Do research before each appointment and learn what you can about cancer and lymphoma.  Just don’t overwhelm yourself.  As you go on this journey, you will become more familiar with lymphoma, the lymphatic system, blood cells, etc.  Learning this information over time helps you to retain this knowledge.  It also helps for you to ask questions that are relevant to your care/treatment plan.

From my experience, my care team was always open and willing to answer questions.  As patients, we are at the center of our care plan and one way I’ve found to empower ourselves is to learn more about the condition we’ll need to manage for the rest of our lives.  

Example:  I learned about “watch and wait” during my initial research. Since this was before my visit with the hematologist/oncologist, I was confused on why anyone with cancer would “watch and wait,” instead of receiving treatment immediately.  But when my hematologist discussed the different types of treatment with me, it made sense.  Again, this felt very similar to preparing for class.  I was able to ask questions and make appointments when I needed. The information I received helped me make the best decisions on this journey. I left each appointment feeling more comfortable with our (care team + me) approach and a better understanding of the research.

I took the same notebook to all of my appointments.  This made it easier to refer to previous notes or test results we had discussed.  I took detalied notes at every appointment as if I were a student.  I’d ask questions when something was unfamiliar or confusing, and my care team appreciated that. I would frequently refer to my notes from previous visits and could often make a connection with my learnings from previous visits.

Example: Our doctors are busy and have many patients, but they always make sure to answer our questions. During the months between appointments, I would jot down notes in my notebook so I wouldn’t forget to ask these. Having all of our notes in one place makes it easier to not only refresh our memory but to make sure we are focused on what’s important.

Review all of the lab test results.  Write down the tests where your levels (results) are lower or higher than the average range. No need to panic – just ask your doctors about these tests at your next appointment (or email them if you have access to that).  Your initial blood test may be the most comprehensive blood test panel you have ever received!  Not all of the results will be related to your diagnosis, so your cancer care team may not be able to answer all of your questions.  You can also ask your Primary Care Physician.  This also applies to your scans and other tests. Over time, you will learn which tests are vital for monitoring your diagnosis.  And, after some research, you will learn which tests/levels you may want to focus on to improve your health.

Be careful of which websites you use for your research.  The science behind blood cancers is constantly evolving, and everyone’s diagnosis can be different.  Learning from materials created by trusted medical professionals and organizations is key to developing an understanding that will prepare you to be an active participant in your cancer care.  

Example:  I learned my Vitamin D levels were low. I eventually learned that Vitamin D deficiency could impact my diagnosis, so I brought it up at a follow-up appointment with a member of my care team.  I started to take a daily supplement.  I learned that having normal Vitamin D levels is important overall, and when starting treatment.  Had I ignored this test result, it’s possible my treatment could have been impacted by this deficiency.