I’m on the long road home.
The long road home is knowing the worst is behind me, but that the most is in front of me. I am thrilled to be in remission as of two weeks ago, but still have nine months of intensive outpatient chemo left, and then two years of less intensive maintenance chemo.
On the long road home it’s hard to remember there was a time having cancer didn’t consume my life, even though I was diagnosed only a few months ago. Likewise, it’s hard to imagine a future absent of constant doctor’s appointments, side effects, exhaustion, baldness, flabby butt syndrome, transfusions, etc.
In a strange way I have never lived more in the present moment than I am right now. In this same way, it is difficult to find solace in my knowledge that this will all someday be over, because both the future and past are concepts that seem abstract, theoretical.
On the long road home I realize that even if and when they say I’m cured (after a certain number of negative PET scans), and I get to move on with my life, I will never be the same. Something happened that has put me on a different path than I imagined for myself. From the smaller things (how long will it take to grow back my long hair?) to the bigger things (will I be able to have children after all this chemo?) I remember there is much I have lost. There is more I might still lose.
On the long road home I forget who I was before this all happened, who I might be when it’s all over. The other day I was walking around UCLA campus and saw a former attending of mine. I went to wave hello but noticed she was looking right through me, as if she didn’t recognize me. I don’t look like myself, and I don’t feel like myself. Who am I?
The long road home is a marathon, not a sprint. It is not glamorous or exciting. I get tired sometimes and want to quit. I imagine how much is in front of me and wonder if I can do it.
Last night I woke up at 3am and couldn’t fall back asleep (this happens often—something about the medications messes with my circadian rhythm). I looked over at my boyfriend, Peter, wrapped my arms around him, and kissed him on the cheek. In an adorable, half-asleep sort of way, he tried to kiss me back but missed and hit the air. Besides being completely endearing, this moment made me remember, Life is precious.
I realize this in those “in between” moments, when that Bruce Springsteen song I love comes on in the car, when the sky lights up at dusk, when I get a Get Well card in the mail and remember that people care about me, when I’m walking to my doctor’s appointment and catch the faint scent of the ocean, which I miss so much.
Life is precious, even when it’s imperfect, painful, and sad. Especially when it’s imperfect, painful, and sad.
I can’t have the life back that I imagined for myself before I was diagnosed, but perhaps I’ll have a new life that will be even brighter.
I’m on the road. I have to keep walking. There is no other choice, because I want to live. I want to go home.
***
Photo by Ivan McClellen
The long road home twists and turns in part according to our beliefs. May you always believe that the best is yet to come, even if you cannot see its color yet. Sending you strength and love for the journey.♥
Elana, it sounds as though you are right there in the messiness of Mystery.
Reading your words this morning at my desk in the little office off our kitchen, I’m reminded of the contrast between seeing a gorgeous painting in a museum, where the walls are clean and smooth, the ceilings high, and the labels on the wall tell us who painted this work and what name they gave it —
I’m reminded of the contrast between this museum view, beautiful as it is, and the messy reality of the moment when the artist puts brush to canvas, over and over, in a studio filled with squeezed-out paint tubes and dirty brushes and adhesive removers and aprons and smocks and artist’s hand soap and brush washers and dusters and drop cloths and cleaning solvents and stain removers and sponges and steel wool and wipes and swabs.
May you be well, Elana. Thank you again for sharing your story with us.
Elana, I happened across your blog by accident. I can’t tell you how much your honesty, clarity and perspective impacts me. Your fight is courageous and inspiring. I wish you continued recovery and happiness.
Thank you,
Tracy
Wonderful article and I am so happy you are in remission!
Dear Elena,
I don’t personally know you. I came across your writing ” by accident.” I am so glad that I have. There is such honesty, tenderness and a will to live that get transmitted through your writings. I am thrilled to hear that you are in remission and I can’t thank you enough for sharing your experience with us so sincerely and beautifully. May your spirit continue to thrive in all landscapes of life, and may we have the sensitivity to witness it and celebrate it.
With gratitude,
Caroline Sabi
Elana * I don’t know you * But, Just wanted 2 give u a High 5…You are a Wonderful & Strong Person, My Son Beat A.L.L 13 Years ago & Now he is Happier than Ever * It was a Long Road thru Cancerville , But we made it & U Shall Too. Love your Words & Wisdom * Just Keep On Keeping On,
Namaste’
Deb
>^..^<
Dear Elena,
I am so glad you are on the path to recovery, even though that recovery will not be easy and yes you will be a different person. I believe though as a physcian, you will have a new understanding and that will be something that others will benefit from throughout your career. After my heart attack this past August, I too am not the same person and it is hard for others to understand. I am a little bit more selfish of what is important to me and really is that such a bad thing?
My favorite mantra: May you be healthy, may you be happy, may you be safe.
Elana.
Lovely post, You ARE on your way home……..Thanks for the reminder of how precious life is.
Your sweet, gallant and courageous soul inspires me..
Sat nam
Lisa
Elena,
All your writings (articles) are wonderful, your words and wisdom ! It’s good to hear your in remission, stay strong, sending you well wishes through your Journey! ~Kiley
Beautiful and so true about recovery from anything. Thank you!
Dear Elana, I’ve been working with an amazing neuro-Pdoc in Denver and finally have found my feet on the path. No I’m not BiPolar crazy I have lots of viral infections and when those were peeled away I have food allergies- my immune system was twerking like Ms Cyrus… finally I’m feeling the path beneath my feet- life feels so sweeet and precious again. Funny a friend was in grief that we could not enjoy wheat breads and corn tortillas together- I had just grooved on salmon and sweet potatoes and kale- I lost 22 lbs effortlessly- My body feels like my own again. Who knows what the future brings- but for this time I’ve been given a bit of time of that is a gift- I hope I don’t take it for granted too soon. XXXOOO Lisa
Hi Elena,
I always hesitate to respond on your blog because my words cannot come close to yours and I fear any kind of cliched response. I am a little further along on life’s journey than you, more than likely close to your mom’s age so I have had a few life experiences with which to measure some of your thoughts. First I am a reader and a lover of prose. You have a beautiful, lyrical writing style and voice that I find so very rare in the books and blogs that I read. So if you are a gifted psychiatrist you are also an exceptionally gifted writer. I hope that you will find ways to combine both these talents over the years.
I also want to tell you the story of my first husband who fell of a mountain while hiking in the wilderness area of Lake Tahoe. He was 16 at the time and partially severed he’s spinal cord at c-3. He was told he would never walk again or father children. He spent a year in the hospital and rehab centers. Eventually he was able to walk again with the help of crutches although never regained full use of his upper body. Like you he was also a gifted writer and went on to graduate from Willamette Universtiy eventually becoming a well known outdoor writer and publisher . But best of all Ed did father children against all odds who are now fantastic grown men and my sons Jeremy and Jamie. He was one of the most resilient people I have ever known as I suspect you are Elena. Take care and talk soon, k
Your articles bring me to tears every time…I watched my husband go through Chemo the hardest thing I ever did -I could not “fix” it. He never wanted to rally at the festivals he just wanted to “move on” and say WHATS NEXT? You will not remember this pain next year but as he says “just keep moving forward even its just a small step.
You are in my prayers
Chris
Hi Elana … I thought that you may possibly be interested in reading this book: https://www.goodreads.com/book/show/530886.Long_Journey_Home
The myth of Demeter and Persephone is very relevant to your personal mythos ie the way you are creating it and what is being created both alongside and within you simultaneously. Some of what is included in this book is utterly astonishing as far as insight into loss and return, and re-formation of the self/Self goes. Even if you just read only the ones which interest you, you will not be disappointed. Thank you once again for your courage – and the ripples of radiance your writing creates 🙂
Hi Elana, first of all we share a name! Secondly I am sending you prayers right now… My brother, who had non Hodgkin’s lymphoma over ten years ago, is fully cured ( with chemo and radiation) and planning his wedding in August. I hope you continue to make and keep writing.
Beautiful as always, Elana!
When you are past this, you may find that it was the most valuable journey in your life.
Thank you for sharing your journey. I did a year of therapy for cancer and could not have gotten though had it not been for the practice of doing my best to be in the moment, which holds the past and our hopes and fears for the future as well as this moment. Jon Kabot Zinn has a couple of guided mediations you might find useful (Lake and Mountain) that were really helpful to me. The idea of being a mountain, ancient, rooted, storms come and go, seasons come and go, but the mountain remains…. was really helpful. Yes, your life will not be as you thought it would be, but it is still your life. And every bit of it has the whole spectrum of joy and fear and pain and relief and beauty. I hope you can always look for the beauty… the warmth of the sun on your face, the tender embrace and missed kiss in the night, the flower, the fall leaf… they sustain. Again, thank you for sharing your journey. I will travel it with you.
Elana – you most definitely will be changed, but for the better. Maybe you will specialize in treating patients with life-threatening illnesses. During my cancer treatments, I have stumbled across several medical professionals who are cancer survivors, and their words of true understanding were so very helpful to my overburdened heart and soul. I know that God has a plan for me as a result of this. My mantra is, I will talk (about my cancer) to anyone who wants to listen, and I will listen to whoever needs to talk.
Prayers and love headed your way.
Hey Elana!
Sending you energy and love from Germany.
I hope you will get better soon!
I’m sure there is a sense in everything you are going through right now and one day you will know it. Keep holding on and never forget how beautiful and precious life is (I know that this is so hard sometimes, I have to learn it myself because so often we are not aware of it until something bad happens)
Have you ever tried Reiki? I guess it might really help you and your boyfriend. And also in your healing process.
Prayers and love,
Sandra
Hi Elana, God I know what you mean by tired. Bone tired. And waking up in the middle of the night. I used to do that and was so frustrated that I couldn’t fall back asleep. But during my treatment, i learned to accept it and make the best of it. I get up and play a few tunes on my fiddle. I’m 2 years out now, getting ready for my next scan. I guess after 5 years I’m cured? Thats what the onco told me. Cancer sucks. I hate when people would say, “your gonna beat it”. I’m not beating shit. I do what they suggest and hope for the best and accept the results. Believe me the Dr visits lessen. They are all encompassing. Some don’t give a shit about your time and you wait for hours in a room with other suffers. But you get better and have incredible empathy for the new guy just starting out. I had radiation. no chemo. head and neck cancer. But I lost a third of my hair before the cancer. So at least yours is coming back! The only way mine will is if I join the hair club for men………Be well