Posted by: Ken Wheatley | July 15, 2008

The News…The Path Forward

Our appointment was for 2pm and we waited…and waited…and waited.

Neither of us had eaten much today. I had a yogurt at home and a cup of English Toffee “coffee” at work. I’m not sure what Sheila had to eat. I left before she was dressed. I couldn’t sleep even though we didn’t go to bed until 1am. I was up by 6. So as the day dragged on, the knot in my stomach grew and by 1 there was no room for food.

The waiting room was filled. Again. I’m not sure why, but for as many times as we’ve been there it always catches me off guard. I’m used to seeing busy waiting rooms. But it’s the realization that most of the people are there to get treated for one form of cancer or another. And each time that realization doesn’t hit until suddenly the collection of addled, bald, sad, worried, preoccupied, and/or wheelchair-bound people hits a subconscious tipping point. This is not your typical waiting room. It’s a worry room.

It was after 3 when they finally called Sheila’s name. By then the knot in my stomach felt like a heavily consumed meal.

After the usual weigh-in and medical history, we waited, again. Finally Dr. B and the research associate showed up. Peter is a young Asian guy. Always smiling. A bit uneasily, but he makes the effort.

Dr. B launched into an in-depth, rather graphic monologue about the side effects of the Tarceva medication. Somehow the words “rash,” “acne” and other terms take on a gravity that’s much heavier when spoken with a Russian accent.

Then she talked a little bit about the trial drug – if Sheila should actually get that one instead of the placebo.

We both sat perfectly still, intently listening to every word, my eyes locked on Dr. B’s lips for extra measure. My ears have grown accustomed to her accent, but I still watch her lips just to be sure my ears and brain are in sync.

It was at that point that she clasped her hands together, smiled, and looked at both of us as if she was done and said, “Any questions?” I smiled and looked at Sheila, who looked at me, then we both looked at Dr. B. “A…how about the results of all the tests that Sheila took? You haven’t said anything about that.”

Dr. B turned to the computer and as she logged in she started to say things, but I could tell that she was choosing her words carefully.

What she was avoiding telling us was that the tumors on Sheila’s spine (L3) and rib are back and bigger than they were months ago.

Dr. B and I both looked at Sheila and pre-emptively, Dr. B told her not to be upset with the news because it wasn’t going to change the course of treatment. She continued that it didn’t matter if Sheila has two, four, or five tumors. The chemo didn’t work as hoped and we have to move on to the next phase. The good news, she said, is that the tumor just above Sheila’s stomach hasn’t reappeared at this point.

Much to my surprise, Sheila was fine. No tears. No real reaction. Just calm.

Sheila asked a few questions and then we….moved on.

She got 3 ekg’s for the baseline report. Then we went and met with the chief pharmacist to get the trial drug (or placebo), then to another pharmacy to get the Tarceva.

It’s $3,800 a month without insurance. About $127 per pill. Talk about bringing home the debate on health care costs. Fortunately the insurance should cover most of it.

We didn’t talk about anything as we walked to the parking lot. We hugged for some time, kissed and said goodbye. She was heading downtown to have dinner with friends.

So she’s becoming quite the professional patient. She’ll be giving herself a shot every night to prevent clotting (although Tarceva can cause hemorrhaging), two pills everyday, blood tests every two weeks, a CAT scan every 4 weeks, and an infusion of Zumeta every 4 weeks to help strengthen her bones against the damage the tumors could do to her rib and spine.

Through it all she’s been amazing. I’m so proud of her strength and fortitude, even in the weak moments. It’s for those reasons, and many others, that I hold out hope that she will prevail.

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