Thursday, July 16, 2015

Lessons from Chemo

These last 18 months have been a roller coaster, mostly free falls but some highs. This week I was stuck at home (quite literally) and had some time to reflect. Here are the lessons chemo has taught me,

Chemo port surgery
- You are stronger then you can ever imagine. 
Each time our situation became worse I can clearly remember turning to my wonderful husband and saying something like, "If Emma ends up having cancer you are going to have to check me into a mental health facility." I was not joking. Then I got the call that it was cancer, cried for a few hours and put on my big girl face to fight this dragon. Each free fall it was the same, I thought there was no way I could handle more but more happened and each time I kept living.

- There comes a time when you must admit your faults and limits. 
Most people do not know this but when we were in Hawaii I was in a great deal of pain most of the time. I had extreme stomach pain and felt "off". The day we got back I went to my doctor and discovered that all this stress caused bleeding ulcers, vertigo, depression, and a heart condition. I was faced with the choice of medication or developing life altering conditions. I swallowed my pride and went to the pharmacy. Best choice I ever made.

- You realize that somehow ends will meet. 
We have been close...too close to ends not meeting at the end of the month. Somehow we always make it. I budget tighter, friends start a meal train, people do fundraisers on our behalf, random
First hair cut, half lost to chemo
packages and checks arrive unannounced with notes of well wishes. Are we still drowning in medical debt? You bet! However, we always have gas to get to appointments, a full fridge, clothes to wear, toys to play with, and love from friends and family to keep us going. It took this entire 18 months for me to realize that God will provide, He always does, and to let go.

- Always challenge, always get a second opinion, never lose hope.
 Doctors really now how to stop your heart and give you a panic attack...and they are not always right! A couple weeks ago an Oncologist told my husband to stop questioning, stop getting second opinions, and just trust in the team they have at the hospital. If I had listened Gracie would have had brain surgery by now and possibly chemo when neither are necessary, that should scare you. It frightens me to pieces. If I did not cart her off to Standford and it all ended up being overkill I could never forgive myself. I say do the opposite of what that Oncologist said, always question, always get a second opinion, only trust when you run out of options.

- Some people just do not care. 
No, it is true. Some people do not care if you have two sick kids, if one is immune compromised and must stay at home, if you had to force yourself out of bed that day knowing it was going to be a horrible chemo filled day. They just do not care. You cannot make them care. I have been baffled by people using a phrase like, "Well we all have lives out of this but..." No. No. No. They just do not get
Our friend Sophie before she passed
it. You also do not need to have them in your life. Just move along.

- As hard as it is to watch other children fight and lose to cancer you NEED to connect.
Tears, oh the tears and heartbreak. Few things are as tragic as watching a a child suffer. The first few months at chemo I tried to go with my head down, do not make eye contact, I have enough to deal with, do not see the bald children. I was alone. So alone. Then I reached out to a Chemo Mom and felt normal for the first time in this whole journey. Someone understood. When asked how I am doing and I say, "not great" they know what I mean. We all need that connection to people who understand. It will not be easy, children will die, but you need that relationship.
Make a Wish

- It is not all bad.
90% of the time life sucks. But sometimes we get a normal day, a Disney trip, a Make a Wish journey. When you get those days they mean so much more then they did before cancer. You soak it up like rain on a desert. It is heaven. 

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