Thoughts after being diagnosed with cancer

When I was first diagnosed with cancer several weeks ago, I didn’t have much time to think. I was just trying to survive after getting punch to the gut after punch to the gut of bad news.

First I went to the ER thinking I had pneumonia, and was told that no, I had cancer. Then I was told instead of it being a more common, more relatively easy-to-treat type of cancer like Hodgkins or B-cell lymphoma, it was a more rare type of lymphoma (T-cell), with a worse prognosis, worse survival rates, and a much harder chemotherapy regimen that would last two and a half years instead of the six months I was expecting.

Then I was told the chemotherapy would make me infertile and menopausal, at 31.

Then I was told I might need a bone marrow transplant. The doctors asked me, “Do you have any full siblings?” I told them no, I didn’t, because I’m adopted.

“Oh hmm …” they trailed off. “We’ll worry about that later.”

But then, a few days later, I got my first piece of good news. The bone marrow biopsy was negative, dramatically reducing the likelihood I will need a transplant. I tolerated the chemotherapy well in the hospital, did not become neutropenic, and was discharged after only a week in the hospital as opposed to a month.

Since getting home a week and a half ago, though — with the immediate adrenaline of the initial diagnosis wearing off — I’ve had plenty of time to think.

I’ve wondered, is this real? Is this really happening? Is this just a dream? When will I wake up?

I’ve wondered, what if I didn’t decide to wander into the ER that one night, and instead kept walking back to my car? What if, a few days later, I had left as planned for a two week road trip with my boyfriend?

I’ve been looking into lifestyle and alternative methods I could use to help beat my cancer, and have done some research on nutrition. I’ve read stories of people who say they cured their cancer with nutrition alone. But then I wondered, does this mean I caused my cancer with bad nutrition? Was it those occasional pepperoni pizzas? The diet cokes? The Frenchies frozen yogurt obsession?

I’ve wondered, when did that first cancer cell run amok? If it was really six weeks before my diagnosis, which the doctors hypothesize, it would have been when I was in Florida at the annual conference for the American Board of Integrative Medicine (ABIHM). I can not think of a time this past year when I was more happy, more excited about my work, more positive about my life, eating healthier food, or building amazing relationships so quickly.

So I wondered, did my body just not have a chance against this thing? If it really grew from a single cell to an 18 x 11 x 7 cm mass in six weeks, was there really anything I could have done to stop it? Can I forgive my body for failing me? Can I forgive myself?

When I was told the diagnosis was T-cell lymphoma, I wondered, “What if I die?”

While I tolerated the chemo well in the hospital, after getting home I was crippled with massive headaches from the lumbar puncture for the intrathecal chemo, then fatigue from being anemic, then flu-like symptoms when I did finally become neutropenic (a normal white blood cell count is between 5-10 — mine was 0.87).

I’ve wondered what you would all think of me if you knew, despite the positivity in my recent writing, that at my worst moments I’ve cried because I’ve been in such physical pain, that I’ve cried because I’ve felt sorry for myself.

When a few people (a very, very, small minority, mind you) came to me with sarcastic and hurtful comments in response to my blog post (telling me that I’m entitled, overprivileged, that I didn’t deserve the excellent care I received etc.) I wondered, why are they misunderstanding what I’m trying to say so much? Do they know each of their words feels like s sucker punch to the gut? That it almost hurts worse than the cancer?

When so, so many more people came forward with loving and supportive messages — so many, that it totally blew my mind — I wondered, do I really deserve all this? All I did was get cancer. What will it feel like to accept all of this love, knowing it is so vast that there is no way I could possibly reciprocate it?

When I became neutropenic even though I was determined not to, I wondered, how much control do I really have over any of this?

I’ve wondered, could I write my own medical marijuana prescription?

My hair started rapidly falling out a few days ago, so my boyfriend shaved it off for me. Even the stubble was patchy, so we went straight for the razor shave. I’ve wondered, should I just rock my bald head? Would I feel proud to do that? Uncomfortable? My freshly-shaved bald head is pretty pasty, by the way. Baldness is also surprisingly cold.

I’ve wondered, when I finally get to start surfing again, will I suck? (The PICC line in my arm to facilitate chemotherapy and blood draws makes any water immersion, especially surfing, a big no-no — think instantaneous bacterial blood infection).

I’ve wondered, should I really have shared my diagnosis on the blog? Can I really fight this fight publicly? That “Love Is …” article poured out of me with almost as much necessity as an exhale. So, I wonder, did I really have a choice?

I’ve wondered, will this experience change me? How? When? Am I changed already?

Elana Miller is a psychiatrist who blogs at Zen Psychiatry.

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  • Jonathan Mast

    Elana 15 years ago tomorrow as a 34 year old with no family history I received the diagnosis of colorectal cancer. I remember walking out of the Dr.’s office with my wife and it seemed like a scene from a movie. Everyone else was moving in slow motion and I wanted to shout don’t you know I have cancer!
    My course of treatment changed several times. I was fortunate and caught mine early and now here I am 15 years later. There is a huge community of survivors and fighters out here. Don’t be afraid to share and get support. Thanks for sharing and putting yourself out there. You have already helped others I am sure and I hope you will find great support as well.
    It does change you forever. As the years have passed I feel less changed sometimes, but then when I meet a person newly diagonsed or now that I am losing friends to the big C I wonder how my journey was changed. I am grateful to God for keeping me here and seeing my daughter grow up. Stay strong.

  • http://www.practicebalance.com/ PracticeBalance

    As a physician, I too experienced a diagnosis and treatment of cancer; mine was a pituitary tumor that manifested itself as strange, nonspecific symptoms for years before the final MRI. I remember being called to the radiologist’s reading room, which I thought was just them trying to oblige me as a doctor. I was astonished to see the diagnosis! I identify with all that you have questioned and what you are going through, especially about your decisions to share your experiences publicly on your blog. I have done so myself, because mainly I don’t feel there is anything to hide, and I hope that my experiences will at some point help a reader. But it is scary to share private things about yourself, and I also have had the occasional snarky comment. Please know that there are lots of us listening, reading, caring about what you’re going through! Good luck!

  • Naz

    Dear Elana,
    There’s something within me that tells me you will be
    fine. More than fine infact. And because of this experience you will be
    an even better physician. I’m a medical student and last year I lost my
    best friend and med school classmate to cancer. She didn’t die because
    of her cancer, she died because of pneumonia. She had undergone her
    chemotherapy sessions and had her brother as a perfect bone marrow
    match. Because of her beliefs she decided to postpone her BMT to try out
    some alternative treatments (US healers, Mexican hyperthermia clinics,
    John of God in Brazil). During that process she contracted pneumonia and
    never recovered. I’m mentioning this here because I think she would
    want you and other patients to know this. Get all the allopathic
    treatments you need, yes they are toxic, yes they make you feel awful in
    every sense but you will live and you can then proceed to try any
    cleansing, adjunct alternative regimen that’s out there. I have no
    intention to undermine alternative treatments in general but a cancer
    patient doesn’t have the time and physical resources for a trial and
    error recipe. I care about your healing and can’t wait to see you
    practice medicine soon! Much love your way :)

  • sideshow_val

    I was diagnosed with Stage IIa breast cancer in March 2012 (a total surprise – I found out during my first mammogram after turning 40). My dad was dying of pancreatic cancer at the exact same time. I was shocked, overwhelmed and so very sad at what felt like a limitation suddenly placed on me – that there was now a ceiling on my future, whereas everyone else’s seemed limitless. I, too, wondered at what point did my cancer start? And my dad’s? What could we have done differently?

    I decided to do something quite uncharacteristic of me: I told everyone. I told my colleagues (or rather, told the ones I was close to, and let them know they can tell others), called my family and friends, and posted it to Facebook and Twitter. And I’m so very glad I did. It meant that I don’t have to expend any energy keeping something so important to me a secret; it meant friends, family and colleagues had the chance to tell me how much I mean to them and how much they’re happy to support me. Many of them had friends and family who had gone through something similar 1 or 10 or 20 years ago, and they gave me their contact information so I could get advice on treatment and care (which was enormously beneficial when I had to decide between chemo or a series of alternative treatments my oncologist recommended). Instead of feeling depressed, I started feeling deeply, profoundly grateful for the people in my life, for my job, for everything.

    Then I decided it was time to start doing the things I’d always meant to do but had never gotten around to. Diet and exercise were essential, but so was meditation, which led me to understand certain other things I needed to do (like returning to writing, something I’d given up long ago). As someone commented above, we’re all going to die – cancer gives you the gift of a warning flag, reminding you of your mortality so that you still have time to make right anything that’s veered off course.

    When I was diagnosed, I would’ve never, not ever, thought there would be a silver lining. But in the end, cancer wiped out my encroaching cynicism and forced me to reevaluate my life and start taking action, now. I don’t want cancer to come back, but as many survivors have told me, I’m enormously grateful for what it’s given me.

    Everyone’s different, of course, but my advice to you: if cancer is going to take so much away from you, find out what you can take from it. Figure out how you can use it to make your life better going forward. Life – every bit of it – tastes so much better post-cancer than it did pre-cancer. And I intend to savor as much of it as I can, while I can, because I know now – I mean, really, truly know – that I can get that diagnosis, or a worse one, again tomorrow, or next year, or 10 years from now.

  • sideshow_val

    (Re my previous comment: this avatar is actually from my boyfriend’s account, not mine. Not sure why my avatar isn’t showing up.)

  • rheumdoc

    I also am a physician who was diagnosed with a cancer (thyroid) at age 30. I think the psychological ramifications of being a physician and having to become a “chronic” patient overnight with a cancer diagnosis as a young adult is VERY difficult; and like a couple others here, I can totally relate to all your thoughts in your blog post. I have had others tell me I will be a better doctor because of this experience, and sometimes I really think that’s true — while other times, I would like to think I had good empathy and was a perfectly fine doctor before cancer too. Given you have decided (whether willingly or not! ;) ) to share publicly your experiences as a cancer patient who is also a physician, I would love if you could perhaps lend a voice to other young adult cancer support organizations like Planet Cancer and Stupid Cancer — I think it’s the young adult nature of what we feel and think that are often shared themes among other young adult cancer survivors. Just my 2 cents. Sending love and hope and prayers your way. Oh, and BTW, I too had many a very low moment crying silently to myself in my office (before surgery) and in my hospital bed (post-op). Crying is very cathartic. HUGS.