Evey: “You did this to me? You cut my hair, you tortured me… you tortured me!”
V: “You said you wanted to live without fear. I wish there was an easier way, but there wasn’t.”
–V For Vendetta
A month ago I logged in to my medical record to check the results of a PET scan part of a neurologic workup my oncologist ordered. I had called his office about the results, but as the end of the day neared I become inpatient waiting to hear back. All of my other scans had been normal, and I assumed this one would be, too.
I logged in and opened the radiology report. I scanned down and saw this:
There is a triangular shaped mediastinal soft tissue prominence, which although it has the triangular configuration of thymus, has increased in size along with interval increase in FDG uptake.
I paused, confused. My head tilted sideways. My fingers lifted off the keyboard for a moment. I scrolled to the bottom.
Impression: Local recurrence is likely.
I closed the report and sat for a moment. I waited for my heart to stop beating. It didn’t, so I paged my doctor.
He called back almost immediately and reassured me it was “probably” not a relapse. Most likely, he said, it was a condition called thymic hyperplasia, where the thymus grows abnormally large in response to chemotherapy. We don’t know for sure, he said. We would need to get a repeat scan in a month to see if it was growing.
At first we were both reassured by the fact I was not having any symptoms in my chest. The next week, however, I started feeling sicker. I hoped it was anxiety, but the feelings were eerily similar to what I remembered from when I was first diagnosed. My heart would randomly start racing, even when I was sleeping. I felt like I couldn’t catch my breath. My chest felt tight, like it was being squeezed.
When I told my oncologist these symptoms, he was concerned, and urged me to move my CT scan up sooner. But I didn’t want to. If I had relapsed, there was nothing I could do. I still had time that fear was not going to take away from me.
When I was first diagnosed with Lymphoma in December of 2013, adrenaline kept me going for the first few months. I ran out of gas and spent the next six months in free fall. Every day was a nightmare from which I couldn’t wake up.
A crucial difference between being ill and being close to someone who is ill is that if it is not you, there is always escape. You can be close to the fear, you can touch it, you can assuage your curiosity, but you can always turn away when it’s too much. For me, there was no escape. I waited for the fear to kill me.
But it did not—days passed, then weeks, then months, and now almost two years. New insults were thrown at me faster than I could brace myself. They are still thrown at me now. I lost my hair, my body, my beauty, my work, my mind. I lost relationships, I lost family. I lost my purpose, my confidence, my autonomy, my ego. I got some of those things back. Others I got back only to lose again. I make mistakes, and I am wrong; I am humbled by my smallness and insignificance.
But—I am no longer afraid. Not because I am brave, but because the fear ran out. I experienced every nuance and nook and cranny of fear until there was none left. Now, there is only death or courage; I am still alive, and so… well, you get the idea.
In the last week I took my puppy to the park, I walked to the ocean, I played the guitar and ukulele for the first time in a year and a half. I went to my residency retreat in Lake Arrowhead, I made new friends, I reconnected with old ones. I fired a shitty employee and hired a better one. I asked for help. I gave advice. I went on some dates and told four men “no” and one man “yes.” I watered my plants, because hey, if I’ve relapsed I’m probably not going to remember to water my plants for a while. I wrote all of this post, except the end. Then, this morning, I went to UCLA for my follow up CT scan.
The report reads:
Interval decreased size of triangular shaped soft tissue in the anterior mediastinum.
Impression: May reflect thymic hyperplasia. Recommend close attention on follow up imaging.
So I am still here. I live to fight another day. I live to live another day.
***
Photo by Tess Mayer
Elana –
thanks for sharing. I’ve been missing hearing from you. I sooooo get this and yet we are different people with different cancer stories but the fear is the same and so is the courage.
Sending you love.
Leah
Your posts are so raw and beautiful. I am thankful you are still in remission and hope that you remain so. I love your writing and profound words of wisdom. Thank you for sharing.
Yes, Cindy. I agree!
“I live to fight another day. I live to live another day”.
May you continue to do so for many many years to come. I also listened to your song- I would say that yes, you are enthusiastic but you are CLEARLY anything but average as you have proven over and over again. What a Schmuck!
You had me crying at this entry! I was scared, for you and afraid to read the words. I felt myself rushing thru them to the end, to find out what happened. I am so glad you are ok, and will continue to inspire us on your journey. Know at least that you touch many souls….❤️.
Dear Elana,
You are nothing short of brilliant. This post spoke to me and woke up an understanding that I was truly at a loss to comprehend. I am close to a child who is so ill and I can, as you put it so well, escape and yes, turn away or retreat when it gets too much. I have felt anguish when she feels the fear, but I don’t know the fear, no.
Thank you Elana, for applying your Self to yourself. You remain a great educator on the ways of Zen psychiatry for sure. We live to live another day!
Wow. What a powerful post and a testament to the power of fear AND the power of courage. I so appreciate you and thank you for your openness along the journey.
Thank you as always for sharing what must not always be easy to share. Since the start of your journey, my husband had a cancer diagnosis and after radiation and surgery, has had two clear followups. While I do not have cancer, it hit closer than I expected. I pray for you and all cancer warriors. Thanks again!
Elana, think of you often. Thank you for your courage. Hang in there in the mystery of it all. You have so much to give with all that you have lost. A paradox and true.
astounding. beautiful.
You continue to be my heroine…I love how real you are…I hope to meet you in person one day and I hope someone who truly deserves you and has the courage to walk this raw path will show up and together you can enjoy whatever this life has to offer…for however long!
So glad you are ok!! I have found so much insight and strength in your posts as I have been going through the cancer journey myself. I am doing well now, and hope you stay that way as well! Keep writing!!
As others have said raw and very honest. While your journey is difficult your writing is amazing and beautiful. Really no words….Thank you
Hope your health carries on.
Now, there is only death….and courage. Beautiful… I live to live another day. Thank you so much for your real raw-ness.
The power in sharing your truth, is a doorway for all of us to face mortality. You help us with grace and courage. Thank you for your spirit and your ability to open to the depth of your being.
Elana……I was diagnosed with a more indolent but rare form of NHL called Marginal Zone, Nodal NHL….Pet Scan showed in Spleen, Abdomen ( couldn’t feel them ) and groin, under arms and lots in the neck which were pretty large and out there. I refused treatment and became a strict vegan and take Reishi Mushroom Extract, Green Tea Extract, Curcumin, Genestein and others that you can check out on PubMed….Juiced for a year and now do Green Drinks. It took a year and a half and the nodes in my neck are all gone except for one behind my head. The ones in the groin are gone and I can feel a flat one deep under my left arm still…..SO Something happened…..Maybe you want to try it…….There a few great sites I can send you IF you want them. The Book Radical Remission by Kelly Turner PHD is great too. Good luck. There is a time for killing the cells and there is a time for Healing the body. IF you are in a canoe and it springs a leak you can bail all day (chemo) but unless you plug up the hole the boat will eventually sink with you in it. SO good luck…Barry [email protected]
Wow. Love your visceral writing. It brought me back to the EXACT same scare that happened with my daughter’s scan 6 months after treatment for T-cell lymphoma years ago. I had suppressed the memory of that scare, because as you so eloquently write, you get to intimately know all the colors and flavors of fear along the journey. Bless you!
Elana, thank you for your words. All other challenges seem insignificant as I read your post. I am so grateful to know that you exist.
..Sherry
Damn, you’re good. I fought the urge to skip to the bottom of this post, reasoning that if you had to wait a month for your next scan, then I could tolerate the few minutes it would take for me to read several paragraphs before learning the outcome. As an 18-year cancer survivor, I know the anxiety that comes with having questionable test results and what it feels like when the fear runs out (your terminology is fabulous). Here’s to living for another day!
YOU ARE AMAZING. Other commenters say it better than I do, thank you for your incredibly vulnerability, strength and for sharing your journey.
Thanks
I wish you continued Health and Happiness 🙂
You are my hero Elena. You really get it, and you are beautiful, brilliant and brutal in your honesty with yourself and with us. You have my vote Elena and my good wishes and positive energy to fuel your courage.
think of you so often.So glad you are ok.
Thank you for your post
Marie-sara
You are truly a force of nature girl… I think of you often and when you don’t post I pray that you are well and happy. Thank you for your brave testimony. Best wishes, Silvana
Great post and very inspirational. Thank you
I have been following you on this journey from your first entry. Your courage and honesty are amazing. I pray that with each new day you find more strength then the last. Keep writing an we will keep reading.
“Thank you for the gifts I have been given and for those I am about to receive…”
Gosh, you are so right that “You can be close to the fear, you can touch it, you can assuage your curiosity, but you can always turn away when it’s too much.” It’s the truth, and there’s no way around. I’m so inspired by the way you’ve chosen to keep living despite the potential bad news looming over your head. That’s pretty wonderful, even if it’s just because your “fear ran out.” Hope the man you met is a good one!
I have been following you since the start of your journey. I think you are a spectacular being with more courage than anyone I have ever met. May god be with you on the road, no matter where you are going.
My heart skipped a beat.
Normal sinus is back! Good to know it was nothing serious! Stay strong!
I often wonder if on the end it’s not the fear that really gets us instead of the disease. I was devastated at the beginning of your article and am now thrilled by the ending, thanks for a powerful article. Go and out live life and make memories.
Alana, you are an inspiration. Thank you for writing and sharing.
Elana,
Thank you for such a beautifully-written post. Your note is giving me some much needed courage right now, too.
Dear Alana,
I found out about your posts after being diagnosed with breast cancer (a recurrence after 17 years, thank you very much!). Your authentic perspective in describing this roller coaster ride has been so helpful. I start “dense dose” chemo this Monday and will be channelling you as I start this journey.
You have been through so much and it feels to me like your writing beautifully mirrors the person who continues to evolve. Your spunk and sparkle are amazing.
Mary
AwesomeSauce * Big Warm Healing {{{{{{{HUGS}}}}}}}
I gasped.
Thankfully the last lines bring calm, future, hope.
You will be alright. It will all be alright ….
Everything you do is with 200% . I started following your blog before you were sick, and was amazed by how totally engaged you are in everything you do. I thought to myself, this is the therapist I want. Your passion and vulnerability is exceptional. I was saddened by your diagnosis, but awestruck by your strength and and continue to be so inspired by the way you live your life, good or bad, you give it your all. I don’t think we can ask more from ourselves .
Hi Elana,
So so scary. I read one of my scans and had a very similar experience. I didn’t have to wait a month though. I appreciate your take, and your words. Thank you for putting your experiences out there, it means a lot.
My Best to you for health!
Vickery