It’s been so long, I’m not sure where to start.
I haven’t written because I’ve been in a hole, and to write about it would have made it more real, and I felt ashamed about what was happening to me. I was ashamed at how deep I had fallen.
My last round of intensive chemo finished in early October, and my oncologist told me I could consider stopping early and not finishing the last round (since the protocol I was only was four months longer than what is typically done for someone with my cancer at Stanford).
I thought about it, discussed it with family and friends, discussed it with other doctors, and decided it was time to stop. I intuitively and intellectually felt my prognosis was excellent, and to do any more would do more harm than good.
I thought I would be thrilled to be done, but instead felt terrified. (Let me take this opportunity to correct any misconception you may have about what it feels like to finish long stretch of cancer therapy. It does not feel exciting. It feels anti-climactic and scary because the main thing structuring your life for as long as you can remember has now ended).
Then there was the night, a few weeks after I finished chemo and days before my parents were leaving the country on a trip they had planned before I got sick, when I had the scariest moment of this entire cancer experience.
It was around 9pm and I was eating a popsicle. I started to notice that something felt wrong with my mouth and I couldn’t quite get a grip on the popsicle. I threw it away, and then my mouth started to tremor, and then over the next few minutes my jaw muscles tightened into a spasm and my mouth clamped shut.
The force was so great I thought I would bite right through my face, or that my teeth would chip, and I shoved my fleece into my mouth to mitigate any damage. As each minute passed my jaw twisted tighter, and tighter, and tighter. I felt like I couldn’t breath. I didn’t know what was happening or when it would end.
My mom drove me to the ER, and thankfully we got in quickly. There are only so many things that cause this kind of reaction, and the doctors thought it could be from a low calcium level. They told me it would take an hour for the ionized calcium level to come back, and they might as well have been telling me it would take days, because every minute felt like torture. I made bargains with myself, like if God took away my pain I would never complain or be unhappy ever again. I closed my eyes and tried to calm myself, because the panic attack I was simultaneously having was twisting my jaw even tighter. I cried to my mom that I thought I was going to die.
I kept begging for medications—anything to make me feel like I wasn’t being tortured—and at some point the doctor mentioned Benadryl. For the first time my physician brain kicked in and I realized I had taken a nausea medication hours earlier that can cause this kind of reaction, called dystonia, for which Benadryl is the treatment. They gave me Benadryl and my jaw immediately released. The whole thing lasted a few hours. It was not a new medication and I hadn’t taken more that day than I usually took; the side effect was rare and would have been impossible to predict or prevent. So how could I not be terrified that something else bad could unpredictably happen to me?
The first effect this experience had on me is that I became afraid to be alone—especially bad timing because a few days later my parents left the country on their scheduled 3-week vacation. They arranged to have me stay with family friends, but their absence made me very, very uneasy.
A few days later I was supposed to fly to San Diego myself for a conference I had planned months earlier. Unfortunately, the second effect this experience had on me is that I became afraid the fly. I panicked the day before the trip was scheduled, but pushed through my anxiety and went anyway. I spent most of the flight having a panic attack and crying. And then I got to the hotel, where, sitting alone, I spent most of my time having a panic attack and crying (this was my birthday, by the way. Cue the world’s smallest violin playing the world’s saddest song just for me). I flew home the next day. I felt like a failure that I couldn’t follow through with what I had planned.
Unfortunately, getting home didn’t stop the panic attacks. The idea of doing anything—waking up, leaving the house, interacting with people—felt terrifying. Even when all I was doing was sitting on the couch, waves of panic would rise up and drown me.
When I was first diagnosed almost a year ago, I was under the delusional impression that I would get some chemo, be cured, and then move on with my life. Now I see it’s not that simple. I have experienced pain I can never un-experience. I will never go back to being the same person I was before. That Elana is gone.
If you can believe it, it never really occurred to me until recently that I could die. I’m sorry if pointing that out makes you uncomfortable (Don’t say that Elana! Stay positive! Cue me gouging me ears out so I don’t have to listen to such nonsense). Contrary to the belief of some, talking about death doesn’t make it more likely to happen. You can spend your whole life never considering death—I assure you you’ll still get there like the rest of us.
After all, how could I process the experience of having a life-threatening illness without thinking about death? Without considering how fragile life is? Without understanding how mortal I am?
I now see, though, that while we all face death, and pain—our natural state of being is wholeness. I was shattered into a million pieces, but over the past days and weeks, slowly but surely—and without having to do much but be patient and let time pass—I have started to come back together again.
I’m not having panic attacks anymore. I’ve started to drive, a little. Sometimes when I think about the future, instead of feeling terrified I’ll never be normal or capable again, I get excited about the possibility of working, living on my own, falling in love, experiencing joy, living.
I had chosen not to finish my last round of chemo, but after getting some conflicting information at a recent appointment from my oncologist, that decision is now up in the air (yes, this did kind of feel like I was being mind-fucked). So I may be done with chemo, or I may have the hardest round ahead of me. I will make a decision after doing some research with my family and doctors and considering the risks of putting more poisons in my body versus the potential benefits of having a greater chance at survival. Either way, my job right now is the heal as much as possible, so that if I do complete the last round, I will be in the best state to handle it.
I have learned I am strong. I have gone through one of the hardest chemotherapy regimens that exists and come out on the other side. I am resilient. I have fallen into the lowest pit of despair and crawled out. I have been broken, but someday I will be whole again.
Dear Elana, thank you for being so real, and telling it like it really is. You have put into words some of my own experiences with lymphoma, and it so helpful. It is so true that this experience is completely life-changing. I’m so sorry you had the dystonic reaction – that sounds awful. But I’m so glad that you’re realizing how strong and resilient you are. Sending lots of love and hugs your way. Take good care.
Jen
Elena, I wish that I knew you well enough to be able to hold you close, to look into your eyes, to cook you a meal, to rub your feet. Your writing is truthful and real and heart-wrenching, and your journey has been arduous. That you share it with us–with such honesty–touches my heart. I am sending an abundance of loving and healing blessings.
What was the conflicting information?
so glad to see you are writing again. You are one of the bravest, strongest, powerful writer I’ve read in a long time. your raw honesty is a welcome relief. I wish nothing but the best for you and hope your strength will see you through. Beaming you good thoughts as always.
Barb in Minnesota
Dear Elana,
Thank you for being so genuine and speaking from the heart. I have no words to describe how much I admire your strength. You are wonderful and I’m grateful you’ve decided to share your journey, even if it’s not easy.
Love,
Marieta
Thank God you are OK. I was wondering and figured something was keeping you from sharing the love with all of us. Yes, those panic attacks can be TERRIFYING. I called up a physician friend at 3 am one night and asked his sleepy wife to tell him to meet me at the ER because I wanted to be put to sleep for GOOD because the terror of living for another hour was just unbearable. I was saying good-bye, I loved everyone, it was OK, I just had to escape. Well he met me there all right and gave me an IV to put me to sleep (no doubt some valium) and I was surprised when I woke up still alive four hours later but feeling much better. No body met me telling me it wasn’t my time, I was forced back into life again. I later learned I had an anxiety problem exacerbated by cancer. That was five years ago and although I got over it, it remains a terror in my remembrance.
Happy Birthday! Next one will be much better, I promise because it couldn’t have been much worse. Hope you are able to manage a chuckle and smile and look ahead. You are not broken, just bent a little. Nothing that can’t be straightened out with time.
I don’t blame you for not wanting the chemo, let your body heal up. Of course you can never return to the innocent world of not really knowing what cancer is like, but the terror softens as you get further away from it. I am just glad to see you are back from your long dark tunnel and the daylight welcomes you back into life. The dust settles and everything keeps spinning around.
Thanks for letting us know sweet girl! Shelley
Elana,
Sparing the details, I have chronic pain. Before this happened two years ago, I was a dynamic mathematics instructor at our local college, a textbook author, a funny entertaining high energy dynamo. Then, I wasn’t those things. I was taking narcotics and spending hours on the couch. At about four months into it, when the doctors decided that there was no diagnosis, just treatment, I considered suicide. Then, I realized that suicide meant being dead. It wasn’t a grand gesture or a statement of dispair. It was just the end. I learned to meditate (Dr. Kabat-Zinn) and learned to do some self-hypnosis. This doesn’t change the pain but it gave me some strategies for making it through the worst of it. In August, my doctor put in an intrathecal pump. I had such hopes because the trial injections worked very well. But, the pain has been increasing despite it. If I can’t work full time in January, my sick leave is exhausted and I lose my job. Still, for now, it is better to have the pain and be alive then to be dead. Even if I can’t be the same person with the same life that I had (and worked very hard to achieve), at least I will be alive. There is a new different life in front of me. I want to be there for it.
Pain and nausea and anxiety are exhausting. Poisoning the cancer is hell on the rest of you. Side effects are just horrible. Your body is broken but your spirit is not. I wish I could hang out with you. We could laugh about something. Keep using your wonderful intellect to make the best possible choice for you. Keep dreaming. Keep writing. Share this struggle with us.
Good old benadryl, good to have on hand.
I feel for you, wow, that is shockingly scarey. Obviously you are amazing. Thank you.
Dear Elana,
I came to your blog for two reasons tonight. I knew it had been awhile and I was concerned for you. Secondly, I’m a 25 year recurring lymphoma survivor struggling with late effects of chemo and rads. Invasive breast cancer being one, cardiac and pulmonary issues among the others. I haven’t been feeling well and that produces anxiety and anxiety doesn’t make me feel well. Which came first the chicken or the egg? So I was hoping to find an update from you to take my mind else where. I can’t believe I checked in right after you posted.
I’m thinking my emotional immunity is compromised now and I think your is improving day by day. Mine will recover but something undoubtedly will compromise and test it again.
Reading your words helps me and I’m grateful you share them with us.
I was just thinking of you tonight and spoke your name – hopped on the computer and there you were! I was honestly shocked at the timing. Thank you for ALL . This post has been so validating and we continue to pray for you every night. I had no idea how great life was before cancer – now I do- I hope and pray we all have long lives despite cancer and that they are strong and full. we love you.
Elana, you are so brave and I thank you from the bottom of my heart for putting into words and validating my feelings too!! I too was told by my team of doctors to stop after 9 rounds and not complete the 12 I was scheduled for. Friends wanted to throw parties but I was more anxious than I had ever been when I stopped the chemo. (It’s been 4 months) Its been a bit of a struggle getting back to “normal” as the anxiety is heightened more than before. Weird huh – my only suggestion is to give yourself time and start treating yourself to things you enjoy. I even tried mindfulness and I’m currently doing acupuncture I’m opening my mind and body I had to learn (with a lot of frustration) that I could not do what I had before I had cancer and I still need to listen my body. I hope that everyday brings you a bit more strength,happiness and health. Take care of yourself and again thanks for writing tonight.
All smiles for you, Elana. Thanks for continuing to write, I’m sure I speak for all of us when we say that we were thinking about you and hoping you were okay. To stare death in the face, to truly stare it in the face and know your own mortality and vulnerability… that’s not something I want to experience. The fact that you found hope despite staring death in the face could be life-changing for anyone in a similar situation reading this blog, and you’ve definitely given me something to think about too. Again, thanks for your vulnerability and honesty.
Elana I’m here in Ireland, 4.30 in the morning just read your entry. I’ve no words to describe how I admire you or words to inspire you. But I will say keep going you have so much ahead of you, you inspire me so much. Don’t be hard on yourself. I send you love and healing thoughts, Sandra xo
What kind of conflicting information? What were your protocols?
Elana
You are so brave and so real. Sometimes we (I) think no one understands what we are going through. It means so much to read that you feel the same. Your words are comfort to many that we aren’t alone.
I too wish I could hug you and tell you everything will be ok.
What I can do is thank you for your honesty and send you love & light.
I wish you the very best and pray that with each day you feel better and stronger and happier.
~Jenn~
Thank you Elana. You are a gift to the world.
Sending you love and blessings (from Ruth in Australia)
Good to hear from you! It seems I’m not alone in wondering how you are doing. As always, thank you for your words. Peace and love to you.
Hi Elana,
I have never commented on one of your posts but have followed them since the beginning. I can’t remember how I came upon that first blog post you did, but I was captivated by your story from the start, just felt I never had anything worthy to write to you that wouldn’t just take away from your experience rather than add anything meaningful. It can be hard to read your words as they explain in detail one of the biggest fears in my life, but it is amazing to me the way you continue to allow us in in such an honest way. I would never presume to tell you what you should or should not think, feel or say. I suppose I just wanted to say hello and let you know I am here. I’ve not got any fantastic life changing advice or words of wisdom, but I am here. (Well, in Northern Ireland but you know, here.)
Love, Holly
Dear Elana:
What a brave soul you are! I know in the recent past you have been very afraid, but you have not only made it through, you have continued to share your wisdom with us. I hadn’t been keeping track, but somehow realized that we hadn’t heard from you in awhile…now I understand why. I love your strength (yes, strength) and honesty. Stay strong and stay with us.
Much love,
Jim Ross
Dear Elana – as others have said, I’ve been thinking of you and praying for you. I’m so sorry you had to go through these most recent terrors. I am glad you came out on the other side.
I’m Starting to think part of the new normal is that these things are going to happen. I am now more than 15 months post-chemo, 13 months post radiation and only six months post herceptin for breast cancer. One month ago, I was diagnosed with lymphedema in my breast. I was just getting to the point where taking tamoxifen daily didn’t elicit the “I had Cancer” thoughts. Now, I have to go for therapy twice a week and do massage on my scarred Breast twice a day to get the fluid to move and make the pain and swelling stop. Talk about angry. I made it through all the tough stuff and I’m still in treatment (and I, too, have the world’s tiniest violin).
In the great scheme of things, lymphedema is manageable, but in my head, it’s a constant reminder of hearing, “your type of tumor has a 70 to 80 percent cure rate.” What do I do with the 20 to 30 percent death rate?
I guess all that said, i’m still processing, getting less angry and working my way through. Oh, and Xanax is my friend and you might want to consider some anti-anxiety meds. I only take as needed and it has been a godsend.
Please take care and know that you are in my prayers.
Moira, Dr. Brian Czerniecki at the University of Pennsylvania has a breast cancer vaccine for Invasive Her2+ BC. I got it five yrs ago in a clinical trial for DCIS but now he has a new trial open for after chemo to prevent recurrence. Email me if u r interested in it. [email protected]
Dear Elana,
I was relieved to find your post this morning. I was worried about you and wondering how you were doing.
I can’t tell you how much I admire your strength of character and your courage. How you can still find the strength and the will to share your terrible experience with all of us, amazes me. I think I would simply roll up in a ball in my shell, close it and keep the world away from me. Your generosity is endless. I wish I could welcome you here in Switzerland so that you could enjoy the clean air, the magnificent view on the lake and the Alps Mountains covered with snow behind. I wish I could do something for you to ease your suffering and simply show you that even if I will never be able to know and fully understand what you are still going through, you are not alone. There are people all around the world who truly care for you .
You are right, you are incredibly resilient and courageous and full of will. And no, your former life will never come back again but and because of all your qualities, you will someday start a new life, and it will be like you are born again. You will find a new love, resume your Professional activities, you will be a new person. But the real, true and loving person you are inside will always be there caring for others.
Thank you Elana. You are a constant inspiration to all of us.
Love from Switzerland.
Hélène
My prayers and thoughts are with you on this journey. Thank you for sharing and may god give you continuous strength each and everyday.
Elana, I’m glad to hear from you! I love the world’s smallest violin.
Elana, I’ve been wondering how you’ve been doing. I check the blog every day for a post. I figured that no news was bad news, unfortunately. You’re continuously in my thoughts and prayers. Hoping that you find some peace with your decision, whatever it may be. Sending hugs from Louisiana!
You WILL be whole again. And so very happy again. Never lose sight of that! Mucho amor para ti!!! Y mucha fuerza <3
Elana,
You know one of the things I am thankful for this Thanksgiving? YOU!
To see your wit, your intelligence, your vulnerability, your fear all peaking out from behind the clouds and all living on the same plate (with cancer being the nasty vegetable we pushed around on the plate when we were kids). You have such a powerful way of putting life into words and when your book comes out, I’ll be buying it.
I sure can relate to the anticlimactic aspect of your experience. The day before Thanksgiving marks the first anniversary of my surgery and cancer diagnosis. Though I finished my treatments 16 weeks ago and had an unremarkable CT scan, I somehow feel as if I’m in limbo waiting for the cancer to come back or NOT to come back. Which is it? It’s like waiting for test results all over again. That’s just exacerbated by the exams and tests every 8 weeks. I’m working on a way to reframe this part of the journey so it doesn’t suck more life out of me through worry. I’d better look at your workshop notes again!
Thank you for your willingness to share such personal events and thoughts. It reminds me that I am not alone in my experience, (and neither are you).
With admiration, respect and BIG gratitude!
Cheryl
Good heavens, Elana!
So THANKFUL you’re recovering from the *interesting* experience. What occurred is the reality of getting through the unexpected, and you inspire us in having shared your story.
KEEP GOING, and post when you can. xoxo
mari
Elana,
I check your blog regularly and have been worried about you and sending you positive thoughts. I was relieved to see your most recent post. I can relate to some of your experiences. I’ll keep holding you in my thoughts. So glad some of the pieces are coming back together.
Ashley
Elena-
Sometimes I feel helpless that I can’t help you in your pain but know that I am a whiteness to the intimate details you share and I say prayers and send you love from Marin County.
And I will be whiteness to your recovery and whole ness as you continue this journey. HANG ON! A year from now you may be in Nicaragua practicing tele psychiatry and teaching yukalele lessons!
Dear Elana,
I don’t know what to say as I feel that whatever I might say is just plain unhelpful or something you have already heard a billion times. That way, I just want you to know that your writing helps me with my life. I have a severe anxiety disorder and tend to think I’m too weak to handle it, that I can never change or that I am the unhappiest person in the world. By following your writing I have realised that there are people with problems a lot more serious than mine and people who have come alive out of things they would have thought impossible. In the end, you make me realise we are much stronger than we actually think we are and that everybody can see a silver lining, even through their darkest of days. Thank you for showing me that survival is possible and that hope is allowed even in extreme situations.
““Be patient toward all that is unsolved in your heart and try to love the questions themselves, like locked rooms and like books that are now written in a very foreign tongue. Do not now seek the answers, which cannot be given you because you would not be able to live them. And the point is, to live everything. Live the questions now. Perhaps you will then gradually, without noticing it, live along some distant day into the answer.” Rainer Maria Rilke
PS I saw your name on the SD conference attendees list. Sorry I didn’t get to meet you in person.
When i started reading yr post i said to my self “shes getting stronger” as i was tearing
How happy i was to read the end of the post, where u recognize it yr self.
You inspire me so much
Reminding me of how miserable i was stricken with MS, laying on the couch, contemplating death..
Now natural healing n winning getting my shatered self back piece by piece.
Keep up n youll be kept up
Love to you dear Elana
Dear Elana,
Like others above, I too have been thinking so much of you, concerned. (I practice being patient). I am truly sorry you have to go through all this. Truly. But is it wrong to share that I actually smile or even laugh when reading some of the things you share because it is just so pure, genuine, and you have such a great gift for writing? If someone could compile your blogs for you you could certainly publish them (for income).
You help me to think about what is left when loss seems to be all we can identify. Being whole probably doesn’t mean to be the same forever, but gosh, i kind of wish it did sometimes. You will certainly become whole again, even if it is different than what you thought your personhood was evolving into. Your strength is magnificent, and your insights are amazing. Honestly, I consider your words as profound as the Buddhist monks I’ve heard. IF not more so (i can identify with your life more than i can with a monk’s).
Please be well. I hope your day has some ease. Thank you for all you have given me to ponder through your sharing of your struggles/accomplishments . . . even though I would be happy to be more ignorant if it could have spared you the misery.
Dear Elana,
Just know that you are already whole. All you need to do is recognize that your wholeness never left, that your healing will just be more apparent to you with time. I honor your courage and am very happy that you have shared your Self with us. Namaste.
Elena, Thank you for being so brave and honest and writing such difficult truths about fear and pain and that “keep you chin up” just is not what people who are suffering need to hear. Pulling for you and look forward to reading your blog whenever you can write.
You are a real trooper in my eyes. I can only hope and wish that in time you will be whole again. You may never be the person you were before but that is because God wanted you to be a new person because God has bigger plans for you. I know because I am a 3 day cancer survivor now and the old me shed its skin just as a snake does. Hang in there and as always you have my prayers.
Glad you are feeling better & many Big {{{{HUGS}}}}
Elana,
So glad to hear from you. You’ve been in my thoughts. I admire your resilience and your openess to the world and yourself about so called weakneses. These are actually very human situations and you are really brave to look them in the eye and embrace difficulty.
Virtual hugs A psychiatric resident many miles away,
Jessica
For some reason my previous message got lost, I hope this one makes it through.
Yes, someday you will be whole again!!
As an aside, thank you again for the wonderful guide you wrote for cancer patients and those close to them. I just heard minutes ago from my brother and wife in LA about their closest friend, Gabrielle, who was just diagnosed with mesothelioma, and I’ve passed along your writings to them.
At last …..someone who understands why I grew to hate that breathless admonishment from others, “STAY POSITIVE!!!” I finally started dryly responding with a shrug of my shoulders, “If I feel like it”. I would think to myself, ‘why do I need to stay positive all the time- I am the one with cancer- please don’t advise me how YOU think I should think and feel”.
Keep fighting girlfriend!! All of us out here, we love you!! You are not alone, you are loved by so many.
“I have learned I am strong. I have gone through one of the hardest chemotherapy regimens that exists and come out on the other side. I am resilient. I have fallen into the lowest pit of despair and crawled out. I have been broken, but someday I will be whole again.”
YES, YES, YES…all these things and more Elana. Wishing you increasing health and strength; giving thanks for you and your spirit in the world.
Eleana, you are a fighter, a brave soul. Girl, you are made of steel! I admire you so much.
Hugs and love for you.
Muchos besos y abarazos, amor, fuerza y oraciones, desde Guatemala!!
Hello Élana,
Most have echoed my thoughts about your journey over the past year. I appreciate your sharing what has been going on since some time has passed since your last post.
You certainly have touched many with your life. Strangers and I imagine those who are close to you. I do hope the coming days are easier and your passage through this time in your life becomes lighter.
Thank you,
Lori
You are brave, Incredibly strong and resilient. Thank you for your sharing.
Elana- I have been thinking about you. Sending you much aloha juju and hoping that this rough patch will pass soon for you. Until then, fall apart if you must, as often as it is necessary. Remember the title of your book. It is called Holy shit… and I have cancer for many, many reasons. Resiliency is not hidden in the fluffy, good days we go through. It is found while we have no idea how we are going to take our next breath without falling apart or dying, and doing it anyway. Life will make sense to you again, eventually. Hang in there. Kind regards, -Bea
Elana – I keep checking in to see if I may have missed a post. Typically no news is good news but I’m not finding much comfort in that rhetoric. You and your gritty diction are missed. Sending peace, strength and love. – Leslie
This was the most upsetting yet freeing post I have ever read. I have a very rare lung disease that has become uncontrollable with any know treatments for lungs. The result is that I spend the vast majority of my time at home, with all the windows and doors closed, central heat/air/fan running to clean the air. I rarely am able to go out. I don’t get to just talk to people anymore, since on whiff their preferred health, beauty and/or laundry products could literally take my breath away. I don’t go out alone. I no longer drive because I always have trouble breathing when I go out and need help. In other words, I do nothing, see no one but my husband and am a shell of my former self. As this has gone on, I find myself in a very deep hole. Afraid to try to go to the new church my husband found, afraid to try to drive, afraid to talk to anyone new, to go to most public places, or to just leave the house at all. As a result, I have been hard on myself about these growing fears. I even began considering that I could die. I have known this academically for years, I just hadn’t FELT it. And what a difference that makes, eh? Your piece makes sense and I am really truly grateful. You are a professional and you went through similar feelings. When so much about one is abnormal, feeling normal can be so reassuring.
I hope things are much better with you now and that you are well on the road to enjoying the new you.