Friday, May 1, 2015

Time, Cancer, and My New Oncologist

So I had the appointment scheduled with my new oncologist for next week.

As you may remember, after seven years with Dr. R, he announced in the fall that he was moving out of state. that was hard -- I really liked Dr. R, and he had been with me since the beginning of this journey. It was tough to leave him, but we said good bye in December. Dr. R's office was supposed to set me up with another oncologist closer to my home, though in the same practice. (They used to be a private practice affiliated with local hospitals, though now they are officially branches of one of those big hospitals.) I was supposed to get a call from the new oncologist within a month. I finally had Dr. R's office call them a few weeks ago, and they remembered that they needed to set up an appointment for me.

That was not a good sign.

Yesterday, I got a phone call from the office, and they left a message. Before I could get to the message, I got a letter in the mail from them saying they needed to cancel my appointment for next week. and that I should call to reschedule. The phone message said the same thing.

No big deal. I called and rescheduled for a coup,d of weeks from now.

But here's what bothered me:

They sent me a letter?

It's not so much that a letter is kind of an old-fashioned way to communicate. Very 16th century, when that technology from two centuries ago, the telephone, is so readily available. We'll leave out email, which seems like the most efficient form of getting in touch with someone. That seems like a lot.

I don't object to old-fashioned letters. But what bothered me was this: they sent the letter on April 23. I received it April 30. That's a whole week, when a phone call could have taken care of it in 5 minutes. And I know, they did eventually call, after not hearing from me for a week, since I didn't get it for a week. And I also know they are probably very busy in the office, and one mail-merged letter might have taken less time than however many phone calls they needed to make (although, they would eventually need to have those phone conversations once people called back).

What bothers me is that they don't really seem to think at all about time. And that's exactly what an oncologist's office should be thinking about.

As cancer patients, we measure everything in time. We can look at other ways to measure things, like White Blood Cell counts in a blood sample, or milligrams of Rituxan per dose, or Standardized Uptake Values in a PET scan, or any other ways of measuring our lives in numbers.

But the one that it always comes back to, the one that really matters, is time. If my White Blood Cell count has changed, how much time do I have to make a decision about what to do next? If that Rituxan dose causes a reaction, how much more time will I have to sit here in the chair and see if the Benedryl and steroid stop the shaking and the rash? If my SUV has changed, does it mean that I have transformed, and how much time do I have left? (Yes, that's where we go immediately, even if we shouldn't. We are cancer patients.)

After I was diagnosed, one of the real changes that I noticed was my lack of patience. I absolutely hated to have my time wasted. At meetings at work, I'd get caught up in petty discussions about details that really didn't matter, or that could be worked out later. I'd want to kill someone. When my kids fought over stupid things, it would drive me crazy. One time, I got pulled over by a police officer for talking on my cell phone while driving, which is illegal in my state. Only I wasn't on my cell phone. I was at a stop light and leaning my head on my fist, which looked like I was holding something to my ear. I actually yelled at the police officer, something I would never normally do. But I was on my way home to do something important, and he was wasting my time. And I hated to have my time wasted.

I'm a little better about that now. Seven years has given me some perspective, and I am more patient now than I was when I was first diagnosed -- much closer to the calm, mellow, patient Bob that I was before cancer.

But something about getting that letter just bugged me. It just felt like a big misunderstanding of what time means to a cancer patient.

Now, none of us, cancer patients or not, knows how much time we have. But cancer patients just feel it more, because we are reminded of it a lot more. Everything, for us, comes down to time.

So that's two strikes against this new oncologist's office, and I haven't even been there for an appointment yet. Both strikes have to do with time, and that concerns me. I always felt valued with Dr. R, and that included valuing my time. So far, I'm not feeling that way with the new folks.

I think what is scaring me a little is that, when time really does matter some day, they aren't going to value it the way I want them to -- need them to.


That said, I'm still going to give them the benefit of the doubt, and I'm still staying positive.  another step on the journey, and every new path has its problems. I will keep you updated.

You stay positive, too.


Anonymous said...

I love this post. My husband was diagnosed with stage 1(but I'm not really convinced) follicular lymphoma last year and currently has another couple of nodes just showing up now. Also I am a hospice nurse and I think about time and what it means to value someone and their time. Thank you very much.

Lymphomaniac said...

Thanks very much. Stage 1 is tough -- from what I've read, only about 15% of them are detected, since it's so slow-growing. I hope things stay under control for him.
And thanks for the work you do as a hospice nurse. I've see firsthand how important that work is, and what a difference it makes to everyone involved.