“This existence of ours is as transient as autumn clouds
To watch the birth and death of beings is like looking at the movements of a dance
A lifetime is like a flash of lighting in the sky
Rushing by like a torrent down a steep mountain.”
– The Buddha
What would you do if you had 10 years left?
This is a question with which I am intimately familiar.
During the worst moments of my cancer treatment the suffering was unrelenting—waves upon waves of physical and emotional pain knocking me down before I could get up again. There were mouth sores so raw I begged a nurse to give me novocaine, physical pain that woke me up in tears, cramps of nausea that left me looking at food, starving, but unable to eat it. Then there was the psychological terror of knowing I was living a nightmare I could not escape. It was in these moments that I’d play little games in my mind.
The first little game I played was imaging to whom I would give my cancer if I could make someone else bear the burden instead of me. I’ll be honest and tell you there was no person, other than my brother, whom I would not have cursed with the worst fate imaginable if it would have made my suffering end. My parents? Well obviously, they would have taken it from me if they could. Acquaintances? Sure, of course. What about friends? Close friends? Friends’ children? Oh yes, all of them, too.
I found it funny (in a morbid sort of way that one finds things funny in these kinds of situations) that people reading my blog called me “brave” and “courageous,” when little did they know I would have killed them, too—would have wrapped my hands around their pretty little throats and strangled the life out of them if it would have given me one moment of relief.
The other little game I’d play was to pray. It was a game because I knew no one was listening, but still it gave me some measure of comfort to imagine there was a higher power out there with whom I could bargain—perhaps we could come to a mutually agreeable arrangement?
Oh, I made all sorts of promises. At first I promised that if I survived I would never make another mistake, never hurt another person, because after so much ceaseless suffering it’s hard to come to any conclusion other than you must be here because you earned it, and because you deserve it.
The worse things got the more I escalated my promises and reduced my demands. If only I could make it through this horrible experience I wouldn’t need much. Couldn’t I just have 10 more good years? I would live to 45. And you can do anything in 10 years!
You could build a business, learn any skill, make a lot of money. You could write a book… multiple books, maybe even win a Pulitzer prize! You could get married, start a family even… you couldn’t live to see them grow, but still, I was in no position to be greedy.
Well, I survived, (the details of how are described in other blog posts), and since then my promise has never been far from mind. I set about reconstructing my life with a relentless pressure believing in my heart I had only 10 years to accomplish all I was meant to do. How could I not keep my promise when the universe had done its part?
And it was not the sickness that was the hard part, but the recovery. It’s easy to get cancer (only a little bad luck is needed) but it took a special type of grit for me to put all the pieces back together afterward, and that’s what made me proud.
In a few short years I met my future husband, got married, graduated residency, took my psychiatry residency boards (and got in the top 10th percentile), got off opiates, put myself on an anti-chronic fatigue regimen that recovered my energy (which I have since taught patients), started my practice, built the practice so full that I could barely take on new patients, and started a promising online course teaching holistic treatments for anxiety.
Damn, it felt good.
When I turned 36 at the end of last year (“year one”) I pulled out my moleskin notebook and multicolored pen set and diagramed out my goals for the decade to check that my first year’s accomplishments were on track. They were.
But who wants to live like they only have 10 years left? Buddhists talk about meditating on death to appreciate life, but let me assure you it’s overrated, and a luxury afforded to those who are not actually dying. I much preferred being able to take life for granted, to make plans without pressure, to imagine a future that was guaranteed, and to live as if I had all the time in the world to do what I wanted to do.
Only recently—in the last six months perhaps—has the pressure started to fade. It happened naturally, without effort, as an inevitable conclusion of life proceeding normally.
Maybe I didn’t have to complete all my goals in 10 years… maybe I’d have a little more time. I started to take vacations. I noticed my first few grey hairs and wondered if I should keep them or dye them. I noticed the first signs of aging in my face—just a subtle loss of elasticity—and wondered if a mini facelift at 48 would do the trick.
I planned a once-in-a-lifetime trip for August with my husband. We would have flown to London to visit friends, then to Zurich to connect with my birth mother and two of her sons, my half-brothers (I’ve known all of them since I was 17), then taken a train to Frieburg, Germany to meet my Moroccan birth father and his daughter, my half-sister, for the first time. I splurged on business class tickets because my husband is a special snowflake when it comes to sleep and I wanted him to be happy.
But—and you knew there was a but, didn’t you?—as all this tension I felt started to weaken, something much more sinister was growing.
It started in July, so similarly as before. First a cold that turned into a cough that didn’t go away. Then a feeling of pressure in my chest that weighed me down as a tried to sleep, so I shifted from right to left to center trying to find the position where I could best pretend it wasn’t happening.
During the day I felt fine and made jokes that this was how my cancer started the first time, and people laughed.
I put it off for as long as I could. Last month, in early August, I sat up with my husband at night and told him the same words I had said over five years ago—”Something is wrong with my lungs.”
The next day I cancelled my morning patients and we went to the ER. I knew it was serious but was hoping it was something a little “less serious” like a pulmonary embolism or heart attack (a girl can dream, right?).
The workup (chest X-ray, CT scan) was fast and by midmorning I knew. They told me right before I was wheeled away for a Doppler to look for blood clots (which now seemed like a pointless exercise) and as I left my husband in the ER room I saw him put his head in his hands and start to cry.
I was admitted to the hospital to start chemotherapy immediately. I spent those first few days in disbelief or crying. I honestly didn’t believe I would ever relapse (although on the other hand—and this is perhaps a topic for a future post—I planned my life as if I would).
I cried because I couldn’t fathom going through the treatment again, and briefly considered not doing it. I cried because I emailed my patients to tell them what was going on, and got so many messages in response telling me to focus on myself because the world needs me and I realized that I really, truly, do not want to die.
I cried more because I couldn’t go to my trip to Germany. The day before I went to the ER I had messaged my half sister and told her how excited I was to meet her, and where we were staying in Frieburg and maybe we could meet for lunch on Wednesday? She messaged me back two days later to confirm (at which point I was already in the hospital) and when I saw her message I sat there clutching my phone, my thumbs hovered over the screen, having no idea what to say.
The cancer is the same as before— a chest mass that is a relapse of my T Cell Acute Lymphoblastic Lymphoma. The plan is a different this time and the prognosis is… less hopeful.
First I will do a few rounds of Hyper-CVAD (the same initial chemo regimen I did before) which will hopefully put me into remission, and then I will get a bone marrow transplant.
In terms of survival, I won’t put numbers here because my husband will read this and hearing any numbers gives him a panic attack. You can google “prognosis relapsed Acute Lymphoblastic T Cell Lymphoma” if you want to know.
Numbers aside, understand that I already know I’m a person and not a statistic. In the end, though, even if I end up on the good side of a 1 or 2 or 3-year survival curve do you think that’s all that I want?
No, I want 10 years. It was promised to me. I went through all that pain and torture over 3-4 years expecting 10 good years in return, and I got less than two.
And if I’m honest (and maybe this is the problem, that I wasn’t being honest the first time) I’ll want another 10 years, too. And then another, and another… enough decades that when I do die (because we all die eventually) it will be without the feeling that I have now—the sinking realization that something has gone horribly wrong for me along the way.
So now being a seasoned cancer veteran (a sad claim to fame) I know I will get sincere comments and emails from people asking me what I need or if there’s anything they can do to help.
First, please don’t feel obligated to do anything for me. I probably won’t have the energy to take you up on any offer or respond to messages (although I will appreciate reading them). Mail will be hard for me to handle. I also DON’T want advice.
Now I’m just going to be straight with you about what I DO want because if you’re able to help me with one of these below things, it will be the most meaningful way you can help me:
#1: Help me get a book deal: I’ve been working on my book the last couple years (a memoir about my cancer experience) and have a near complete proposal done, but have slacked on submitting it to agents because I’ve been so busy with my practice and I’m not that familiar with the publishing world.
If you have any helpful connections to agents or publishers (or are one), I want to hear from you. Being able to put this book out into the world is probably the most important thing to me right now. If you’re reading this in email hit “reply,” or just email me at elana(at)zenpsychiatry.com. If you put “Book Related” in the subject line it will help me see your message faster.
#2: Register to be a bone marrow donor: I actually just found out that there are several potential matches for me on the bone marrow registry database, which is a huge relief since I am adopted and mixed race and don’t have any full biological siblings. My transplant team is in the process of reaching out to these people to confirm they are available to donate, so somewhere out there is a stranger who will hopefully save my life. If this is something you’d be willing to do for another person, sign up to be a donor on the Be The Match website. It’s especially hard for minorities or mixed race people to find a match, and the difference in prognosis when you have a full match is significant.
#3: Help me get my goddamn money back from American Airlines for my trip to Germany: [Update: AA has refunded my ticket thanks to you guys!] thought that getting lymphoma a week before my trip and needing a bone marrow transplant would be a reasonable excuse for a refund (especially for a business class ticket), but apparently they disagree. They did offer me a voucher, which I appreciate, but there’s no way I’ll be able to use it within a year, and it feels overwhelming to have to coordinate other people using it and paying me back with everything else going.
You can use Twitter to tell them your thoughts at @AmericanAir (cc me @ElanaMD), or Click Here to Tweet my Pre-Written Message. As a side note, American Airlines has a collaboration with Stand Up To Cancer (who incidentally interviewed me a few months ago)… and I feel like if you’re going to do something like that you have to practice what you preach and be compassionate to people in extreme situations.
Thank you for reading and I hope to write another post soon with an update.