When I was first diagnosed with cancer several weeks ago, I didn’t have much time to think. I was just trying to survive after getting punch to the gut after punch to the gut of bad news.
First I went to the ER thinking I had pneumonia, and was told that no, I had cancer. Then I was told instead of it being a more common, more relatively easy-to-treat type of cancer like Hodgkins or B-Cell Lymphoma, it was a more rare type of lymphoma (T-cell), with a worse prognosis, worse survival rates, and a much harder chemotherapy regimen that would last two and a half years instead of the six months I was expecting.
Then I was told the chemotherapy would make me infertile and menopausal, at 31.
Then I was told I might need a bone marrow transplant. The doctors asked me, “Do you have any full siblings?” I told them no, I didn’t, because I’m adopted. “Oh hmm…” they trailed off. “We’ll worry about that later.”
But then, a few days later, I got my first piece of good news. The bone marrow biopsy was negative, dramatically reducing the likelihood I will need a transplant. I tolerated the chemotherapy well in the hospital, did not become neutropenic, and was discharged after only a week in the hospital as opposed to a month.
Since getting home a week and a half ago, though—with the immediate adrenalin of the initial diagnosis wearing off—I’ve had plenty of time to think.
I’ve wondered, is this real? Is this really happening? Is this just a dream? When will I wake up?
I’ve wondered, what if I didn’t decide to wander into the ER that one night, and instead kept walking back to my car? What if, a few days later, I had left as planned for a two week road trip with my boyfriend?
I’ve been looking into lifestyle and alternative methods I could use to help beat my cancer, and have done some research on nutrition. I’ve read stories of people who say they cured their cancer with nutrition alone. But then I wondered, does this mean I caused my cancer with bad nutrition? Was it those occasional pepperoni pizzas? The diet cokes? The Frenchies frozen yogurt obsession?
I’ve wondered, when did that first cancer cell run amok? If it was really six weeks before my diagnosis, which the doctors hypothesize, it would have been when I was in Florida at the annual conference for the American Board of Integrative Medicine (ABIHM). I can not think of a time this past year when I was more happy, more excited about my work, more positive about my life, eating healthier food, or building amazing relationships so quickly.
So I wondered, did my body just not have a chance against this thing? If it really grew from a single cell to an 18 x 11 x 7 cm mass in six weeks, was there really anything I could have done to stop it? Can I forgive my body for failing me? Can I forgive myself?
When I was told the diagnosis was T-Cell Lymphoma, I wondered, What if I die?
While I tolerated the chemo well in the hospital, after getting home I was crippled with massive headaches from the lumbar puncture for the intrathecal chemo, then fatigue from being anemic, then flu-like symptoms when I did finally become neutropenic (a normal white blood cell count is between 5-10—mine was 0.87).
I’ve wondered what you would all think of me if you knew, despite the positivity in my recent writing, that at my worst moments I’ve cried because I’ve been in such physical pain, that I’ve cried because I’ve felt sorry for myself.
When a few people (a very, very, small minority, mind you) came to me with sarcastic and hurtful comments in response to my blog post (telling me that I’m entitled, overprivileged, that I didn’t deserve the excellent care I received, etc., etc.) I wondered, why are they misunderstanding what I’m trying to say so much? Do they know each of their words feels like s sucker punch to the gut? That it almost hurts worse than the cancer?
When so, so many more people came forward with loving and supportive messages—so many, that it totally blew my mind—I wondered, do I really deserve all this? All I did was get cancer. What will it feel like to accept all of this love, knowing it is so vast that there is no way I could possibly reciprocate it?
When I became neutropenic even though I was determined not to, I wondered, how much control do I really have over any of this?
I’ve wondered, could I write my own medical marijuana prescription?
My hair started rapidly falling out a few days ago, so my boyfriend shaved it off for me. Even the stubble was patchy, so we went straight for the razor shave. I’ve wondered, should I just rock my bald head? Would I feel proud to do that? Uncomfortable? My freshly-shaved bald head is pretty pasty, by the way. Baldness is also surprisingly cold.
(P.s. – If I get some balls, I’ll post a bald photo).
I’ve wondered, when I finally get to start surfing again, will I suck? (The PICC line in my arm to facilitate chemotherapy and blood draws makes any water immersion, especially surfing, a big no-no—think instantaneous bacterial blood infection).
I’ve wondered, should I really have shared my diagnosis on the blog? Can I really fight this fight publicly? That “Love Is…” article poured out of me with almost as much necessity as an exhale. So, I wonder, did I really have a choice?
I’ve wondered, will this experience change me? How? When? Am I changed already?
***
Image by Vinoth Chandar
Ellen Swercewski says
I just want to say that I love that you wrote this piece and that you blogged about your cancer. There are a few people who are only happy when they can see the negative in anything they hear or read. Those are the ones who need to be ignored because they bring negativity into your life. I am so happy that you have found a way to talk about your cancer, your feelings and your experience. That is what is going to help you and others as well. Everyone deals with difficulties differently. Thank you for your blog.
DonnaB says
I found this article and the Love Is… blog amazing. As a health care professional for 34 years I was shocked last sept when I found out I had cancer. Had to be strong for everyone though. thank you for your insight and honesty – your words have echoed what was and still is in my heart but I was afraid to acknowledge. I wish you the very best and cant wait to continue reading about your journey! God Bless
Jennifer Ulie-Wells says
I find you beyond inspiring. I have never been diagnosed with cancer, but I know many who have. As I read all of your blogs, I am inspired by your courage, bravery, and your amazing uplifting attitude. In your last blog you asked so many questions of yourself that I imagine I would as well, but I find myself reading your words and then asking myself, “Wow could I be that strong, positive and upbeat? And am I worthy to read such amazing words from another going through such a challenging journey?” I encourage you to keep on just keeping on. As you said, it happens when we never think it would, and if not this struggle then perhaps something else is weighing down someone else. We all muddle through this life together, but it is far better to muddle knowing there is such light as is shining from you. We are all so lucky to have your inspiration, so thank you. Lots of positive energy sent your way.
PS. Bald is sexy especially on women! No fear!
Courtney says
Hemingway once said: The world breaks everyone. And after, some are stronger in the broken places.
The hardest thing for us medical-types is not having the answers, to not know why. I’m so sorry you are going through this. No one deserves pain or fear. Please know your courage to share your battle is encouragement to those fighting their own battles; be it cancer or something else. Love and strength are contagious. When we share what we have, we get back what we need.
Stay strong, keep fighting. Sending you healing energy from Oklahoma.
Tonya L says
Well said.
Don Livingston says
Elana:
Hoping for a speedy recovery.
I met you @ Peter’s Grandmother’s 100 Birthday Celebration in June. Having known Peter for most of his life, and to see him so happy and proud, made me feel as if you had done something to him in a very special way.
It was an honor meeting you and your family. Don’t stop playing the uke……., music is healing, not only for the soul, but for the spirit as well.
The very best to you, and again for a speedy recovery.
Don Livingston
Kelly says
I couldn’t have said it any better Courtney. I was inspired to sign up for this blog because of Elana’s “love is… ” entry. Elana Is an inspiration and I will be another Oklahoman pulling for her in her journey.
Julie says
Thank you for sharing your story. I had Hodgkins Disease in 1984 when I was 18 years old. I regret that I didn’t record my thoughts and feelings during the diagnosis and treatment process. I hope that you will continue to share your experience with us as you bravely fight this battle!
Lesa Hanson says
I think you are honest, real, and very brave. Your strength is amazing. Ignore the negative people and comments. They have much to learn. You bring an incredible first person perspective to having cancer. One which I have seen only in rare circumstances, despite being in the medical field for over 37 years. My wish for you is to not only beat this cancer, but to educate us to be better people. You sharing your feelings and experiences are life lessons for all of us. I thank you, and will continue to pray for you.
Allie says
Do NOT let others negativity bring you down. You deserve every bit of excellent care you received and anyone who says differently is simply evil. You are a strong woman and you need to forget the negative people because they simply do not matter! For every negative comment you will recieve so many positive! Remember your health is the most important and there are so may positive people behind you who are supporting you through this journey! Bald head or not you will be beautiful and your hair will grow back, I’ve heard it even changes color when it comes back! Keep calm, and carry on…you WILL beat this!
Melissa says
I am truly inspired by your bravery. I love your blog. I will be praying for you to kick cancer ‘ s butt!! Thoughts and prayers from Houston , TX
Amanda Ryden MD MBA says
Showing your ‘soft underbelly’ takes courage and shows your humanity. Another writer did this in her book, Pastrix, a good read. Another good read I recommend if you have not yet read it is Proof of Heaven by Eben Alexander, a neurosurgeon who had spontaneous E coli meningitis, was in a coma which past day 4 has 97% mortality, survived and woke on day 7 and not only that survived intact and, I have to agree, all of this for a reason. His journey while in a coma is amazing. Your journey and your willingness to share it is amazing. Hang in there, I am sending good vibes and praying for you.
Barry David Butler says
I have Marginal Zone, Nodal Non Hodgkin’s Lymphoma and decided to go the Raw Foods, Juicing and Anti Cancer Supplement Route.
I wrote a song about a dream, brain cancer and a cure.
Check it out below….
https://www.youtube.com/watch?v=20Tt4e2lUVI
I can be heard at barrydbutler channel on youtube
Barry Sebring, Florida
Carmen Lindsay says
Hi, please continue to share your experience. It will change and touch someones life somewhere around the world. I live in Bangkok, Thailand and I am following your story. Now I’m one of those people wishing you all the best. I’m sure you know, there are those who have nothing good to say, dismiss them, don’t let them occupy space in your heart and mind right now. The human body is perfectly imperfect. Let your feelings be what they are going to be. You are truly beautiful. You’ll have good days, bad days, why me days. Give yourself permission to feel and do whatever you’d like. Who cares what anybody says. Love yourself always. With Metta Carmen
Lori says
Yeah! Who cares what anybody says, LOVE YOURSELF ALWAYS! LOVE this post!
Kathleen says
Dearest Elena,
Again, your words make me cry, with awe and gratitude for your tremendous, beautiful, vulnerable heart. Yes, you deserve every bit of excellent treatment you’ve received and will continue to receive. You deserve all the vast love and support. You’ve already reciprocated, more than you know. This blog alone has helped so many people. I’ve been catching up on all your blog posts. They are amazing. You are amazing. Your strong, steady, vulnerable, healing, helpful, honest self shines through every word you write. Yes, you’ve already reciprocated. You are receiving all this love and support and excellent care because this hurting world needs you here! You are a natural healer. Perhaps this cancer journey will make you even better at it.
Denise says
Kathleen, you echo my thoughts almost exactly. I have read many articles on the internet and never felt compelled to comment until now. Elena, you will survive this. Mind, body, spirit and soul. You MUST. You credibility exceeds the printed page of an 11×17 sheet of paper fashioned in the style of a diploma bestowing two simple letters, M.D. ; and whether you think so or not, your name is written in the memory and mind of your maker. He will make you firm and He will make you strong. Feel better soon.
Beth says
Hi Elana,
I find your blog to be inspirational. Thank you for sharing your story with us. Please ignore anyone who puts you down or says your over privileged. Keep sharing!
Sending payers your way,
Beth
Camila Campos says
The power of sharing! It seems you have started a revolution. Now let’s fight!!! Love and healing from us going your way 🙂
HOLLY DANIELS says
Dear Brave Elana,
Cry. Breathe. Let yourself feel all of your feelings, including feeling sorry for yourself sometimes. You’re going through a very difficult time, and there is nothing you can do that is “wrong.” Lean in to those who can hold you while you cry and laugh with you in the catharsis afterward. You are an amazing being and your light and caring shine through your every word.
Blessings to you always,
Holly D
Ashley Cornish says
Elana,
You are an inspiration. I started my own blog in July 2012 after my fiance was diagnosed with Ewing’s sarcoma. I, unfortunately, can relate to the negativity you experienced as a result of a blogpost. I experienced the same, albeit in response to a different subject. I now liken that negativity to a general lack of understanding and empathy. Those who haven’t struggled with the complexities of a cancer diagnosis may not be empathetic to the difficulties it brings. We must realize that each of our experiences as either patient/spouse/caregiver/family member are unique and may conjure different emotions. I think of you often and am sending well wishes your way from the frozen north. And, please do post a bald picture. I am confident that you will be just as beautiful, your spirit certainly is!
Ashley
Jennifer says
Hi Elana, I’m so sorry that this is happening to you right now. But thank you so much for sharing. I too was diagnosed with lymphoma (follicular) during my anesthesia residency at UCLA. I have been going thru treatments for the past 12 years, I’m tired, but I’m still here. You are such a wonderful writer, and you’re able to express things that I’ve thought along the way. I wish you only the best, and I look forward to your blog. Know that this is biology, and nothing that you did brought this on. Easier said than done, I know, as all of those thoughts have gone thru my head a million times. Take good care. Rest lots. Sending lots of positive energy your way.
Sharon says
I can never remember who wrote this poem but what you wrote reminded me that great doubt is critical for waking up … and I wanted to say thank you such a lot for writing what you do – and continuing. You are beautiful and august Elana.
Antigua Cancion (Old Song)
Each of us caries in our chest
A song
So old, we don’t remember
If we ever really learned it
Some night
Between the murmurs of fallen wishes
Our lips surprise us
When we utter this song
That is like singing
And crying
At once.
Sarah says
Elana:
Thank you so much for sharing your story with us. Ever since I came across your article “Love Is..”, I have not stopped talking about you and your blog to friends and family in Canada and Italy.
My dear friend who had lymphoma would have absolutely LOVED following your blog for support and inspiration. There are very few people in this world that come out and talk about problems in their lives in such an authentic way. Thank you for being so transparent and teaching me a beautiful life lesson.
I had super long black hair but just cut it in December – I would’ve sent you my hair to make a wig. You could’ve rocked some Canadian hair in Cali 😛
Bald head or not, you are absolutely beautiful and a huge inspiration. Thank you for being you. Sending positive vibes and love from Toronto, Canada.
Andy says
Hi Elana,
A loved one of mine is also affected by cancer, lung cancer, which has very low prognosis. I want to express my gratitude for your writing — it is very inspirational for those of us fighting the same battle, a good battle. “Anti-cancer” is a very good book written by an MD PhD who was also a cancer patient, with great evidence based research and literature on alternative and complementary medicine in terms of enhancing our immune system to fight cancer. I send my warmest wishes to you as we fight this battle together.
Christy says
I am humbled and very inspired by your bravery. Whether or not you think you are worthy of such a sentiment, please allow me to say that I believe you are! And you deserve to be loved and supported and encouraged by your readers – if not now, then when, really?! Thank you so much for sharing… Wishing you peace, strength, and healing from Connecticut.
Pam says
You are so beautiful. I think of you often, so thank you for sharing your journey. I am inspired by your amazing strength. Sending love and positive vibes your way everyday.
Pam
Jen says
Hi Elana,
I ran across your initial piece on Huffington Post and I was completely blown away and in tears. How brave you are. I now follow your blog and I continue to keep you in good thoughts as I keep up with your progress. I think it is admirable that you have blogged about your journey.
sally says
Thank you for such an honest article. It helps all of us who have a loved one with cancer. I read your posts to my husband who has lymphoma as well. It broke our hearts to shave his beautiful hair but we felt empowered at the same time. I hate cancer and I hate that we wake up and hope its all going to be ok. So many people do not have to wake up to that every day. But We do and and We fight this enemy… IT can not take our dignity or our love. You are beautiful and you are loved. I pray that God holds you and heals you though out this entire process so that You can heal more people and do so for many many healthy years. As my husband says….he prays that he does not waste his cancer. So please know that You have been added to his prayer list – that there is a bald headed man on his knees in prayer every night- fighting the fight. ps. And he has done really well so far I might add.
Leslie Blythe Miller says
Yes, you should share your experience. It helps people, and will help you through the process. I have just finished breast cancer treatment, which is nothing compared to your diagnosis. I went through many ups and downs and realized how many good friends I have. They got me through this. On a lighter note, I did shave my head as well and managed to “rock” the bald look. I was told I have a beautifully shaped head! Who knew!? My hair is coming in SO soft everyone want to touch my head. Now, I love having short hair.
The whole process felt long and arduous, but I feel like I have become a much stronger person and learned a lot about myself. I definitely feel different about everything. Things that used to bother me, just don’t anymore. I am not longer afraid if anything, including the dentist (I went today and kept saying – “This is nothing”).
Some days, I felt scared, angry, upset, etc. I needed to be able to let myself feel the way I felt; not to try to mask it for other people.
I am terrible at writing (I’m a food blogger), but wanted to say how much your post meant to me. Take it day by day, and keep writing.
Chris Weekly says
Thank you for sharing so openly.
Welcome to the club nobody wants to join.
Please read this, and reach out to me personally if you’re able and willing:
https://www.chrisweekly.org/2013/03/22/welcome-to-the-club/
Pat Kahn says
I so appreciate your sharing your journey with us. Whether one is dealing with cancer or a chronic disease or another of life’s stomach punches, it’s so important that we share our journeys – both the good and bad. We all grow in the sharing.
I admire your honesty and bravery. And your bravery shines clearly even in what you describe as your worst moments. Though we’ve never met, my heart is but one of the many that hold you close. We’ll laugh with you, cry with you, hope with you and celebrate with you as you meet each day’s challenges. And I’ll keep you in my prayers.
Deborah Penner says
Thank you for not disappearing … for sharing your story here … it is powerful and life affirming and filled with hope. Blessings to you … There is a well of deep courage in you … the only thing you have to do is breathe into whatever moment holds … nothing more … nothing less. just that. Much love to you,
madge says
Once again, thanks for sharing and keep writing even if only for yourself. Thank you for saying the things you did about forgiving yourself and your body, definitely my challenge this week.
Breathe, feel only the love, and fight back with that love.
It is so new to me that it is hard for me to say…..I’m a cancer survivor and so are you!
tj says
I’ve often said “God doesn’t give you anything you can’t handle”.
I don’t go to church, don’t pray before bed, but I do believe in that. You’ve got the tools to handle what life throws at you and it may take some searching in the toolbox, which is what you’re doing now… but you’ll find the right tools and come out of this just fine.
Shelly West says
Please don’t listen to the negativity. I was hit with it double hard when I had AML, and found that shutting out the negative and holding onto the positive people in my life was the key to being stress-free. Please keep sharing your story, if only for your own peace of mind.
Monica Parker says
Dear sweet Elana, I don’t know you but I love you. Your boyfriend loves you. Everyone above has already said what was on my mind but I want to reiterate one point, You do have the right to feel sorry for yourself…. you are holding that card, it was dealt to you. Now go buy some really col hats because I know you’ve got to be cold, I’m in Hawaii & I’m cold, lol! But when it warms up rock the bald if you feel like it! I’d definitely get the medical marijuana… I’m considering asking my doc for it after 11 trips, mostly neurologists, since this past June and no “fix” to BP crashes, unconsciousness & seizure. It can’t hurt, but you may want to stock up on some good cookies 😉 I’m adopted too maybe we’re cousins 😉 Keep writing, write every day! Aloha~ xoxoxo
Kyla H says
You are a beautiful soul full of light. You have every right to feel the way you do and to ask yourself all of these questions. If you can, try not to focus on the one about where you might have done something to cause your cancer. For whatever reason, this has happened but what matters is right now, what matters is that you keep moving forward, day by day. Allow forgiveness to come in where you need it and focus on healing. Love & light.
Angela says
Hi Elana,
I feel privelaged to share your journey to win over your cancer. You do have the right to feel sorry for yourself. You also have the right to be angry if you want to. I am a critical care R.N. Having said that I want you to hear this: YOU ARE NOT RESPONSIBLE FOR YOUR CANCER!!! Good luck & God Be With You!! I will be following your story as much as you choose to disclose. Take GOOD care of yourself.
Brenda says
I’m a 41-yr-old two-time cancer survivor and I find your posts truly amazing, honest, and empowering. Cancer brings out the best in some and the worst in others. Surround yourself with positive energy and don’t listen to the negative people. (Easier said than done, i know. ) Keep telling your story as you need to and we will continue following it and pulling for your quick recovery every step of the way.
Alison says
OWN YOUR BALD! PAINT YOUR HEAD! WEAR NOTHING! WEAR A HAT, A WIG, A SCARF, AN OVEN MITT! Fuck cancer! Do whatever makes you happy!
But don’t write your own medical marijuana prescription. Nothing worse than risking cancer treatment in jail!
Courtney Lee says
Hahaha. Well said Alison.
Moira says
Your oven mitt comment made me laugh out loud. Now why didn’t I think of that (5 months post chemo and rocking a pixie as we speak).
Sandra Keros says
Elena – a friend who survived colon cancer who is helping me with my book sent me your original article and it brought me to all-out tears. You are a truly gifted writer and blessed to have so many loved ones around you. Please keep writing!
Although I haven’t had cancer, I’ve witnessed it up front and personal with my own mother. And in my experience of overcoming painful fibromyalgia, I know extremely well what it is like to have one’s illness misinterpreted and success resented. It’s been 8 years since I’ve suffered and I’ve learned to recognize the pearls within the phenomenon of dis-ease.
One of them is that it’s easy to personalize others’ cruelty or willful misunderstanding/intolerance and see it as as unjust and hurtful. It can be really easy to live there longer than anyone of us would like to admit.
But I’ve also learned that even though it seems incredible, sometimes people don’t realize the true consequences of their harsh words. They say and act without really thinking first. Reframing such unnerving negativity can be tremendously liberating. For me, it healed my pain permanently.
Perhaps these commenters can be pointing the way towards the very place in you that is an opportunity for healing. It’s the hurt that forces you to dig deeper to see your value and self-worth, to love yourself more unconditionally. Your sharing your experiences so soulfully gives others who are thirsty for your inspiration the strength to do the same for themselves.
Negativity will always have it’s chance to be seen and heard and felt, but you can choose YOU over it. And your writing allows people to come together to support you while affirming their own self-beliefs. Good and bad is all part of the journey. You choose to highlight the good and the strength and the vulnerability in your situation and I really appreciate that.
Thank you again for sharing your incredible journey. I think you’re beautiful and brave and can’t wait to read more of your writing!
Carol says
Thank you for your gifted writing and your beautiful, open heart. That you were aware of the attentiveness and compassion of those attending to you instead of being self-consumed in those initial moments is amazing to me. That you shared with us is a blessing. I am lifting you up in spirit and those who are near you will lift you up quite literally as long as you let them. Be strong – I hope you continue to share your journey.
Megan says
Please continue your blog, to continue to put your feelings and experiences out there is both therapeutic for you and raises awareness of what cancer patients go through. I had a blog which I kept as my baby son was diagnosed and went through treatment for Leukeamia. Like you the treatment was long and hard and I found the blog a wonderful outlet.
I wish you all the best and look forward to reading how your kicking cancers butt very soon!
Megan x
Madhavi says
Dear Elena,
iam touched by your honesty and i love reading it. I hope you will get well very soon. Can´t wait to read more from you. You are great!
Love,
Madhavi
Doug Stoltzfus says
Dr. Elena,
Wow. My heart goes out to you. I’m a recovering family physician who quit in 2006 from ‘burnout’ with major depression. Our medical system is broken in so many ways which is why I ended up quitting back then, as it was killing me physically and emotionally. But enough about me.
Your first article touched me deeply about your diagnosis and treatment plan and initial treatment. My younger brother was diagnosed with CML at the age of 21 back in 1986 and received a bone marrow transplant back then when it was actually still kind of experimental. Had to fight with insurance to get it covered as a result, but he’s alive today, thank God, having last year celebrated 27 years of being disease free. But during the course of his treatment I saw firsthand the effects of how he felt when his white count dropped to *zero* among other things. It’s no picnic.
And I’m blown away by those who made judgmental comments about the care you got from your caring colleagues. They can be as jealous as they want. Give me a break. EVERY profession has its perks with special access to different things that others don’t have, and in medicine, it’s things like this. It’s a real blessing in times of crisis like yours, and IMHO it’s *nothing* you need to apologize for. I’ve needed lots of medical care through the years, and have never hesitated to use my professional networking connections to grease the wheels for myself. You and I put in a heck of a lot of years of grunt work and mega thousands of dollars worth of educational expenses that others have not, and if this is something it gets us, then so be it. We’ve earned it.
That may sound cocky, but I’m actually a very humble person. But I also realize there are things in life worth standing up for, and for which one need not apologize. So don’t let those harsh words bother you in this instance. Folks are simply jealous of the access you have to preferential treatment. They don’t realize that physicians are *always* going to treat other physicians on a little higher plane than other patients out of professional courtesy.
I did lots of mental health care in my primary care practice, and as such I realize how hard it is to find oneself on the other side dealing with your own feelings and to not diagnose yourself or judge yourself. It’s just SO hard to turn that part of ourselves off as docs. My heart goes out to you as you go through this that you may be able to just be a patient who can be taken care of and have your needs met, and may this blog be a true means of catharsis for you.
I for one look forward to walking this journey with you and holding you in my thoughts and prayers that true healing might come about.
Warmly from a very chilly Chicago,
Doug
Caitlin says
This was such an honest and beautiful post, so thank you. I appreciate you sharing the negativity and doubts and the self-pity – these vulnerabilities are so natural, but we often don’t share them for fear of appearing negative or ungrateful. It’s good to be positive and declare a fighting stance, but it’s normal that you will have low times – and those low times are the challenging ones to share. It will hurt more than before if people react in mean spirits to this post because you’ve exposed your softer self, but ultimately it strengthens your connection with others. We all have times where we cry for ourselves, get genuinely angry at the unfairness of it all, and just want to complain about the crappiness of life whether it’s reacting to chemo or breaking a heel on the way to work. It’s ok to have a cry and say life is unfair. It doesn’t make you terrible or any less grateful for the blessings you do have and it won’t jinx your recovery.
I know I can’t speak for all your readers, but from me I say – please don’t be afraid to show the ugly parts. If I know you experience the ugly parts, and yet still find you to be an admirable and inspirational person then I don’t feel so ashamed when I’m going through the ugly. It’ selfish of me to ask, I know, but I sincerely mean it. This post was beautiful because you were wondering and worrying and admitting to feeling weak at times.
You seem quite a positive proactive person overall, so be kind and let yourself indulge in some self-pity and doubt once in a while. Then have a nap, and wake up determined to battle on and be positive again. Thank you again for sharing your experiences – it is greatly appreciated.
Siobhan says
Photos or not, Girlfriend, you have balls!
Now you have one less thing to worry about. 🙂 Cheering for you in Chicago!
alex says
thank you for sharing this. i needed to read it. here is a video to watch and listen to (you can look it up to read, too, if you want/need). theres a lot out there on the internet and in the world, but this is a good one that i hope helps you.
https://www.upworthy.com/having-a-bad-day-heres-46-powerful-things-you-should-really-hear?g=2&c=ufb1
im struggling with…im not even sure what, yet. and like you, i have all those varying thoughts and they are destroying me, despite all my best intentions and practices and…its so very exhausting. im adopting a “duck and cover” survival mentality until i get through whatever this is. i make sure i take care of myself and find safe places for myself to go through what i need to go through.
there are no recipes, no answers. that’s really hard. i enjoy your blog and ive missed seeing it. you are genuine and goodhearted. i dont know you, but i can feel that easily and i hope that you have peace through your struggle. i hope that when youre unsure, you have support. i hope that when you dont know what is happening and youre scared, you still know that there is hope and that this will pass.
reading this helped me by giving me validation. yours is an extreme example and mine is, too, but the pure humanity of your post reached out to me. you put to words feelings i have about myself and my situation. connection is important to me. sometimes its all i have to buoy me through. its a lot to work through, any struggle. its hard to know what to say and i dont like the internet sometimes because it forces a certain disconnection. the video is better at saying a lot of things that might help you feel better. whatever it is you need, i have hope and confidence that you will receive it. i have asked others to hope for me when i cant see it. so, i will say to you that i have hope and positivity, confidence and peace for you. there is a place for you that is good and if you dont think youre in it, i will wait for you there because i have seen you there and i empathize with the complicated struggle you are enduring.
Arwa says
Anything I want to say to you will probably be cliche. I just want you to know that you’re an inspiration to me. You’re on my mind and in my prayers. Sending you love from Cairo.
Nat says
You were brave posting the article on the blog and facing the illness with that positive energy. I am sure you deserve all that love that has been sent to you. Hope you get better soon. I’m sure you will 🙂 Sending love from Spain!
Amy says
Get all those questions and feelings out, I say. You are dealing with life changing news, and you are doing so bravely. All the questions you ask are valid and real and it’s OK that you had a few moments of self-pity. Getting it all “out” is the only way to move forward. You are changing and evolving in ways you cannot see yet. Be strong and know love and prayers are being sent your way.
Moira Savel says
Hi Elana – all your questions and ponderings are very normal and, at least for me, very much part of the process. And you do need to constantly process all the information being thrown at you and all your emotions. Even though I am now done with the heavy lifting of surgery, chemo and radiation, I sobbed uncontrollably recently (in the middle of my work area with many witnesses) when someone threw a sucker punch at me about my work performance, related to my ongoing problems with chemo brain. The tears are also part of your healing process, so let ’em flow.
As for your beautiful bald head, embrace it. I got a wig and wore it once. I wore hats and scarves throughout and as soon as my stubble started coming in, I wore nothing. It was the most empowering thing I have ever done. If you find me on Facebook, you can see my “Bald is beautiful” album where I posed with all my bald family and friends. Whatever you do, do what makes you happy and comfortable.
Finally, keep writing and sharing and being honest. It helps you, it helps those you love and it helps strangers like me from Elgin, Illinois, who wish you love and healing. I’m praying for you, sweetie. Take care.
Lori says
Ignore those negative comments and focus on the positive. Praying for you.
Thank you for sharing your story.
Marti says
I was hoping you didn’t read the negative posts on your article. I myself only responded to one of them, but I was left pondering all day what would make a person accuse you of being entitled? Entitled to cancer?? Yeah, right. I came to the conclusion that they were jealous of the fact that you felt love and concern from so many people. I think they were trying to hurt you, and that told me that it’s no wonder they’re jealous because I’m sure they do not have many friends with that kind of black heart and dark soul.
There are many horrible things about getting cancer and dealing with everything that comes with it. There are also, amazingly enough, wonderful things that happen on your journey as well. Have all the self-pity you want to – that really is something you are entitled to. Enjoy the moments when you feel decent. Keep writing to tell us how you feel – get it all out there. Reach out to others who have cancer, who have recovered and draw from their strength. Likewise, give those battling the disease some of the strength and hope that you possess. Give what you can and take what you need.
Don’t forget to live in the moment and not let the disease take more from you than you have to give it. I hope you have a good day today.
Pamela says
Dear Elana,
Thank you for sharing your experience and thoughts in such a pure way. You are a special soul… your strength inspires us. Ignore the people that hurt you… their lifes may have other challenges. Love from Peru.
Christine says
Elana- Thank you for your pure honest reflection. It is appreciated so much. The temptation is so great to want to wrap our lives in a fancy box with a big bow as we share it with others. Bravo to you for your honesty. Sometimes our life isn’t very pretty but it can be profoundly beautiful. There are many walking along side you for this journey. I heard this African proverb – If you want to go fast, go alone, but if you want to go far, go together. You will go very far. Thanks for sharing. Sending you love and prayers.
Larrythelymphoma says
I wish we could chat over coffee. I think there is a lot we could talk about. May 3rd 2014 will mark 2 years in treatment for me. I finish in August.
There are a lot uncertainties when you have cancer. You can’t expect yourself to be positive 100% of the time. The trick is to pick yourself back up again. Allow yourself to have a moment and then dust yourself off and keep moving forward. This experience will absolutely change you. I guarantee it. But those changes will be positive.
Here is an article I read around the time I was first diagnosed and I love it. I think you’ll like it too: https://m.huffpost.com/us/entry/1628266
Susan May says
I felt compelled to write to you after reading this. I hope I don’t sound redundant as I did not read the comments before I started typing. I cannot fathom someone so cold hearted that they would post anything negative. Delete those comments and don’t give them another thought. Hard, I’m sure, because they are so hurtful. Let karma do it’s job and let go of those select few. I think you blogging about your cancer is EXACTLY what you should do as we that are following your posts will know specifically what to pray for, send light and love to, send specific positive energy to you – however we “pray” for people. Even when you’re angry you should post and get rid of that anger. If I were your age and got this diagnosis, besides being devastated I’m sure there are days I would be plenty pissed off. Please don’t blame yourself, you did nothing to cause this. There was girl just a little younger you who wrote a great blog – the good, the bad and the ugly – who battled breast cancer that had spread to her lymph nodes. She is now cancer free. Her blog is called The Upper Trunk and it may give you hope or make you feel like you have a kindred spirit that understands. I look forward to reading about your journey and recovery and will be waiting to celebrate this when it is over and you, too, are cancer free. Love, Susan
Michele says
There is no “wrong way” to have cancer sweet pea, there is only your way and for me it is my way. I’ve been battling this monster for 4 years now and know you are doing it right and know there was nothing you could have done to stop it from happening to you. You were dealt your hand and those are the cards you get to play. You are playing your hand beautifully and although you don’t have to share it we are blessed that do! Hugs to you on this journey!
Michele
ihavebuttwhat.tumblr.com
Eric says
Keep on writing and keep on fighting.
You got this BEAT!
Jaye's Brain says
Having blogged about my own brain cancer and as a fellow adoptee (how I ran across your blog) I just want to add to all these lovely comments that you don’t have to decide to blog or not to blog, you can decide each day about sharing and what is right for you. You also do not have to stay with any doctors or treatment plans that do not feel right to you. You certainly will have something to add to the discussion with your East meets West philosophies, and I look forward to reading them when the time is right. The thing that has helped me the most has been to focus on one day at a time as much as possible. To surround myself with others of like mind. As much as is possible, find/schedule time to do other things besides cancer. Peace and love, Jaye
Shawn says
Maybe you could use your sudden fame to bring even more light into Mental Illness. How/What do I mean? People with Mental Illness, can spend hours or even days in pain, crying, asking: “Why Me…..Will this ever end…..How do I beat it?” The difference between your cancer diagnosis and someone like myself with Bipolar Illness (Male), is that for whatever reason people see and feel for the struggles of one with diagnosed with cancer, but can’t see or don’t realize how real the pain of depression can be.
I wish you the very best and I really hope you beat this cancer. From what I’ve read on your website and then some of your posts, I think you will overcome it and I also think that you will touch Millions of lives in the process. What will your message be, while you have this platform of sudden fame?
People WANT to read about your stuggles with cancer, so try to use this platform to help those you’ve decided for your works life.
The very best wishes for you!!!! I wish for a speedy recover, with as LITTLE as physical and emotional pain as possible.
Bernnie says
Hi Elana,
I just read your latest post and my heart hurts for you….I am a NHL survivor and here are a few tips I can share.
This is a time when you take care of yourself first. Bald is beautiful…get some great earrings and some fab lipstick. Rock it!
The negative people will surface but you DO have the power to release them from your life. Don’t let someone else’s inability to grasp your diagnosis ruin your day. I had some people disappear and others who came into my life who I now cherish because they have been through the trenches with me. Do not allow yourself to feel the need to comfort THEM. You are number one in this, don’t forget it.
Positive notes around the house got me through some dark times….I actually wrote in lipstick on my full length mirror the words from Christina Aguilera’s song, “Beautiful”….I am beautiful no matter what they say. Words can’t bring me down.
Keep a journal of what you are feeling every day…you can share with the rest of us, or keep it private….sometimes getting it out on paper made me feel better than having all the negative thoughts running around in my head.
After the intial shock and the “all hands on deck” with all the Dr appts, nurses fussing….it gets very quiet. Now you have to let your medication do its work and keep the positive energy flowing.
I went crazy worrying about eating organic, etc…but during this time be nice to yourself and just eat to enjoy. If the only thing that tastes good is ice cream, then eat ice cream…I did crave crazy stuff like sardines…but thats another story.
Please feel free to reach out and contact me if you need to talk …..I am a volunteer with LLS and can put you in contact with some support if you need it…
Prayers and hugs your way. Bernnie
Lisa says
You are amazing! I am so sorry that you anyone has said anything remotely negative. We love and support you. Hang in there. Positive thoughts only.
Joe says
Hi Elena.
Simply keep doing what feels right, including blogging your thoughts and sharing what you feel the need to share. Your journey is an inspiration to many. My best wishes to you and those close to you.
Susan says
You are incredibly brave to share your journey like this. Beware of trying to figure this thing out. You did not cause this nor can you control it. I think you are on the right track with focusing on Love. Love will not let you down. Love will gently guide you and fiercely protect you. All is well even when it doesn’t seem like it. You are not alone. May love and light enfold you like a blanket.
Elizabeth says
Your honesty and openness about ALL of your feelings are an inspiration. What a brave young woman you are. It is incomprehensible to me that people would feel a need to write such negative things to you. Whatever happened to the concept of “if you don’t have anything nice to say, don’t say anything”? You are not in control of the outcome of your disease, but you ARE in control of the environment you create internally and externally that may, or may not feed your illness. You seem to be creating a wise, courageous, hopeful, peaceful and honest internal experience. I wish you every possible good outcome and a peaceful learning experience during the process. Sending much love and warm wishes to add to the positive external environment.
Mike says
I was diagnosed with colon cancer 2.5 years ago. Here are three universal facts I think we all share:
1. It’s surreal and always will be.
2. It gets easier, slowly.
3. Be an advocate for yourself in every way.
We’ll keep you — and all the others fighting a good fight — in our thoughts and prayers.
Robin says
Hello Elana – Your post made me immediately think about Brene Brown and her work on vulnerability. One major thing I am trying to work on from lessons I’ve gathered from her is to not second guess myself. Every time you post it is an act of courage. And this quote from her comes to mind: “Courage is telling our story, not being immune to criticism.” And in the same vain: “Don’t try to win over the haters; you are not a jackass whisperer.” 🙂 Those who ready for you will flow with you and not resist. This process may even reveal to you how to later be “the jackass whisper” in your psyc practice.
Also, trust that everything you need is already out there.
You should share everything you feel compelled to share and when we don’t hear from you for a time we will trust that you are being efficient and just gathering your strength. All is well. With love, Robin
Bre Sarrow says
I saw your article 2 weeks ago from a few friends who shared it on Facebook. I began to follow your blog after reading many of your posts. You are a great writer with such a passion for life and what you do. In the short amount of time I’ve been keeping up with your story, I look forward to Tuesday so I can read what you have to say.
Your courage and strength are incredibly inspiring. On days when you feel so low, it will be good for your soul to read all of the positive thoughts, comments and prayers that people are sending you. It will help keep you focused on your end goal- beating cancer and beating it quickly! So please, keep writing.
Laurie says
Thank you for sharing your innermost thoughts with us, Elana. I know this is easier said than done, but try not to question the “whys” because it will drive you nutty. When I was diagnosed at 43 with Multiple Myeloma, I was already living a life of “It is what it is.” My daughter was two years old and I just wanted to do a whole lotta living very quickly as the 5-year survival rate in 2001 for MM was about 28%. But look at me… still here. I can tell you are a strong person… you have already explored alternative therapies (I chose none of the ones I looked into, so far, except I added a few supplements). Find doctors you can trust (if you haven’t already). As far as those haters, ignore them. They are unhappy with their own life so they just want to bring others down. We’re all with you in this and while every day will not be a good day, we’re wishing you the best. *HUGS*
Pam says
Your candor takes my breath away. Share in whatever way helps you heal, and I will send you warm thoughts for a healthy body and mind.
Annie says
Hi, Elana!
I read your post – amazed at the clarity of your words, the rawness and honesty of them. I read some of the comments…and completely agree. You have done nothing wrong. You are brave beyond measure…amazing and powerful in your vulnerability…don’t stop. In opening yourself up – you reach so many…the ripples of your efforts may never be known…but they will be there. And in return, I pray you feel the connection that spans the globe…that you are not alone, that you have prayers and well-wishes going up and towards you, that so many people are rooting for you…that we remember you during our days and say quick prayers for you even though we’ve never met. Above all – there is love for you…in vast amounts. When you’re down, or sad, or overwhelmed…remember that we are all there with you…supporting you, thinking of you from afar. Don’t stop… Please keep on keeping on…
Blessings from Alaska!
Jody says
Dear Elena,
I think your courage, to so openly and honestly express yourself is truly amazing. You already feel extremely vulnerable receiving such an unexpected diagnosis, and then to open your heart so beautifully was very brave.
I was thinking about what you said about “willing” yourself not to become Neutropenic with your Chemo. Possibly, another way to look at it, is that the chemo is doing its job; really being aggressive, killing your cancerous cells, in battle…and, becoming Neutropenic, is only proof that it is working so hard, as it is supposed to. Unfortunately, it kills your healthy cells temporarily, but it still indicates that it is fierce in battle with the Lymphoma.
I am sure you have heard of Kris Carr and her Documentary “Crazy, Sexy Cancer”, along with the many books she has written. She filmed this in the beginning of her diagnosis; very empowering in many ways.
I have been an Oncology RN for the past 21 years; I think Bald is Beautiful; at times, don’t know any different. I can’t wait to see your pic.
Continue to take care of yourself; one day, one moment.
Barry David Butler says
Hi Elana,
Don’t stop writing your Journey!!
Everything has mostly been said so I won’t go on and on.
I decided to Go All Natural and NO Oncologists with my Marginal Zone, Nodal, Non Hodgkin’s Lymphoma. I found that my original Surgeon who did the biopsy on the node in my neck was on board with Raw Foods, No Grains, Juicing and Anti Cancer Supplements.
BUT….It is VERY lonely this road I am taking because everybody including Family, Friends and other Docs are against it. Some even a little angry.
SO I wrote this song called “DON’T RAIN ON MY PARADE”
https://www.youtube.com/watch?v=3BkFvVEZyd
Check out The China Study and Chris Beat Cancer site….wonderful place and hopeful.
I would implore you to try the Natural Route along with what you are doing. Our Killer T Cells are the only entity on the Planet who Know how to stop runaway cells. We have to remember that it’s our OWN cells that are doing this not some hellish outside force. Maybe if we give the immune system some batter oil and water it will do a better job.
Thy Will Be Done….God is Great and Jesus Rocks!
Barry [email protected]
Chris Engel says
Elena
As a husband who supported a wife with cancer, I can tell you that all of the things you’ve expressed are experienced by every cancer patient and their loved ones. Unfortunately, you’ve been initiated into the most caring and unconditional communities there is: the cancer community. Bringing your fight public in a blog not only helps you mentally and emotionally, it enlists the larger community in the battle. I took the same path as a caregiver. It helped me express the emotions and kept everyone updated with our story. I received nothing but positive responses from family, friends, and strangers. Keep it public and the public will surprise you with its encouragement and support.
You’re already changed. Cancer fundamentally changes you, and those around you. Once a cancer diagnosis touches your loved ones, you begin to understand just how precious every moment is.
Craig says
Elana,
sorry to hear about your diagnosis and wishing you the best. I too have recently been diagnosed with cancer-Lymphoma (B-cell follicular which as you point out is more treatable) and have made my diagnosis public. I find that the amount of positive vibes I get far outweigh those negative ones that occasionally creep in. I also struggle with wondering if it was the right choice to go public as the weight of staying positive sometimes feels overwhelming.
I am dedicated to making something positive out of this by using the experiences to push me to become a better physician. I think that you are already experiencing this and you will excel in your practice once you are finished with this “bump in the road!”
Cheers
Craig
mayra lopez-humphreys says
Hello Elana
I immediately understood your the mixture of courage and fear you are experiencing. On January 16th of 2012, I woke up with a sore throat, I went to my family doctor, he diagnosed me with strep throat, gave me a prescription for anti-biotics and sent me on my way. For the next ten days I grew weaker and weaker. And after many terrifying Google searches (this I do not recommend-it always sound like a good idea, but trust don’t do it). Within a week’s time, I was diagnosed with stage four Burkitt’s Non Hodgkin’s’ Lymphoma, the cancer had spread through 60 % of my bone marrow. Burkitt’s lymphoma is actually the most aggressive form of any cancer, it can easily double in size overnight and it can cause immediate fatality. Without delay, I was admitted to nearest hospital, and within a week’s time I began a cocktail regimen of chemo-therapies that required eight cycles of treatment, each five days long in an in-patient setting-for eight months. I an cancer-free today and changed forever, by the fragility of life. Many Folks will give you lots of advice and obligate you to be strong all the time…be where you are..lean into the hopeful days and the despairing days. Find people who can compassionately walk the pendulum of emotion with you in love and without judgement.
May you find the light and love to keep you afloat,
mayra
Carol Warren says
You totally should have posted that entry. You said what so many of us have thought when we got the diagnosis. Every thing you are feeling is normal. Can’t tell you how many times I wondered what I did wrong hat caused this cell to run amok. You have already changed. You change as soon as they say the “c” word. Keep the posts coming, get those feelings out. Your words are helping me almost 3 years after diagnosis. And rock the bald head. I felt very free going bald. Praying that treatment goes well for you.
Kathleen says
I really appreciate how you share directly and honestly from your heart and soul. It’s an important kinship for those of us who have had cancer and an important learning experience for those who have not. You are strong yet vulnerable, hopeful yet realistic – a beautiful soul. Thank you for your courage and your willingness to make yourself so available to others. You inspire me to try to do the same. May your treatment go well for you.
Jill says
It’s so great to read your story, I can somewhat relate. 12-12-12, I got two phone calls. First was a job offer as a RN to work in the ICU at a level one trauma medical center. Sweet! Accepted. Second phone call was my pathology result from a needle biopsy of a thyroid nodule. Papillary carcinoma. Say whaaaat? I’m 29 years old??! So next month total thyroidectomy/central neck dissection and now synthroid for the rest of my life. Weird. I am blessed to have been diagnosed with a very treatable cancer with rare reoccurrence, and even more blessed to bypass radioactive iodine due to the tumor being <1.5 cm, but I also wonder. What did I do or expose myself to to cause this? Or was it genetics? I have no idea, but it's hard to not be scared of the future. Several of my family members have had sporadic cancers including my Mom with ovarian CA (still living cancer free 4 years now….double blessing). Thank you for all your insight and for being open to alternative therapies, I wish there were more MD's out there like you. Stay strong! You are in my thoughts
bita says
thank you Elana. your journey is not unlike siddhartha’s in meeting the four messengers that ultimately led him to find liberation. only, you are helping us all wake up to the preciousness of our lives by your courage to share your journey with us through this blog. thank you and deep bows to your courage, vulnerability and for being a full human being with fears, doubts, and the ability to transcend them moment by moment.
your words filled with me deep love.
Rowan says
I’m extremely glad that you had the bravery and vulnerability to share your diagnosis; most doctors seem to put up a front that they have never had to deal with disease in their personal life. Knowing that a doctor don’t have all the answers and shares the same struggles is oddly comforting to me, just as I suspect that therapy clients appreciate knowing that their therapists are not the perfect picture of mental health. I’m very sorry that you are in the position of being a bridge between the experiences of patients and medical providers. You have an amazing outlook on staying open to possibility and I have no doubt that sharing your experience will help patients others do the same.
P.S. – I don’t know what your financial situation is, but if you run across other t-cell patients who need help you can let them know that there are a few groups that have financial aid/copay programs specifically for t-cell lymphoma patients:
– National Organization for Rare Disorders
– Lymphoma Research Foundation
– Leukemia and Lymphoma
Marjie says
Elana,
I haven’t stopped reading your blog since I discovered it. Your writing is beautiful – true, honest, passionate, vulnerable, open. Please continue to write to share your story and to help others and yourself. I am 29 and a two-time cancer survivor. When I was diagnosed with breast cancer at 26, after getting engaged, I started a blog to sort out my feelings. To this day I continue to write, and people I’ve never met have sent me messages of support and love. The best I can tell you right now is FEEL and DO what is natural. If you feel like crying, cry. If you feel like writing, write. If your “Love Is” post “poured” out of you, then good. Let yourself feel every feeling. And don’t worry about others. Truly loving people want to help and heal, not hurt. Find those that lift you up. Remove those that don’t. And just FEEL. First and foremost take care of yourself. You will get through this. You have so much love and support. Thank you, thank you, thank you for sharing this journey with us. We are praying for you.
Stella says
Good luck with everything! stay strong, never give up! 🙂
Jodie says
Just came across your site last night via a Facebook friend. Thank you for continuing to share as you are dealing with cancer. It’s important for many reasons.
Love your Medical School Ukulele Song!
Janice says
I simply wish to offer my best most healing and peaceful thoughts. Everyone walks this sort of path in their own way. You do what you know to be right and what you are comfortable with.
Perhaps, those that said things unkind had loved ones that received poor quality attention and treatment – and so they lashed out in their pain. I’ll take over the compassion meditation for them so you can concentrate on you. You have grown quite a team here. Peace.
ardis says
Re: negative comments are a reflection of those who write them, you simply provided the opportunity to give voice. It is by no accident that you are who you are, where you are, in the profession you are in, surrounded by the people who are assisting you on this journey; as well as those who lack compassion and insight. You are brave and loving to share your story – a gift to more than you can know. Trust your heart, it is there that you will make choices most appropriate for you. There are many beautiful stories of healing of the worst cancers out there – none of which are simple for they cannot be reduced to a single action, just as a photo does not capture a life; healing is an integrated tapestry of mind, body and spirit; each must be addressed. Trust the process/your process and your intuition. Know that you are surrounded by all that you need. This is when life gets real. You are held in the hearts and blessed in the prayers of so many. namaste.
Christina says
Elana, You are beautiful inside and out. I just started reading your blog and was very touched by your Love is post and by this one. There are so many people pulling for you. I look forward to reading your posts for a long time to come. Sending you warm wishes and thoughts!
Stephanie Gallagher says
Dear Elana,
Thank you for sharing your story when it is still so fresh and raw for you. Having lost my fair share of friends to cancer, I, too, wonder many things, foremost being why does it seem to strike those who are in full stride toward realizing their potential and bestowing enormous gifts of love and gratitude to others. When I read your “Love” blog (my first), the feeling I came away with was one of incredible vulnerability. How could you — someone who is larger than life, in full career stride, in love with Peter and life in general, and with advanced medical knowledge — fall victim to a rare and aggressive form of cancer that seemed to appear overnight? It reinforces what I know all too well about this vicious disease, and that is that cancer knows no boundaries. I hope that you will continue to share your journey because it is part of your life story, unique to you alone. But within this beautiful tapestry, we can all learn more about love, hope and defying the odds, which you have already shown you can do. Keep fighting the good fight!
karen robinson says
Hi Elena,
What I think of you is “That you rock!!! Brilliantly rock!!!” k
Kat says
Dear Elana,
Although I live in a very small town in Kansas, vastly different than your life in L.A., I feel compelled to reach out to you during this troubling time. You know, we may live very different lives, in different cities, er, small towns 😉 yet, all of us, we all are still very connected. We are human. There is a fragility that comes with being human–and it REALLY shows up when something like this occurs. It is difficult to understand so many aspects of life, particularly the painful ones. Please know, you have every right to question what you are going through, to ask WHY, to feel sorry for yourself. You give all of us out here wonderful insight into everyday issues, so now is the time for us to give back a little to you by reminding you to stay strong and continue to fight. You will get through this and you will be stronger for it. Lots of positive thoughts and energy are being sent your way…..from the Merry ol’ Land of Oz! 😉 <3 Sincerely Yours, Kat
MBCaspary says
Dear Elana,
I wonder myself why things happen they way they do and every time the response I find, is that because they just do, there is no sense trying to spend time looking into the why. We are presented with a “new” way of living every day. You had learned to embrace your life before, that is more than what other people do. I just know you can discover good stuff with all this bad stuff.
In the couple of posts I read you transmit all that love. I wish I could be there to help you with whatever. Please know that I really wish you find your health again. Have faith!
A big hug!
Maria
Dee/reddirtramblings says
When I read the Love is post, I cried not because I have cancer, but because my best friend has battled it all summer. I love many people with cancer, and your feelings were beautiful and tender. It makes me sad that someone would say such things about your care. All I could think was good for you! I’m glad you had good doctors. My friend does too. I hope you feel ever better each day.~~Dee
Natalie says
Have you looked into Ayurveda studies?
My deepest sincerity and support. Stay positive. Namaste.
Susan says
Hello Love! I am a 5 year (breast cancer) survivor. All you are experiencing is so normal…As for the “haters” and for any though that you may have caused this, put them/it OUT OF YOUR HEAD! I am entrenched in the yoga world. One would think there would be lots of unconditional love (and there usually is). I knew intuitively for several years before diagnosis that something was very wrong…and for 3 years, I was sure I had cancer (I was on a Dr. Oz episode about intuition). I cannot tell you how many people have told me that my belief that I had cancer is what brought it to me…Or that it was my “karma”. What I have learned (and you most likely already know), these reactions are ABOUT THEM! It is their fear and their need to believe it will not happen to them that makes them respond like this. Stay strong!
Magdalena says
Beautiful, beautiful Elana. Bless you so for sharing! Of course we will all take it as we will… let us. Don’t mind us, we all bear some cross. I for one immediately wanted to answer your questions with YES, you will beat the shit out of it, NO, it was not you, YES, you should have been doing what you were doing, YES bold is beautiful.. But what do I know, and what does that mean to you right at this moment? Your questions are your quest, and you’ll walk it. You will, the best you can, being precious as you are, pain and all, horror and all, love and all, and so much of it! All I can do is send you gratitude from my meditation pillow for all this inspiration and awakening you’ve given me personally; and perhaps dream of joining you in Nicaragua, which I also happen to love, for some giggles one day. So let’s go through today, and then through tomorrow, with all of it, until one day we wake up giggling, wherever we may be.
Sending you tons of love and flying powder,
Magdalena
P.S. I have found this book on nutrition really helpful and evidence-informed, as you once said; in case you may too:
https://kriscarr.com/products/crazy-sexy-diet/
P.P.S. Brilliant essay on EBM by the way! Agreeing with you 100%.
Wendy says
Thank you for your incredible courage and honesty in sharing this huge struggle with the rest of the world. Think of yourself as a mighty warrior waging a battle against this evil disease. Even though a diagnosis of cancer is terrible it can also be a gift, one from which you are already receiving love, inspiration and encouragement from around the globe. You will never know how many cancer and chronic illness patients you are helping and inspiring to keep up the fight by simply publishing your thoughts and experiences. You asked if cancer has already changed you. The answer is a resounding YES! You will never look at life in the same way again.
From one survivor to another – Keep pushing through. Never give up, even if you want to.
Much love and Many Blessings
Another Warrior
Gary says
Keep up the fight!! You are one strong person and you will beat this horrific disease. You know better than anyone that you have to be positive, forward thinking. Give ’em hell and we’re with you.
Barbara Snow says
Sending you love to help in your recovery.
Barb in Minnesota
Larry Hochman says
“That “Love Is…” article poured out of me with almost as much necessity as an exhale. So, I wonder, did I really have a choice?”
Of course we all have choices, so in that sense you could have chosen not to write it. I’m also sure that would have gone against your entire being…because you ARE a healer, and the best healers have empathy for those they heal.
Who knows if there is some sort of Divine plan at work, or if there was a genetic predisposition, or if it just landed on you, Elana? But you understand the effect you’ve had on thousands, right? And you understand how freakin’ good the book and movie will be, right??? <3
Cam says
I follow you after the “Love is..” article and i’m glad to hear you are doing better. You sound like a strong, centered woman, and though I can’t really relate to your current health situation, all I can say to you is “change is the only certainty we have” so flow along with it, whatever takes you… Stay strong, lots of good vibes and strength from Chile!
Sincerely, Cam 🙂
Carrie says
I am shocked that anyone would have a negative response to your blog post. Don’t let anyone get you down. Thank you so much for your honesty. You are a courageous woman. Another person posted that you will beat this and educate people on cancer…. I totally agree. Keep writing. You have a gift. I look forward to accompanying you on this journey! Keep sharing and focusing on the number of people you are inspiring. Namaste.
Laurie says
Hi,
A friend sent me your blog. I am diagnosed with T-Cell Lymphoma also. I hope to find out Friday exactly what kind and the treatment. Some of the info was shocking to me. Two and a half years…WOW! I have been pretty brave so far and really hope I have it in me to fight this! I discovered a lump on my neck the day before my first grandchild was born. So I have him to fight for! Good luck to you! I’m praying for a miracle for both of us!
Rose says
Dear Elana,
Thank you so much for sharing. Please know that you are helping and inspiring so many people. I am so sorry for all your physical and emotional pain. I will send positive healing thoughts your way everyday and include you in my daily meditations. Much love and peace. I have a very strong feeling you will beat this and come out a stronger person. STAY POSITIVE and visualize yourself healthy. And thank you for helping others. In your darkest moments just breathe and feel our love.
Judy says
You ARE brave. You ARE loved. Accept it. Feel it. Ignore the idiots who have ugly/negative things to say. They are not walking in your shoes, or their parents never taught them any manners. =)
Merry says
A friend shared your “Love Is” post on Facebook recently .. I immediately time-traveled back 17 years ago to when, at age 32, I was diagnosed with Stage 2 cervical cancer after two stone-cold normal Pap smears w/in one year. Go figure. My protocol was a walk in the park compared to yours, tho’ having my ovaries cooked by radiation, then surgically removed before my husband of three years finished his PhD and we ever had a child .. well, that wasn’t part of my life’s plan. Cry, scream, shriek, sleep, maybe laugh hysterically .. whatever it takes to get thru each day. I wish you much health, happiness, fertility, and a long life. Me? The husband earned his degree a dozen years ago; we’re currently finalizing our adoption of a delightful 15-year-old girl .. life is good. Weird, but definitely good. ((Hugs))
Tara Marr says
Your story is beautiful and tragic, thank you for sharing it with us. It is enlightening and reminds us to be grateful for our health and everything that we have , vigilant with our health and those that we love and sympathetic to human kind…so many people have burdens they are bearing. I wish you health and happiness, and will keep you and your boyfriend and your family in my thoughts and prayers. Bless you
Kok ming says
Thanks for sharing ur thoughts. Keep systematically looking for sound possible cures. Best regards
Cindy Loukras says
I have a great interest in your philosophical approach to psychiatry, and have enjoyed following your blog. I was shocked to learn of your cancer and I wish with all my heart that you can make a long live recovery.
One thing I urge you to do is take the time to learn from Gabor Mate. He is often accused of blaming the victim, but as a holocaust surviver he understands the importance of healing yourself by recognizing how your early life affects your health. If you can, try to meet with him personally. Like you, Dr Mate believes that the mind determines our health, and we must always approach our health holistically. He will help you maximize your odds.
May of us love to hear how you are doing, but please focus on your needs, and do not try to please us. Be mad, be sad, and be sexy with your bald doo!
Gregg Krech says
Hi Elana,
There is a saying in Japanese, “Gambatte Kudasai”. It translates into something like, “Hang in there and do your best.” Pema Chodron often uses the term “groundlessness.” She refers to our desire to find something we can hold on to. But all the while what we really need to do is to learn to live with nothing to hold on to. It’s not easy but it is one of the wisest and most helpful concepts that I’ve been exposed to. May you find the strength, courage and wisdom that you need to work with your great challenge. You are surrounded by people with prayers, hope and support for your health and recovery.
Best wishes.
Gregg
ToDo Institute
April says
It’s because of your cancer that I ended up on your blog. It’s because of your writing that I subscribed and even linked some of your writing in my recent blogs. You seem like an awesome person and I love a lot of your thoughts on life in general.
Also? This: https://connectingdirectors.com/articles/39621-the-ring-theory-know-what-you-can-and-cant-say-to-someone-who-is-ill … More people need to be introduced to it. It’s okay to be angry about certain things, but it’s wrong to punch someone in the gut while they’re already down. Just wanted to put that out there; it’s not mine, it simply seems to make sense and help in bad situations.
Lucia says
None of your readers can fairly say you’ve changed but we can hope you that reading your brave posts has certainly changed us for the better. Sending warmest thoughts
[email protected] says
dont listen to those mean people. you stay strong! u will get through this.
Abby says
I was diagnosed with lymphoma in September, and am heading into my final chemotherapy treatment next week. I, too, am still wondering if this is real, and actually happening to me. Some days I wake up and only when I see my bald reflection in the bathroom mirror do I remember, “Oh yeah, that’s cause of cancer. You actually have that.” I understand, also, that my brain can’t yet fully comprehend the resonance that this illness will have on the rest of my life . It’s insane. I’m sorry that it’s happening to you. It’s a tough thing to go through. If it is any consolation, you strike me as a person who will use this experience to connect with and help others, as you already do in your profession and in your writing. I am, by no means, saying that cancer is a “gift” or any of that kind of thing, just that you may be able to do something good with this giant ass bad of lemons life handed you. I hope that gives you some comfort.
I, too, wonder if I diet coked myself into cancer. In some ways, that thought gives me a sense of comfort, like if I only don’t drink diet coke from now on, I can avoid recidivism. It’s nice to feel like you have some control, especially in the newness of cancer, when you basically go where the doctors tell you to go and take whatever they tell you to take to get rid of the insane cells that you had no idea had gone rogue on your watch. But, I will say that ultimately, the “what could I have done differently?:” thoughts are corrosive, because science doesn’t yet have the answers for why you got lymphoma. It is probably more self-punishing to put yourself through that thought process, though, admittedly, it is sometimes difficult to stop from going down that path.
You will learn to forgive your body, because you’ll have to be vigilant in caring for it like it’s this fragile thing and not the strong thing you knew it to be. For me, the forgiveness came relatively quickly. I’m not sure i’ll ever trust it again, though, which I suppose is an entirely different story.
I am actually quite grateful that you talked, in this post, about how you’ve cried and felt self-pity. I have, too, and this is coming from someone with a relatively easy-to-treat B-cell lymphoma. (I know in terms of cancers, I have a kitten compared to some of the lions out there. But still, I didn’t want a fucking cat, you know?) Cancer is bullshit. it’s terrifying and unpredictable and changes your life in massive ways. one of the biggest challenges, to me, is dealing with the fact that it’s hard to say that and have people really hear you. People tell me I’m strong and brave and positive, and I felt pressure to live that all the time because I knew it meant something to them. I have good days, and days when I can focus on the positives, but I can also say, despite all the good that people have sent my way during this time, these have easily been the worst days of my life. I mean, I have cancer. That’s hard. People will expect you to be positive all the time. They will “silver lining” it too (I’m sure some well-meaning person has already told you sympathetically that “At least it (your hair) will grow back” as though that thought helps you now, staring down the barrel of months of baldness. Mourn that version of you. You are allowed to be sad. You’re allowed to feel guilty for feeling sad because others have it worse You’re allowed to feel whatever, honestly. Just don’t buy into the idea that you need to be positive all the time. That shit ain’t possible, nor is it healthy, so try to let yourself off the hook.
I’m not sure what your doctors have told you, but with my treatment, becoming neutropenic is part of the process. The chemo knocks out your white blood cells. You’re at your nadir. Nothing you can do to prevent that. But, they should give you Neulasta or Neupogen to build those WBCs back up. I went from .3 to 9.9 (!!!) in five following my Neulasta shot. Ask your doctors about this if you haven’t already. Similarly, have you talked to them about replacing the PICC with a port?
You’ll make the best choice for you regarding if/how/when to rock the baldness. I am comfortable being bald at home. At work I wear my “healthy person costume” — a wig everyone thinks is just a really great haircut. Running errands I wear a hat usually. It’ll take your eyelashes a longer time to all out. I pencil in my thinning eyebrows and have used a product called Magnifibres to make my lashes look longer/more full. I have some self-adhesive false eyelashes I’m going to experiment with this weekend. I don’t like looking in the mirror and seeing myself as a sick person. However, I’m also trying to make peace with the fact that my job right now isn’t to be a beauty pageant contestant.
This is tough. It’s a LOT of change. It’s a life threatening disease. It’s huge. You’re doing a good job getting through it. Just keep taking it one day at a time and try not to let anyone tell you how you should be.
Barry David Butler says
Check out The China Study and this hopeful and informative site below.
WE MUST TAKE BACK SOME CONTROL.
We can make ourselves healthier if we go ALL IN.
https://www.chrisbeatcancer.com/
Barry [email protected]
Tanya says
I think you’re amazing. So brave and inspirational even though you may not always feel that, we do. You’re so gracious to be sharing your journey and thoughts.
Tanya says
I think you’re amazing. So brave and inspirational even though you may not always feel that, we do. You’re so gracious to be sharing your journey and thoughts. I look forward to Tuesdays now because of you. I pray for healing and positive things your way. And I have a feeling your beauty is going to shine through that smooth bald head of yours. Bald is beautiful especially on a woman!
Tan Soo Eng says
The list of well wishers is getting longer and longer, but I think it is still important to let you know that your sharing matters. Your generosity matters. Your pain and tears are heard and felt. Thank you.
Lori says
I believe wholeheartedly that we are all meant to share our stories. Some voices reach further than others, some reach a handful of people in their inner circles, but all stories are important. I learned early on that our words can and typically do have a lasting and profound impact upon others. You’ve noticed sometimes that impact is negative, but that is only because of where that individual is at on their own path that they perceived things negatively. I also believe wholeheartedly that love heals. If you have received an outpouring of love that you could not possibly return, inhale it into every cell of your body and literally live off of that love. When you’re ready, pass forward all of the leftover love to the next – because there will be a next who will need every ounce, just as you do in this moment. Vulnerability allows us to be open enough to receive whatever we need, even if it is perceived as a punch to the gut. There’s only one way for the ego to die and the spirit to emerge – a punch to the gut and an outpouring of love. Sounds to me like you’re in a really, really good place! MUCH love to you, dearest “stranger”, your words touch my heart and I hope you continue to share your journey out loud 😉
Justine says
Thank you for saying it, this. All of this. It would have been harder for us all walking this cancer path to only hear the good side from you, to not hear the real fears and questions–because we all have them. Know that it helps all of us to hear the fears of one (remember, as you wrote, we all share the joy and the fears–we are all going through this together).
I am a nutrition educator, trained as a midwife, I have had five babies I nursed for 17 years. I sat and looked at the nurse who gave me my diagnosis of stage 4 triple negative Inflammatory Breast Cancer with confusion and disbelief. This coulnd’t be real. Then each person who knows me reacted the same way–how could I, clean eating, low risk factors and all have this beast?
Why? Shit happens. Who knows, but it’s not our fault. It’s not the diet soda or any other handy fall-guy. And, while a real food diet will support your healing, the idea that any one food, herb, supplement will be the key is a bit of magical thinking. (That said, I am using medical cannabis in several forms and would be happy to share insights with you. It’s a valuable tool, with fewer side effects than the allopathic meds for the same side effects.)
Keep sharing with us, because you are holding up a mirror–and we all need what you are showing us.
With love from the Olympic Peninsula in Washington state
Justine says
Thank you for saying it, this. All of this. It would have been harder for us all walking this cancer path to only hear the good side from you, to not hear the real fears and questions–because we all have them. Know that it helps all of us to hear the fears of one (remember, as you wrote, we all share the joy and the fears–we are all going through this together).
I am a nutrition educator, trained as a midwife, I have had five babies I nursed for 17 years. I sat and looked at the nurse who gave me my diagnosis of stage 4 triple negative Inflammatory Breast Cancer with confusion and disbelief. This coulnd’t be real. Then each person who knows me reacted the same way–how could I, clean eating, low risk factors and all have this beast?
Why? Shit happens. Who knows, but it’s not our fault. It’s not the diet soda or any other handy fall-guy. And, while a real food diet will support your healing, the idea that any one food, herb, supplement will be the key is a bit of magical thinking. (That said, I am using medical cannabis in several forms and would be happy to share insights with you. It’s a valuable tool, with fewer side effects than the allopathic meds for the same issues.)
Keep sharing with us, because you are holding up a mirror–and we all need what you are showing us.
With love from the Olympic Peninsula in Washington state
Katie says
You are amazing, powerful and divinely supported! Your purpose is so important and on purpose! The love and appreciation for you far outweighs the bad! I cry everytime I read your sincere heart speaking posts….you are in my prayers! Keep believing beautiful spirit! The world needs you….
Amanda Ryden MD MBA says
Wow have you ever received support!!! All these wonderful comments. Other good reads, one by a friend of mine, Richard Rowland, Unspoken Messages, published November 2013. About his own journey after diagnosis and his message to all of us and for amusement, Breakfast with Buddha – almost like a bible for me. Lots of Love!!
Luca says
Thank you for sharing your story with us.
You are incredibly brave!
Sending positive vibes your way!
Love, Luca
KC says
Elana,
Thank you so much for sharing your story. Your story brought me to tears. You are truly an inspiration. I can see that you have touched many, many lives, and will continue to do so! The world needs more people like you- compassionate, intelligent, genuine, brave, talented, and beautiful. I have faith that you will beat this.
Love,
C
Roos Korste says
Hi Elena. Thanks for sharing your story. Wish you all the best and strength with your recovery, Roos
Carin says
I don’t know what to say except thank you and bless you. This terrifies me beyond words, and you seem amazingly strong, graceful, and human. Let yourself cry. This sucks beyond what I can imagine. Then get back to fighting your good fight. Your words will inspire others facing similar situations to fight as well, and let themselves be human and cry, too. May whatever good forces are out there embrace you and help you kick this cancer crap to the curb.
Barry David Butler says
This is one of the Best Sites on the Internet and run by an MD !!
Barry [email protected]
https://nutritionfacts.org/2014/01/14/using-lavender-to-treat-anxiety/?utm_source=rss&utm_medium=rss&utm_campaign=using-lavender-to-treat-anxiety&utm_source=NutritionFacts.org&utm_campaign=d1f0639efa-RSS_BLOG_DAILY&utm_medium=email&utm_term=0_40f9e497d1-d1f0639efa-23400777
Maria says
Elena,
You inspire me in so many ways. You have such a way with words. I am in remission from lymphoma, so I understand all the questions you wish you had the answers to. Do what you feel is right for you. You’re an amazing woman for sharing your story. Stay strong!!! XO
fanny says
DearN Elena,
I am deeply moved when I read what you are going through. I first read your “love” post, and then I had a look at your blog. As it is, I am a nurse (recently graduated from McGill, Canada), and I am now trying to get a job in France. I am wondering about how to practice a holistic care within (or outside) the hospital setting. As a result, reading that you support this type of medicine felt really appealing to me. I believe what you are going through is meaningful for many, many people. I believe it is hugely important that you get all the help you need and that you keep writing about your experience. I believe also that you are now developing a resilience that is worth a 1000 articles on the subject. Just for this reason, I wish you will always find the strength you need from all the support you get from the blog and elsewhere. I believe there is a time in life when you give, and a time to receive as well. Maybe it is time for you to accept this love because you need it to overcome the disease.
I wish you sincerely to grow in that experience and to find your happiness, in the way to choose to have it.
Ettie Shurack says
You are such an inspiration! Thank you for your poignant beautiful articles! They are all full of so much depth and meaning! Wishing you an abundance of blessings in your life and may you celebrate with your family and friends in good health and always with such positivity and strength!
Miss M says
Thank you for sharing your story. This is the first blog I have ever subscribed to, and I did it because you touched my heart and soul. You are in my thoughts, prayers and inbox.
Namaste.
JPG says
Sitting here getting my 3rd treatment of ABVD chemo. Some people think I should be normal through all this as if it is no big deal. Well it is a big deal to ME. Others as with you are a ray of sunshine for me. You will get through this and will be all the better for it, Just forget about the negative people and look at the positive people for they will be the ones who help you through this…. Continue on the road to recovery and I will say a prayer for you and your loved ones.
keith young says
Hi Elana,
Thanks for sharing your journey. I have not gone through all the posts so please forgive me if this is a repeat, but here are a few ideas that you might find useful. I am currently going through chemo for light chain amyloidosis so have a little experience on the subject.
1. keep a complete record, if at all possible, of all the lab reports and tests that have been performed on you. a nice 3-ring binder helps. then research any lab items that are “high”, “low”, out of range.
2. be aware that, although your doctor is doing the best that he can, he can only allocate a limited amount of time for each patient.
3. listen to your body and share drug reactions with your doctor.
These activities will arm you with knowledge for any decisions you will be asked to make in the future, i.e. treatment options.
Best of Luck and Stay Strong!
Keith
Joanne says
Dear Elana,
Please know that your writing is inspiring me to continue to fight. I know there are days I don’t think I can go on with breast cancer treatments and I open up my email and find your articles. Everyone tells me, “No one dies of breast cancer anymore.” (Tell that to the 40,000 people that died of it last year.) You continue to touch the very deep, sometimes dark, feelings I have every day, but I am unable to express. NO ONE, and I mean, no one can know what we feel unless they have experienced it. Without your courage, I don’t think I would have the courage. You lay out the simple truth about fighting cancer, minus the platitudes (If one more person tells me to be positive, I may go postal!) I sent one of your articles to all my friends and told them that this is what I feel every day. Only one friend responded with, “This left me breathless.”
Blessings.
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