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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