just doesn’t know when yet.
He had some chemotherapy recently and the radiation damaged his throat; his voice is very raspy and light. He is struggling to get his voice back and was told that it might never come back. Apparently he needs speech therapy in order to build his voice back, like you would go for physiotherapy after a breaking an arm or a leg. One thing that he said really hit home.
He said: I don’t have to get my voice back. I’m going to be gone anyway, and it’s quite a bit of work to go through this speech therapy. But I don’t know how long I’m going to last. What if I last for many years and I can’t speak, because I gave up speech therapy? I don’t know if I can forgive myself if I let that happen. So I practice, each and every day on my own, hoping that my voice will come back.
You guys are so inspiring in so many ways. I pray and have faith for your quick recovery and the many decades to come of living a happy, meaningful life full of love.
Thank you for sharing. Your courage and wisdom never fail to inspire. I look forward to the day you’re back on your feet and all of this is behind you.
Just sending positive thoughts, a hug and peaceful wishes your way.
Elana,
I don’t know if this helps – – but when I learned I wouldn’t be a mother (my dream in life) I decided to try and be as kind and nurturing to myself as I would have liked to be to my child. ( It takes a lot of practice for some of us)
The fact that you hear from this other Elana makes me feel it is a voice you can listen to – her sadness, her grief, her anger, her feeling sucker punched – it is all so raw and real and shows her/your vulnerabilities. Hope you get to have another session of massage “therapy” (a little pun there). (i hope this isn’t offensive in any way – it’s not meant to be).
Hi Elana,
Your posts and your journey resonate so much with me. Im on a healing journey too and feel your pain, grief, anger, and loss as i do my own. You should be so proud of yourself for sharing your vulnerabilities and sadness in posts such as this. Its not easy. And although youve said you havent unleashed your grieving self yet, poats like this are a step in the right direction. Its very cliche to say things can only get better, but thats the hope you have to live for.
Sending you so much love beautiful lady.
Stay strong, but maybe dont if you know what i mean. Be weak and dependent because thats ok too.
Monica
Xxx
Hoping your immune system responds so you can finish your treatment. Beaming you peace, love and healing thoughts.
Fondly,
Barb in Minnesota
Thinking of you today, Elana. Positive thoughts, healing energy and peaceful wishes are being sent your way. Take care of yourself as best you can.
Sending you love and healing energy.
Thank you for continuing to write about your terrible voyage. Your family is always by your side!