Things We Have Learned

This has been, without a doubt, the most challenging time in my life.  Shawn’s sickness has been an emotional, intense, consuming and difficult experience.  I have also learned a ton and wanted to capture a few of those things here. Some of these things are just observations.  Others are more reflective.  But all of these are things I have learned or realized in the 3 months as part of this process. 

• Cancer vs. Child -  Cancer is terrible and no parent should have to experience their child going through a critical illness.  It is gut wrenching, scary and just dreadful. 
• Daily Battles - Battling cancer is a day-by-day, hour-by-hour emotional roller coaster.  There are good days and horrible days.  You can never predict which direction it is going to go. The best way to mentally prepare is to just take it moment by moment and not assume what is next.  
• Easy to Feel Hopeless - When someone is fighting Stage 4 cancer, the odds are against them and it is easy to start feeling hopeless.  But, you have to keep the faith that they will win the fight.  Don’t focus on all the bad news.  Have faith in God, see the path to healing and remain hopeful.
• Appreciate the Happy or Normal Moments - When you get good news or have a good day, appreciate it.  When you or a loved one is battling cancer, try to savor moments that feel “normal” and remind you of the happy times in the past and the happy times ahead.
• Loved One Happiness Guilt - If you are a loved one or caregiver of a cancer patient, do not feel guilty when you are happy.  I distinctly remember a time several days after we learned of Shawn’s diagnosis.  I was walking in the sun, listening to some music and I felt happy.  As soon as I felt that happiness I had a strong feeling of guilt wash over me. How could I be happy when my son was battling a deadly disease?!  How can I be happy when he is so miserable?  How could I be so selfish?!  It took me several weeks, but I now realize that was wrong thinking.  Shawn Jr certainly does not want us to be miserable and it is important that we continue to enjoy the life God has blessed us with and not get sucked into the darkness of cancer.  Caregivers and loved ones should try to do things that make them happy and don’t feel guilty for being happy. 
• Health Care is a Communications Business - Patient care is a communications business. One of the most important parts of the job as a health care professional is the ability to carefully listen and engagingly and patiently communicate.  Poor listeners and abrupt speakers make for bad doctors and nurses.  Those health care professionals that listen intently, speak deliberately (without assuming any knowledge) and patiently spend time with their patients are greatly appreciated and are perceived as more competent.  
• Being a Doctor is Hard - We are at a world class hospital - MD Anderson.  These are some of the best doctors in the world.  But, there have been several times in this process that the doctors did not know what was happening with Shawn Jr.  Despite the fact that these doctors have seen nearly everything in cancer patients, each case is different.  This is an inexact science.  It is amazing that they are able to do what they do because I now understand, more than ever, that being a doctor is hard. 
• Comfort for the Patient is a Priority - I never appreciated how important it is for the patient to be comfortable, until it was my son.  When he is comfortable, it seems possible to fight this fight.  When he is in pain, nauseous, tired, or anxious, the mountain seems almost too high to climb.  In that moment, all I want is for him to be comfortable.  Unfortunately Shawn has not been comfortable for most of the past 3 months. 
• Food and Sleep are Critical - Doctors and nurses are always talking about how important it is to sleep and eat.  I can attest to the fact that they are right.  There was a stretch of about a week when Shawn Jr was feeling very nauseous and did not eat.  He lost about 20 pounds and it  resulted in a string of other health issues.  For about 10 days, Shawn did not sleep. This caused him to be irritated, exhausted, and feel sick all the time. This made it almost impossible for him to make progress and get better.  
• Health Care Payment Systems Are Broken - Health care payment systems in the US are just broken.  I did a blog on this topic here.
• Primary Caregivers Need to Be Engaged Project Managers - The doctors and other health care professionals at world class institutions like MD Anderson are great.  But, they don’t know everything and are generally siloed (i.e., dealing with their area and nothing else).   While the primary doctor is responsible for the integration of care, it is important for the primary caregiver to help serve that role.  Caregivers need to communicate concerns and questions to the various medical teams to help ensure that they are aware of what others are doing.  Ask questions and challenge everything.
• Cancer Sucks - I can confirm that cancer sucks.