Call and Report

Today's topic is the importance of staying in touch, reporting in. Obviously your doctor or nurse does not need hourly updates unless you have been asked to call that often. They do need to know if there is a problem. Whenever I speak with someone who is soon scheduled to begin chemotherapy, I remind her that, the first time, all we can do is make our best educated guess about symptom control. We know what helps most people, but everyone is different, and her reactions may be less common. The reminder is: Don't suffer in silence and think that chemo is just like this. It does not have to be. If you are miserable, call us!

At BIDMC and all other cancer treatment places, there is someone available 24/7. If you are miserable at 2 AM, it is ok to call. That is their job, and that conversation may have you feeling better by 3 AM.

This also comes up, per the essay by Heather Millar that I will share, later in treatment if you have a new side effect. Or if you have a side effect that seems worse than earlier cycles. Again, call.

Another variation of this is the Two Week Rule. This mostly applies to people who have completed active treatment and are going on with life and sometimes worrying about cancer. We all know that, especially in the first months, every single ache or pain or cough panics us. Oh no! The cancer must be back--forgetting that we helped to move a piano the day before. Again, obviously, if you are in the midst of a medical emergency (a possible heart attack or stroke or something else equally frightening), call 911 immediately. Most things, however, fall in the worry, not the panic, bucket. If your shoulder is sore or your back aches or you have a lingering cough, give it two weeks. You may even want to make a note somewhere of when you first noticed it as it is easy to forget the timing.

If two weeks passes and you still have X, the next question is whom to call. Some people prefer to start with their PCP who seems less scary. Others prefer to go directly to the oncologist and acknowledge what they are scared about. My advice here is to call the person with whom you have the most comfortable relationship and whom you know will call back quickly. Most of the time, X turns out not to be cancer or anything else awful, and this experience then serves you well next time when Y occurs.

Here is the start of the promised essay and then a link to read more:

One Mistake Made My Chemo Side Effects Even Worse
By Heather Millar

I don’t know about you, but what scared me most about starting chemo was the side effects. The movies always make them look so awful — I had no idea what to expect, but I doubted it would be good.

Of course, everyone’s side effects are different, and no one knows exactly what your side effects will be until you’re one to two cycles into your chemo plan (and they may change as your chemo continues).

The main thing I learned is that if you’re suffering during chemo, you need to tell your doctors. Now is not the time to be stoic. Now is the time to complain when you’re hurting.

For the first several cycles of my treatment, I had it pretty easy: I had predictable nausea and fatigue. My brain went on vacation and left my body at home to deal with chemo. But I didn’t get a roaring infection like many of my acquaintances did. I didn’t have nerve issues that made me feel numb, or like I was walking on needles, or like my hands were on fire. I didn’t throw up for days. I wasn’t hospitalized because my blood counts got dangerously low. I know folks who went through all those things.

So I started to get pretty confident. “Maybe chemo won’t be so bad,” I thought. “Maybe I’ll be one of those lucky ones who get off easy in chemo roulette.”

Around cycle four or five, I started to notice that I had sore spots in my mouth. I’d had herpes simplex, like 50 million other Americans, for decades. So I thought it was just the virus. I explained it away. I made excuses for 1 week, then 2.

Read more of Heather's story.