Have a Story to Tell? Had a medical error?

This blog is about patient safety, medical malpractice, staying healthy, and preventing future errors. Help & empower someone else, Teach a lesson, Bear witness, Build our community - Email us or call 781-444-5525.

Frustrated with a health problem?

Need an ally in your health crisis? Call 781-444-5525, or learn more.

Saturday, September 6, 2008

I have been through this: Ongoing treatment for metastatic breast cancer

Laurie's story:

I am 40 years old, a mother to two boys, a spouse, friend, sister, daughter and writer. I am also living with metastatic breast cancer. I was first diagnosed with breast cancer in January 2006 and with liver mets in November 2006. I have responded very well to treatment (four clean scans and counting) and plan on sticking around (and living well) for a long time.

As my oncologist recently put it, "sixteen years ago, women with liver mets only had a matter of months to live," yet here I am, miraculously in remission and continuing to defy the odds. The same oncologist has declared himself to be "amazingly optimistic," going so far as to call my results "spectacular."

So many women with metastatic breast cancer are now defying the odds that the illness is starting to be viewed more as a chronic illness than the death sentence it once was. We are living longer and living well. And that is something I plan on continuing to do for a long time.

The thing about being in ongoing treatment for metastatic breast cancer is that one gains a fair amount of experience in navigating the system and acquires some pretty strong opinions as to how things should be done.

At least that's true for me.

For example, whenever I go for chemotherapy treatments (I have lost count of how many I have had but it is probably closing in on fifty), I know that I need to pay attention to a few things:
When I check in, I ask if my next date (for four weeks later) has been booked. There was lots of confusion around this when my schedule changed and I would have to go and see the woman who does the booking to straighten things out (luckily, she is the kind of hospital staffer who believes the patients know lots about their own care, so this was usually a painless conversation) but my schedule has been stable enough of late that I haven't had to do anything.

I always book my bloodwork, which is done through my Portacath, for a couple of hours before chemo. I do this as soon as I am advised of my next chemo appointment.

When I have bloodwork done, I ask them to leave me hooked up (leave the needle and tubing in) so that I don't have to be poked again in a couple of hours.

When I drop off the bloodwork, I remind the lab that I have chemo in a couple of hours.

When I am called into the chemotherapy room, I always insist on a bed (I am given Demerol, to mitigate my reactions to Herceptin and it hits me pretty hard). If no bed is available, I ask the oncology nurse to get me started and move me when a bed becomes available. If the nurse isn't familiar with my treatment, I explain that I will take Demerol, why this is the case and what it does to me. I also tell her (all but one of the oncology nurses are women) that she will need to go and get the Demerol as the pharmacy will not bring it with the chemo drugs.

Treatment starts with a steroid to help take the edge off nausea. It also makes me incredibly itchy in my nether regions (I am told that it can give men erections. How embarrassing!). I ask that it be administered very slowly.

If the nurse does not suggest it, I ask that the Demerol be administered via IV drip and not with a syringe. It hits me less hard if it is administered over a longer period of time.

When my drugs come, I check to make sure that I am being given Gravol (Dramamine in the US) and not Benadryl. The generic names are very similar and they are often confused.
Usually, things go smoothly. Sometimes they are a complete mess. Just last week, I had to call my oncologist's office because they had scheduled me for an appointment with him for the day after chemo. He always sees me before chemo and I can't get treated if I haven't seen him.
When I called to change the appointment, the admin person I talked to was a bit unsure as to how to proceed. She was having a hard time believing that the info in her computer could be wrong. "You need to trust me," I said. "I am on the long term plan and I have been through this many, many times."

She made the change.

Most of the hospital staff are very nice and incredibly competent. The ones I respect the most ask me how we should go about doing things (my protocol is unusual and I know the routine better than anyone). The ones I like the best are the ones who remember me and start setting things up the way I need them to be without my having to say anything. And it really helps if they ask about my kids.

I don't even mind if they tease me about my snoring. The Demerol really does knock me out.

Thanks to Laurie Kingston for the source story in the Breast Cancer Network site.

No comments: