Daily Archives: June 11, 2010

Love and sustenance

I glimpsed my first lightning bugs/fireflies of the season last night. How magical are they? It’s easy to imagine a host of lantern bearing faeries in our backyard…

My scans were on Monday and I came this close to getting into a fistfight with a nurse. Kidding, of course; remember, I’m a pacifist and don’t wish to be accompanied by hospital security on my subsequent appointments.

I was, however, absolutely steamed. Generally the orders for my scans note that I forgo the oral contrast and that notation was missing. Anticipating confusion, I alerted the receptionist. Soon my name was called and a nurse attempted to give me two barium shakes. I explained (again) that I don’t take oral contrast and would she please contact either my oncologist or the nurse in charge of clinical trials to confirm this. She looked skeptical, but said she’d check. Twenty minutes passed, the very long line grew longer, and I began to worry that this confusion would bump me further and further back down the line. I again approached the desk, a phone call was made and the receptionist said “she’s bringing two shakes out for you now”. Sigh. Several minutes later a different nurse came out, bearing (you guessed it) two milkshakes.

I (carefully this time) repeated that I do not take contrast, and had not in fact taken contrast for well over a year. The nurse said that she had spoken to the radiologist who very much wanted me to drink the contrast (just drink the damn koolaid!).

But he didn’t order the scans, I said.  He is the one who reads them, she countered, and then went on to explain how difficult it would be to obtain an accurate scan should I not drink the contrast.

As I don’t want to devote this entire blog to the ensuing argument, I will condense.  She was stolid, but I was more stubborn yet. Back and forth we went, in the waiting room, in front of all the other patients. My own certainty, my experience (I am, after all, a frequent flyer), my pleas that she speak to not the radiologist, but rather my oncologist or the clinical trial nurse, were all ignored. I finally said that perhaps I just wouldn’t be having a scan on that particular day. She left the room, I made the phone call I had requested myself, and within minutes I was called for my scans; no oral contrast (no apology either, although I had fantasized that perhaps one might be offered).

When my clinical trial team agreed that I could skip the oral contrast (I still receive intravenous contrast), it was a small but important victory for me. Of all the potentially uncomfortable procedures that are part of my treatment for cancer, drinking those barium ‘milkshakes’ every two months was, well, certainly one of the most difficult for me to swallow. I have an incredibly strong gag reflex and it was just something I had come to dread.

Needless to say, I was not able to enter that soothing zone I prefer in preparation for a scan. Nonetheless, as I lay on the table I did my best to envision clean, clear lungs. And then Jemesii (who had joined me in Boston) and I went over to Newbury Street and had a martini. Calm restored.

On to other things. A bit more about ASCO. GRACE, Global Resource for Advancing Cancer Education, has an informative posting about Crizotinib by Dr. Jack West, who was in attendance at the conference. Click here for a link to his post.

And now, what about that title? Occasionally someone will ask what sustains me; what gives me strength and keeps me moving forward. I know that for a lot of people, the answer to that question would be their faith. Pas moi, my friends.

I am an atheist. As a child I went to Sunday School regularly and even had a plastic framed print of Jesus in my room (I thought he was cute). Around the age of ten or eleven, I really began to pay attention to the words of the sermons as well as the hymns, and asked a lot of questions. By my late teens I had decided that for me there was no God.

Some people have a rather dark view of atheism, and confuse the definition, disbelief in a deity, with a lack of belief in anything. Not true. I believe in many things. First and foremost, love. It goes without saying (but I love to say it!) that I love life. I also love love.  And I believe in love. I feel that it’s one of the coolest tricks we humans can do. And talk about magic; perhaps it is the only thing in the universe (I may stand to be corrected by you physicists) that the more you give, the more you get.

So that is what sustains me. The love of life, my family and my friends. And, as I choose to believe that everyone is essentially good, I love all those people I’ve not met yet.

That has been one of the very best aspects of life and breath for me:   through their comments, many people have joined hearts and hands, and by doing so a community has been created. A sustainable community of love, caring and understanding. That’s a beautiful thing.

Peter spreads some love around