Last week I was walking from my oncologist’s office to my car when I heard a voice calling out.
“Hey! Hey you! Hey there!”
I didn’t think he was talking to me but I was the only one there so I turned around. It was the guy manning the valet station. Once he caught my attention he waved.
“Hey there! How you doing?”
I waved back. “I’m good, thanks!”
He smiled. “Good, cause you’re looking good, too!”
(This was definitely the highlight of my day and the first time I’ve been catcalled since my stem cell transplant).
It happened again yesterday—I was walking back from the post office when a sexy salt-and-pepper put down his cell phone, smiled, and said hi to me for absolutely no reason.
It’s interesting for me because for the last few months I’ve been invisible. Don’t get me wrong—sometimes it’s nice to be invisible, to see people glance right through you as if you’re not there. Especially when you’re feeling bad, and especially when you feel you don’t exist in the material world at all, but in some strange in-between of presence and death.
When I first relapsed I’ll be honest and tell you I hoped I would die as quickly as possible. From everything I knew relapsed T-Cell ALL had a miserable prognosis. When I was first hospitalized and the on-call attending told me the plan was more chemo and a stem cell transplant, I put my head in my hands and cried and said, “I don’t think I can do it again.”
The reason I wanted to die quickly is that I’ve learned there is something worse than death, and it is fear. As I waited those first few weeks to see if the chemo was working and the tumor was shrinking (a necessary first step to having a successful transplant), I’d “test” my lungs on an hourly basis, breathing as deeply as I could to see if there was more space in my chest, shifting positions obsessively to see if the pressure on my lungs felt lighter.
I ruminated over the possibilities. If it didn’t work, how would I die? I googled “how do you die from lymphoma” but mostly got answers on how one dies from leukemia (usually a combination of bleeding and infection caused by cancer cells in the bone marrow pushing out healthy cells needed for blood clotting and fighting infection).
But I didn’t have any cancer in my bone marrow—just in my chest—so I thought it through to the most logical conclusion. The tumor would continue to grow rapidly over the following month or two until there was no space left in my chest and I went into heart failure or suffocated to death.
I frantically googled “psilocybin therapist Los Angeles” because I heard it could help cancer patients process death (unfortunately this is not the type of thing doctors advertise online). I was seized with fear, terrified every moment I gave my mind the space to think. What if what happened after death was even worse than this, worse than life?
While I waited I wrote my will and made an Advanced Directive. There was a question where you could specify what you’d want to happen to your body after you died. I never thought I’d care about such a thing—why would I? I’d be dead anyway. But when I really imagined it, I did care. I wanted to be buried in a Jewish cemetery, somewhere nearby so the people who cared about me could visit. I didn’t want to be forgotten.
But… none of that happened because the tumor shrank with chemo, and I went into remission. Then I fretted about finding a match on the bone marrow registry, but there she was—my little German angel. Then I worried she’d change her mind, or that the stem cells would get lost in transit (she donated her cells in Germany before they were couriered to Los Angeles).
I worried when I was admitted to the hospital while I got total body irradiation and high dose chemotherapy to eradicate my immune system and prepare me for transplant. I worried right up until I saw with my own eyes the bag of cells hanging off the IV pole as they were infused into my body. Now, I only had to wait and see if the cells took, or if a I developed a life-threatening infection, or if I got graft versus host disease, when the donor’s cells attack your own body, which can have serious consequences.
But… none of that happened, either. Sure, I felt like shit in the hospital, but I didn’t have any major complications and after a month I got to go home. I worried about infection but I didn’t get one. I wasn’t supposed to eat takeout but one day I was craving pizza so my mom and I ordered delivery and I ate the pizza and nothing bad happened (we did have to hide the pizza box evidence from my husband because he had an eagle eye on me to make sure I followed all the rules, which I found adorable. I’ve never seen someone use so much Purell in their life).
I walked around the block and nothing bad happened, so I did it again. I kept my eyes peeled for signs of graft versus host disease but didn’t get it. Then I had a follow-up PET CT and it showed no evidence of cancer in my body. Yes, I was (and still am) floored with fatigue, and my body aches, and I sleep 12 hours a night, but there has been no catastrophe, no transplant rejection, no relapse.
Last month I passed the 100-day mark from my transplant, a clinically-relevant and symbolic signpost that the worst is (hopefully) behind me. Of course, though, I’m still at risk for relapse and there’s still a sense of existential dread. I was chatting with a friend recently about what age we feel. I (half) joked that I feel 65, and he said he feels 30 (we’re both in our late 30s). I asked him what being 30 feels like.
“Oh, you know.” He said. “It’s that feeling when you’re settled and have your career, but you still have energy and your health and you feel like there’s a lot of time life.”
Of course it made sense but I felt a little sad when I heard it, because it made me realize I don’t feel that way at all—I haven’t felt like I have time left since I was 30, before all this started.
I’ve discovered one antidote for the existential dread, though—shopping. Mostly for face creams, because that total body irradiation did not help my skin tone. I’m getting Invisilign and I prepaid my malpractice insurance for the year. I’m writing my book. My brother and his wife just had a beautiful baby girl and they asked me to be the godmother and I was elated to say yes. I’ve already decided I’m going to teach her piano and swimming and good grammar (don’t get me started on messing up object and subject after a preposition).
I live each day as if I have all the time in the world, and that makes me happy. There is a joy in being ordinary, in having the same petty worries and pleasures of a regular person who hasn’t repeatedly had to contemplate their own death.
Maybe someday I’ll feel so ordinary that I’ll vent on Facebook about how the kitchen windows arrived three days late or how the DMV is sooo disorganized and I can’t get an appointment to get my Real ID or how the kids these days won’t get off their phones. I’m not quite there yet, though.
But hey—at least I look good!
Thank you for writing this. I am very happy you are doing well. 🙂
I have been following your story since 2014. I am thrilled you are improving and looking good! Your strength and courage inspire me, as we all have a battle we fight! Keep writing and healing because I am cheering for you! ❤️
I wish you ongoing good health. I wish you love and happiness
So good to hear you are doing well!
I think of you often and am always delighted to see your name in my inbox.
Brightest of blessings to you Elana.
Wow, you popped out from the past!
Since I last saw a post from you, I lost a sister to leukemia, so it brought some joy to see that you are doing well.
Thank you so much for sharing. I have wondered so many times how you would be doing. So happy for the good news.
I agree that fear is probably one of the most difficult things to process.
Stay strong!
‘Congratulations’ sounds woefully inadequate, but congratulations! And, yes…you look amazing!
you look BEAUTIFUL. and you are amazing. I think of you often and loved reading this.
Yes, thank you for sharing. I love the humanity in your writing and how easy I can see what you are talking about in your storytelling. The Universe has more in store for you clearly and we are very glad to have you here!
I was so happy when I got this email. You look great !
So glad you are in remission. I was checking you web site about a month ago looking for updates on your health. Believe it or not even though i dont know you, i think about you often. Hoping the best for you.
Yes you do look good, Elana! Living each day as though you had all the time in the world. You could teach people to do that! Wonderful!
You look beautiful and your spirit is terrific!
100! Wahoo! Insert heart emoji because I’m too old to know how that works on my desktop. Add a fist pump, too! I always love your updates. You’re beautiful inside and out!
As a person with lymphoma, I refer to your energy point system post all the time. It has really helped.
Wishing you many, many ordinary, beautiful, boring days.
I have been following your story and I am so happy you are doing well! Congrats on hitting the 100 day mark!
Tears in my eyes. I have been following you for several years now. I don’t comment often but just know that even though I don’t know you, I love you. I love your stamina, your determination, your will. I love that you are human and not perfect and not claiming to be. You are such an inspiration. I do not have cancer and I cannot even remember how I came to find you way back when, at the very beginning of your journey. All I know is that I will always care, will always be your friend, even if it’s just in cyberspace. I am a married woman who has lived long enough to see 60. I do not have cancer. I have a husband and children and grandchildren. Every time I read one of your posts, I close my eyes and send healing to you, I see it, I envision it, so that you can also have these simple wonderful pleasures in life without worrying about death anymore. I love you.
Carol – this is – quite simply- one of the loveliest messages I have seen on the interwebs. And I love you for it. ❤️
So beautiful!
I love such kindness, authenticity, and deep compassion.
Alana:
Great news, thank you for sharing.
I discovered your newsletter several years ago when my Sister-in-law was battling cancer and I found the endearing unique insight into your own brave battle provided profound real glimpses into the strangeness of Cancer. I’m 60 now and cancer is all around me. Sadly, my Sister-in-law lost her battle and I drew closer to my older Brother in the process. He happily remarried last year and three months later his new wife was diagnosed with stage 3 cancer. As a large extended family, we unitedly fight the illness together through love, support, care and service.
I can truly say how much I honor and respect Cancer hero and survivors like your self. Keep up the good writing, it does much good to many others that you would never know.
So glad to hear you are doing so well. Thanks for the update. Love and hugs.
Wonderful dear Elana, you beauty! Sending love 💕 from Massachusetts! You rock that look!
whoa. you are incredible. thank you.
I am so glad to read that all is going well right now. I wish you many, many more happy years.
Congratulations! It is lovely to hear how well you are doing. Glad to know you are eating pizza and walking about. I admire your ability to put one foot in front of the other and carry on. Much love,
So lovely you are better, much much better! It gives me hope after having RA 21 years, that the body can heal. ❤️I am better, too.
Ellen
Elana, your storytelling continues to shine in spite of the hardships you’ve faced throughout the years. I’ve been a “fan” since the ukelele song and the message you wrote in reply to my comment about you being an inspiration for me, a struggling first year med student. I hope the fear you face subsides as you immerse yourself in the daily struggles, triumphs, and mundanities of daily living. The glasses are cute, too!
So happy to hear from you and see how beautiful you are.
Sending love,
Barb
This piece filled me with light. I feel so thankful to receive this news. Be well. Continue to shine.
Yes, you look TERRIFIC! Thanks for the update.
Elana- You look beautiful. You are a wise warrior. Your update made my heart fill up with joy. Sending you warmth, peace, and love.
-Katie Regan (Your previous Stanford Hematology NP) 😉
I’m so glad to hear that you are doing well. You look great! May you live to be 120💓
You suffer from multidimensional wonder and awwww. I have been following your journey for a long time now and have fallen in love with the extraordinary human being you are and always look forward to your posts. Thanks for being you!
You look stunning and are truly remarkable in every way! All the very very best to you! xo
Elana, you look beautiful. You inspire me. You’re one strong, bad-ass woman! 😀 I’ve had to face possible imminent death on the average once a year for the last eight years–not mine but that of someone I love dearly. (Mental health issues).
Just knowing you exist in the world and that you do more than exist–you live every day to the fullest helps me and everyone else in the world.
Thank you for your courage in sharing your story with us. I wish you the very best.
Too be frank, you look much, much better than I thought you would when I clicked on this page! Congratulations!
You go girl! Sending you even more healing, peace and love.
And yes…you DO look amazing. No wonder people are beholding you and smiling.
I don’t quite recall how I started following your story but I have been since 2014 according to the bottom of the email. Your words having a way of pulling me in. In any event you look wonderful and reading this post has brightened my day. Thank you for your honesty and candor as always. Wishing you all the best and hoping that you feel 30 real soon.
Sweet Elana – wishing you continued catcalls, more pizza, tons of time with your god daughter, and as much time on this planet as you want. I’m so happy to read this amazing report about amazing you! God bless you.
Love,
Moira
This is amazing news!
And you do look gorgeous!
I just seen in my email I’ve been receiving and reading your emails since 2013 and it feels great knowing how you are doing and how you’re fighting all this. I wish you all the best and that you feel like a wonderful 25 years old soon!!
I am so happy to read this news. I still remember feeling a gut punch when you published your news last summer. Like everyone who has commented I feel invested in your journey and wish you good health and happiness always. I must say it’s so nice to read all the positive comments in this divisive times.
So happy to hear this – you do look great. Many blessings.
Thanks so much for this timely post. In ten days, I will have to decide whether I want heart surgery and keep living but high odds I will have a massive stroke. Had first stroke two prior to planned surgery. I was worried enough then. I wish I had your strength. I have been following you since the beginning. Just wondered how you were doing recently. So happy to hear you are in a good place right now. Yes, I agree you are an inspiration and I am grateful that I came across you somehow. Look forward to your book. Best to you. Vicki
That is a stunning photo of a beautiful person inside and out. You are a true inspiration! Thank you for your vulnerability as you’ve shared your personal story these past few years. I am forever grateful for how your words have helped me and I’m thrilled that you are doing so well right now! May your health continue to flourish!
Continued good health to you . I’ve been following since 2013 and always glad to hear your updates .wishing you the best
Bev
You inspire all of us mere mortals! You are beautiful and wise, and somehow, against all odds, you found your guy in the midst of the chaos. May you be blessed with ordinary day after ordinary day, because, as you have probably figured out by now, all of them are extraordinary. May you discover the treasure of even one small moment of peace in the midst of fear, one small glimmer of shimmering light in the darkness. Hold fast to joy. Hold fast!
You look beautiful, and I can see the wisdom in your eyes. Great to hear from you… been wondering. I am happy that you are still here on Earth blessing those around you and us. I have grieved the not-in-my-control death of my former self, so I can somewhat relate. Peace be with you.
Beautiful one I am pleased for you, wish for you a very long life lived in love.
Pizza!!
So strange that I just went “looking” for you online two days ago. We’ve never met, yet you’ve touched my life and I was wondering how you were. What a lovely surprise your email was! Continued healing to you and thank you for sharing your journey.
Congratulations on each day. As a fellow cancer survivor, I appreciate what you have gone through. And you are right, it is the fear of the unknown that gets you. I was once told FEAR stands for False Evidence Appearing Real……I try and hold onto that. I have thought of you since your last post. I’m sure you are in many peoples thoughts.
I don’t know how I found your news letter and inspiring story , it was before I even moved to LA. A new post always seems to pop in my mail when I need it most . Thank you for sharing and helping so many others along the way .
( please keep us all informed if you are speaking at any public events )
WooHoo
You do look so beautiful.
I am so happy for you.
During the time of my stem cell recovery you were great company to me through your blog. I thank you for that.
I will be in line to purchase your book.
My prayers for you to read those beautiful words “within normal limits”
on all your blood work results.
Stay well.
So great to see you and to hear from you. I was compelled by you well before my own cancer diagnosis two years ago. I am cancer free today, and I celebrate your wonderful update, too! Yes, you are a beauty, no doubt, and the words you weave are utterly gorgeous, and after my own cancer battle, they speak to me in a whole different and deeper way. So happy you’re writing a book! I look forward to reading more of what you have to say.
So breathtaking to hear from you as I was JUST thinking about you and wondering how you are doing. Keep spreading your beauty, wisdom and intellect. I am a captivated reader.
Sending love from South Carolina,
Amy
I am so happy you are feeling better. You look gorgeous. This fills me with hope.
Elana, you look amazing. I was really scared for you when I heard you had relapsed after everything you had been through to finally get to a point of hopeful optimism and NED. I pray it will stay away this time for good. I was fighting an aggressive breast cancer around the time you were first diagnosed. So far, so good. I’m glad you found the strength to fight again, and the fact that you are doing well is a lesson to us all. Thank you! Be well. I look forward to reading your book.
I am so happy that you are in remission. You look like your old self — beautiful and full of serentity.
I don’t remember how I learned of you since you were an intern & diagnosed back then. But, I haven’t stopped reading your messages/journey like you’re someone I know. You will always be in my loving thoughts & prayers because you came into my life & matter to me! XOXO
I have so look forward to hearing from you again. As a healthcare provider I can truly appreciate your writings and as a breast cancer survivor I can relate in a small way to your fear and trepidation. Always waiting for the other shoe to drop. Please keep up your posts, we are here waiting for your truthful, real words and thoughts. Here’s to another hundred days times 100!
Great to see you so glamorous! A message long awaited! Thank you so much for this post! Hug and kisees from San Jose, Costa Rica
You look FABULOUS!!!!!!!!!!!!!!!! I am elated that you are doing so well!!! Congrats!!!
Omg I am always SO excited when I see an update from you!! You look GORGEOUS and the skin creams you are shopping for are definitely working because your skin is glowing. I am so so so happy for you that you made your 100 day mark and that you are living the life you want. Please keep us posted- I am sending positivity? Love? Good vibes? Light? Peace? A potpourri of all? From NJ. ❤️
As always, I start to think about not having heard from you in awhile and then your letter arrives! I have followed you from the beginning of the journey you did not ask for. I read everything you wrote and I was so sad. I also felt a since of pride, like a Mother would feel for a child.
I was so happy when you went into remission and when you got married.
I am sure you have heard this so many times…..you make the world a better place in so many ways.
We live in a world that is not fair in a trillion ways and what has happened to you in the past and now is one of those unfair trillions.
One day at a time…..sometimes I tell someone one second at a time in order for them to be able to move on.
10o days, my heart fells with joy.
To 120 times around the sun.
We are blessed to have you.
So look forward to hearing about all the wonderful things you will share and teach your niece.
I so pray I get to meet you someday.
You are an amazing soul and the entire world will be your guarding angels.
There is truly no way to say thank you………
Fondly, Marsha
I am so glad you’re back and still here – I was so worried, I’ve been checking the site for months. So so glad you’re still around and it went as well as it possibly could, that is simply the best news. Made my day to see you smiling again. Here’s to hopefully a wonderful prognosis and happy future.
As a PET technologist I have cared for hundreds of patients that have been through similar experiences. You are an inspiration to me. You are and have always been a beautiful person. You also inspire me to get through my days as I live in severe pain all day. Thanks for helping so many people. Have a wonderful day.
What a wonderful post! Your emails have been a part of my life since before your initial diagnosis and treatment, through my own diagnosis and treatment, until now. Thank you for being so open and honest and for the beautiful articulation of your life experience. Namaste.
I was thinking about youths other day! Wishing you many moments of just ordinary problems! Many blessings to you !
Blessings to you! Thank you for sharing – sending you love and light!
Hi Elana – so happy to hear of your improvement. You are such and inspiration sharing your story, strength & vulnerability. I look forward to buying you book. Sending lots of love & healing vibes your way. Big hug.
Elana when i feel the courage and determination in your words that you so obviously transmit to fully live in the face of cancer, it’s easier for me to find these qualities in myself — this is a real gift that i truly thank you for. and thank you for writing so beautifully about your journey and letting us be a part of it with you in this way. i really look forward to holding your book in my hands, and remembering you in the midst of my own trials with this trial of the human spirit we call cancer.
You are amazing and you are beautiful! I am so happy that you are doing well and have reached the 100 day mark! Prayers for continued recovery and good health.
So happy to get this! You look so very beautiful. I am really happy to see those guitars behind you. I hope you play them or get to hear them being played often. God bless you for your heart and for sharing your delicate and awesome strength with us.
Love you, Elana.
Hi Elana – I went back through my emails to read this one as I am going through chemo for a recurrence of breast cancer. You are a phenomenal writer – the experience of having to contemplate your own death twice and the series of what ifs during every step of the process is what I needed to read. That is my life right now. It is hard. I have two young kids and the thing I contemplate the most is what will happen to them if they grow up without a mother, and then intense sadness about not seeing them grow up. I also think about how I might die from this – will I waste away, will I have to be in the hospital or hospice, will I have to say goodbye to my kids and how does one even do that. It is terrifying and overwhelming and sad. My prognosis is good so the worry is probably unproductive, but doing chemo twice, and this treatment journey, it brings up a lot of fear. I wanted to say thank you. And also I believe at one point you had launched or published a series on cancer but I was unble to find that. I may have made it up. If it is a real thing, is it possible for you to direct me to those resources? Thanks s much.