Posted by: Ken Wheatley | February 7, 2008

One Issue, Two Lives

I haven’t written in a few days mostly because I was enjoying the normalcy of our lives. Sheila has, for the most part, been “normal” for the past week. We went to the gym, we’ve made love, she’s cooked dinner, done laundry with me, gone grocery shopping and gone to work for full days at a time.

 But then there are days like yesterday where she’s suddenly in pain in the same places where she was in the beginning and my heart rate immediately jumps.

The lesson of course is that for the foreseeable future you can never fully relax…or forget.

Last night we went to our first lung cancer support group meeting at Scripps. There were 6 current patients with their caregivers (people like me). Half of the patients were smokers and the remainder were non-smokers like Sheila. Except that all but two of them were in their 60’s or 70’s. All except one is a stage 4 patient. One woman lost her entire left lung when it was stage 2 and it has resurfaced in her right lung two years later.

Another has had several rounds of disease, recovery, then breast cancer, then recovery, then more lung cancer and so on.

In the hall afterward the longest surviving patient present (6 years) told me that all of her friends that had lung cancer have passed away. One passed away within 3 weeks of diagnosis, another 3 months. How friggin depressing.

It’s apparent that there’s nothing that you can hold onto. Ever damn case it so radically different. How long, “exactly” do I have her for? I know there’s no answer and that just makes me want to never leave her side even more. But that’s not practical.

We may be dealing with the same issue – lung cancer – but we’re approaching it from very different ends. She literally can’t get away from it. We both struggle with how much to wallow in the subject. How many books or websites do you visit. How many survivors do you talk with? Some of the attendees have become very involved advocates for research and funding. They attend weekly meetings. They’ve formed an entirely new set of friends bonded by this insidious disease as if it were bunko or bingo.

I can’t do that. It’s too depressing. It may be a false coping mechanism, but sticking my head in the sand – not entirely – but when I can is my way of getting from one day to the next.

Part of the problem is that unlike other diseases, this is an absolute killer. It’s just a matter of how long you can outlive it. So you end up in this limbo state. You’re just waiting for the inevitable. Other stuff (heart disease, prostate cancer, etc.) you go in, you fix it and you’re pretty much done. You don’t have this death sentence hanging over your head unsure when (not if) the sentence will be carried out.

On a positive note, my staff on their own, went out and made up purple wrist bands with Sheila’s name carved in them for us to give out to family and friends. Toni, another friend, gave her a scarf and hat. And several of the ISMA members joined together to make a video when they were at the Charleston meeting sending their love and hopeful wishes to Sheila.

How incredible is that? What a group of amazing people. Their care for Sheila, and me, is so touching and heartfelt. I can’t thank them enough – along with everyone else, family, friends, co-workers alike – who have rallied around her.

This is a bye week for her, and she’s concerned about what missing a week of treatment will mean for her recovery. Perhaps that’s why she’s not fully herself this week and why the pain came back. We are going to switch to UCSD when this round is done.


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