Tuesday, February 10, 2015

Cancer Diaries-- Diagnosis


Yeah, its a big shock when your doctor first tells you that your diagnosis is cancer. BIG SHOCK. But I suspect that for most people-- certainly for myself-- it only happens once-- the shock, not the diagnosis. The second time you're diagnosed with cancer, the shock-- and the fear-- aren't as palpable, earthshaking and profound. I was diagnosed with prostate cancer around a decade ago, eventually chose to work with a doctor who treated it holistically rather than with traditional western medicine, and I've been in pretty good health since.

Actually, I haven't been in pretty good health since. I had a bunch of weird and disparate symptoms, unrelated to prostate cancer, that half a dozen "top" doctors were unable to diagnose for several years. I don't know if it's an unwillingness or an inability to listen but I found over the last few years that a series of male doctors pretty much ignored the specifics of my complaints. They were action-oriented and just wanted to treat whatever symptoms were apparent without even making a pretense of understanding why the alarm bells were ringing. This even included doctors at one of the country's highest-rated research hospitals. One told me he didn't have time listen to my whole story and that I should shut up and let him treat me. He treated me for the wrong thing, of course, and never got around to discovering the Mantle Cell Lymphoma that was growing inside me.

Now, Mantle Cell Lymphoma is a pretty rare disease. It wasn't "discovered" 'til the '80s and it wasn't named until the '90s and there are only around 5,000 diagnoses of it annually. But there has been tremendous progress in treating it and I suspect if doctors paid more attention to their patients' descriptions they would find a lot more cases, and a lot more quickly, than they do.

My family doctor, who had never heard of Mantle Cell Lymphoma when he called to tell me the test results showing I had it, suggested I go see two top specialists, one at Cedars-Sinai and one at City of Hope. And I did. And both seemed like excellent doctors who I felt I could trust with my care. But what do I know? The doctor at Cedars is an older man who was very reassuring that the disease was very treatable and that the course of treatment would be pretty easy and relatively non-invasive. The doctor at City of Hope is a woman and younger, although she's an expert in this particular lymphoma. She wasn't as reassuring that it would all be easy-peasy and her plan of treatment was a lot more difficult and painful than the one the doctor at Cedars was recommending. I didn't know how difficult and painful at the time, but I could sense that if I chose her, it wasn't going to be a walk in the park. I consulted friends in the medical field. Almost everyone thought I should get my treatment at City of Hope. And that's what I'm doing. As I explained yesterday, I started treatment late in October.

Here are some of the considerations that went into the decision to pick City of Hope. It wasn't just that the doctor there is a woman and the one at Cedars is a man. And if I was a bird and flew from my house to the two hospitals, Cedars would be much closer. But I'm not a bird, and I have to drive for treatment several times a week. Cedars is in Beverly Hills, practically right next door. Traffic is nightmarish, though, and it takes at least 45 minutes to get there from my house. City of Hope is in Duarte. People in L.A. might as well hear you telling them you're going to Omaha for treatment. It "seems" far off in the desert. Actually, there is NO traffic and it takes between 20 and 22 minutes to drive from my driveway to a convenient, free parking spot at City of Hope. Parking at Cedars is an entirely separate nightmare that must be contended with-- at a time when you want as little extraneous stuff to contend with as possible.

Starting with the lady at the parking kiosk, everyone at City of Hope seemed geared up towards one thing and one thing only-- making life easier and better for the patient. Like many of us, I've been hospital-adverse my whole life and my experiences at hospitals haven't been positive. They seem cold, bureaucratic, unfriendly and anything but patient-centric. City of Hope immediately intrigued me. It was very different from any other hospital I had ever visited.

City of Hope treats cancer, not infectious diseases. I've always feared going to the hospital for one thing and "catching" something and dying from that. Last week when I was in an ER cubicle in Glendale Memorial for broken ribs and a punctured lung, the guy in the next space had an infectious disease. I said something to the staffer who was treating me and he told me not to worry because there was a curtain between us (more or less). That didn't reassure me.

I soon started tuning into something else that I had never really been aware of: hospital protocols. Both Cedars and City of Hope are famous for extremely strict, solid protocols. Doctors and nurses suit up when they treat you. The standards for hygiene are daunting. Say you're about to get a drug administered to you by a nurse. Before that happens, another nurse comes to the room and checks that this is the order your doctor sent to the pharmacy and that this is the drug that the pharmacy sent to you, and then that you are actually you and not some hapless imposter. After nurse #2 ascertains all this, nurse #1 comes back in the room and administers the drug. I feel safer that no one's going to leave a saw in me.

The protocols at Glendale Memorial were considerably more lax-- at least in practice. The hospital didn't seem nearly as obsessed about hygiene, which wasn't comforting. And when the doctor put me into reverse isolation-- fear of pneumonia because of very low white blood cell levels-- some of the staffers outright refused to put on masks. One, who was wheeling me around on a gurney, was angry when I asked him to put on a mask and he kept coughing at me. Another, a tech from radiology, got angry at me and insisted there was nothing wrong with her. This isn't the kind of basic thing a patient should be forced to deal with.

The next thing I want to talk about is the nurses. I'll try to tackle that next time.

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At 7:37 PM, Anonymous Anonymous said...

Best of good luck to you for your treatment and cure. Sure look forward to many, many more years of DWT insight, wisdom, and passion.

At 8:53 PM, Anonymous Anonymous said...

My best hopes and wishes for your successful treatment and recovery. Here's to many more years of fierce posting on DWT and happy living in this beautiful world for you.

At 8:58 PM, Blogger Daro said...

I had the all-too-similar experience with disinterested doctors. Still makes me angry to think about it.

Doctors told me I had late onset Type 1 Diabetes. No chance to cure. After watching this TEDx video I applied her principles and defeated my diabetes nearly completely. You are in control of your phenotype via food. In my case it was baby spinach and banana smoothies. It was that simple. You can make it.


At 11:35 PM, Blogger Beth Caskie said...

damn it. I am so sorry this is happening. It's good to hear of the experience at City of Hope, though. Never stop asking for best practices.

At 12:46 AM, Anonymous ap215 said...

I'm very sorry get well real soon & good luck.

At 6:24 AM, Anonymous wjbill said...

Hope you have a smooth treatment and recovery. Please keep up the good work.

At 8:47 AM, Anonymous Anonymous said...

A dear friend of mine was hospitalized often with his cancer and as you say, protocols take top consideration for you as a patient. I visited him often and it was his only time to feel safe enough to sleep -- he knew that if i were there he had someone to turn over the job of supervising the protocol 'watch' to ... :) and so he could comfortably and peacefully get some rest. It was a 'job' i was honored to do for him. and one he never asked me to do, and one we never discussed me as doing, as it was unspoken between the two of us. But we both knew just the same, and he slept.

At 10:41 AM, Anonymous Bil said...

Howie, Many good thoughts and wishes heading your way.


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