Toolkit For Working With Your Medical Team

Coping with cancer is an intense process that entails many layers. When we speak of blood cancer, there is the unveiling of the new woes that come with what we know as that “invisible condition.” Blood cancer has no true form, whereby you can look like your old self but feel horrible. There’s a lot that comes with this, though: general conversations of possible symptoms, constant doctors’ appointments, and, in some cases, severe fatigue are typical. Let’s delve into other areas that are worth mentioning, as well, and how to create a toolkit for them.

Doc, you missed that one…

Unfortunately, your medical team may overlook some areas of instruction and care, and you may find yourself in a trial-and-error situation. We understand that there is no script for how your journey may pan out. There are some areas that are not mentioned by your doctor, not because they are not worth mentioning, but because not everyone may experience that particular issue.

Do any of these seem familiar?

• Failed to mention you may blow your veins from the constant blood draws and, in some cases, the infusions.
• You may or may not vomit through your first batch of treatment. Your chemotherapy cocktail may need to be adjusted based on how much you can tolerate.
• You may need to share a room with another patient getting treatment at the same time as you.
• You may have pushback from your medical team for services such as PET or MRI scans with contrast, using a radioactive tracer, or while getting a bone marrow biopsy (These are real concerns for some child bearing nurses who don’t wish to be exposed).

There can be a variety of nuances that get brought up when they need to be brought up, or not at all.

Different people, different places

As time goes on, I think many patients learn that there’s not one go-to person when you are being treated for blood cancer. You learn, quickly or eventually, that there is a "who is next in the line of command" attitude when coping with different highs and lows during treatment. You’ll learn that your primary care physician needs to be part of your in-the-know team as well. If you have a cold, though, it's good to inform your oncologist specialist.

If you were not engaged with having many doctors prior to diagnosis, you’ll learn that it may be essential that all your medical team members fully understand the severity of treating you as their patient. You may not have the luxury of having all parties in one facility, so it may be necessary to remind people of what you have going on, and what doctors A, B, and C think.

You may find yourself walking around with copies of records or important phone numbers, so that different medical care partners have an idea of what is happening, as well as a means to follow up with colleagues.

Toolkit basics

Start thinking of your blood cancer toolkit like a carpenter thinks of his work tool case. He/ She will have the necessary and expected items such as drills and chisels.

A patient may organize their own tools by not only describing how they feel, but also discussing other areas of care that may or may not be a problem.

A patient's toolkit will include being comfortable discussing uncomfortable conversations, and learning how to maneuver and partner with their doctor to have the best experience.

What would be two items you would want to add to your blood cancer toolkit?

The time to fight is now, with integrity, grace, hope, and a smile…when you feel like it