[2021-02-19] Managing your healthcare

I had more blood work done today to ensure that my new medication is not overtaxing my immune system. I'm very pleased with my results, which show steady improvements in key markers relative to my results from a week ago.
  • My neutrophils continue to rise (2.2, up from 1.6) and are now back in the normal range (2.0 to 7.5) for the first time since I started chemotherapy. You may recall that my level of neutrophils (a type of white blood cell) was always the deciding factor in whether chemotherapy would proceed as scheduled. My neutrophil level fell as low as 0.7, which occurred a few days before chemo #4. Thankfully, on scheduled treatment days, it always hit at least 1.0. I'm thrilled to see this number continue to rise even after starting my new medication.
  • My white blood cells have also climbed (3.4, up from 3.0) and are now just shy of the normal range (3.5 to 10.5). Like my neutrophils, today's white blood cell count is the highest it's been since starting chemo.
  • Two results that had dipped last week have returned to where they need to be. My platelets have bounced back (157, up from 119) and are once again within the normal range (130 to 380). Similarly, my hematocrit level has rebounded (0.382, up from 0.358) and is also within the normal range (0.380 to 0.500).
  • Only my lymphocytes (a type of white blood cell) have dropped (0.7, down from 1.0), bringing them just below the normal range (0.8 to 3.3). Though I'm not a healthcare professional, I'm not concerned by this result, as my lymphocytes have consistently been on the low end of the normal range.
  • One other result of note: my CA125, which is the key cancer marker, remains at 8, matching last week's level. A normal level of CA125 is anything below 35. This brings me joy.
I love having access to lab results. Gone are the days when we would get tested and the best we could hope for was "no news is good news." And when I have my blood work done in The Ottawa Hospital, the results arrive so quickly. By the time I got home from the hospital lab, my results were already waiting for me. Also, MyChart, the app used by The Ottawa Hospital, presents not only today's results (under the Details tab) but also results over time (under the Past Results tab), so it's easy to see trends.

There was some confusion about whether I would have blood work done this week. I had been told by different members of my healthcare team that my blood would be checked weekly for the first month that I was on my new medication and monthly thereafter, but also that it would be verified only monthly. So I asked again and received confirmation that weekly was the right answer.

One of the things I've done since the beginning of my cancer journey is to take detailed notes of every medical-related conversation I have. It is so easy to forget details of such discussions at the best of times, but when you add in stress and garden-variety forgetfulness, it can be difficult to remember things like the frequency of tests. I have a tablet with me during visits with doctors. And for longer visits or calls, I've had my niece, a nurse, listen in. Every medical professional has been happy to have her on the line and even to answer her questions. This has been a good option in light of COVID-related policies that do not allow most patients to have someone accompany them to appointments.

I also take notes of how I'm feeling and any side effects. And I use the MyTherapy app every day to track things like my temperature, symptoms and medication.

When it comes to your health, you are best placed to lead your care. In a busy healthcare system, communication isn't always perfect. For example, just before chemo #3, a nurse at the Cancer Clinic told me that my neutrophil level of 1.1 wasn't high enough and that if I didn't reach 1.2 by the next morning, my treatment would be postponed by a week. I did hit 1.2 the next morning, and all was well. However, at my next appointment with one of the oncologists, I asked him about neutrophils, and he told me that chemo could proceed with a neutrophil level as low as 1.0. So when I hit 1.0 two days before chemo #5, I informed the nurse who called me that I would not be going for another blood test on the morning of my treatment because 1.0 was good enough.

On other occasions, I have pushed for earlier appointments, citing an issue of concern in a diagnostic test. And, as I shared recently, I double-checked the dose of my prescription when I needed clarity on the instructions on the bottle.

What my experience over the past six months has taught me is that I am in charge of my health. Here are some tips for managing your healthcare and helping to ensure the best outcome.
  • Keep medical records. This could be a paper file that you take with you to appointments and have handy for calls from healthcare professionals. It could be an electronic file. And it could be one or more apps that facilitate access to your information. If your hospital, clinic or healthcare team provides an option for access to electronic records, such as MyChart, sign up. Being able to check things like the results of blood tests and to see trends can alleviate stress and provide answers when you need them. And if you are missing a record, especially one from a hospital, ask for access to it, as I did recently with my pathology report, which did not appear to have been included in MyChart.
  • Track your medications. Use an app, such as MyTherapy, or a reminder or your phone or smart watch, to ensure that you take medications as scheduled. MyTherapy allows you to customize your notifications so that the app will remind you every five minutes of the need to take high-priority medications until you mark it as completed. You can also track medications taken as needed, such as over-the-counter pain medication. Tracking medications also facilitates answering oft-repeated questions, such as when did you start the drug.
  • Note side effects. You can use an app, an electronic document or a physical notebook to record side effects of treatments and medications. It's easy to forget how you felt or on which day you first noticed a given side effect. One of the markers I followed closely during chemo was my temperature because having a temperature during chemo can be a sign of a serious problem; taking my temperature every night and recording it in the MyTherapy app gave me peace of mind. I continue to take and record my temperature every night.
  • Invite a family member to listen in on appointments with healthcare providers. It can be very helpful to have someone with whom you can compare notes on what professionals said during appointments and on key takeaways.
  • Write down your questions. Healthcare professionals are busy and, while they're happy to answer questions, they'll conclude an in-person appointment or a call as soon as your questions run out. It's easy to leave an appointment, only to later remember one or two things that you had meant to ask. So compile your questions before an appointment and don't be shy to say, "Let me check my list to make sure that I've asked all the questions I wanted to." And if you have doubts, ask the same question more than once; receiving confirmation from a few members of your healthcare team can be reassuring.
  • Consult reliable sources of information. Read everything healthcare professionals recommend, such as booklets provided to you in the hospital about your condition and information sheets about the side effects of medications and treatments, and watch any videos they recommend. Be wary of information on the Internet; choose neutral sources such as government websites and associations (for example, Ovarian Cancer Canada and the Canadian Cancer Society). If you're not sure about something, note this in your list of questions to raise with your healthcare provider at your next appointment.
  • Go for your tests. Make sure that you go for the tests that your physician prescribes in the timeframe they request.
I share these tips, not—of course—as a healthcare professional, but simply as a patient. I've learned a lot on my journey with cancer, lessons that are no doubt applicable to many people.