My mother and I decided on the day of my diagnosis that we wouldn't tell Sara the full story until we knew more. We had too many unanswered questions ourselves, and it would only worry Sara until we found out more. As tests and things were happening, I was explaining those to Sara but I wasn't really sharing results or news. Just that I needed to do more. She knew that I had a colonoscopy and a CT scan. Sara is curious and observant. She likes knowing how things work so she had lots questions. Medical diagrams and CT machines were Googled, and I explained the digestive system to her. We had a good laugh at this picture that came up on our Google search for CAT scan.
My colonoscopy was on a Monday. On that Friday I had a CT scan. The following Tuesday a nurse from the GI doctor called to schedule an appointment for me to talk to the doctor with the cheery and seemingly innocuous words, "He saw something on your CT that is going to change your treatment plan." Immediately I started worrying. I was at his office the next morning. As I expected, the news was not good - two tumors on my liver and a spots on lymph nodes. I walked out with another appointment - this one with my new oncologist. The next day was Thanksgiving so I had to sit on this news a little bit longer. I told my mom, and we agreed that I would talk to Sara after the holiday but before the end of the weekend so she would have time to process and talk to me. We got back from my mom's on the Friday after Thanksgiving, and I talked to her that night.
This was without a doubt the most difficult conversation I've ever had with anyone. I had run it through my head at least 1000 times in the past 10 days. And yet when I was sitting next to her the words just kind of tumbled out in random order. I can't remember exactly how it went but I remember her reactions and some of my responses. I told her that I had cancer and that I would be going through chemotherapy and surgery. I explained that chemotherapy is a series of drugs that basically wage war inside your body. The drugs are after the cancer but they hit other things too. That internal war causes symptoms like nausea, hair loss, and tiredness. I explained that I was going to feel pretty rough at times, but I didn't want cancer to steal our joy. I assured her that she will still get to do her thing - drama, swim, Girl Scouts, friends. And when I'm feeling good, we are going to do fun things again. I would do my best to keep our life as normal as possible but there would be a lot of ups and downs.
We talked about God and the role of faith in these hard times. I explained that so much of this was out of our control and that we had to have faith in God that I am in good hands with my oncologist and my surgeon. And I trust that God will meet our needs and be with us always.
Her next question was inevitable but felt like a punch in the stomach. "Are you going to die?" My answer was an rambling existential explanation of life and death that went something like this: "We're all going to die. That's part of life. Am I going to die from cancer? I don't think so. I think with treatment and surgery, my chances are good. I want to be here to see you graduate high school. And then college and everything else. I have a lot of reasons to fight and be strong." She's crying. I'm crying. This is the first time I had really cried about this. I was relieved to be able to get it out with Sara. We talked a lot about our worries and fears and back to faith. I wanted so much to promise her that everything was going to be fine but I didn't. I don't want to give her false hope or promise things I have no control over. I have always tried to be honest with her in a way she can understand.
After we got hold of our emotions, Sara shifted into practical mode asking questions and giving me to do items. "Who have you told? What do I tell my friends? I want to see Miss Cookie (her therapist). You need to tell my teacher." We talked about sharing the news with our friends for a long time. Who to tell, when, how, what to say. When you are an only child, your friends become almost like siblings, and those relationships take on greater significance. Sara has a tight knit group of friends. She had definite ideas about who to tell and how to tell them. She made it clear this was her show. I got the message, back off momma.
Telling her on Friday and having the weekend to process was the right decision. We spent the weekend hunkered down at home together. Sara turned down invitations because she wanted to be home with me. We put up the Christmas trees, enjoyed being together, and tried to have normalcy. By Monday we were rested, refreshed, and ready for the next steps.
Since our initial big talk we've had lots of little talks about it. As expected her feelings have been all over the map - mad, sad, scared, and worried. She gets frustrated that I can't do stuff I used to do like play in the snow. The cold is hard on me because of the neuropathy in my fingers. Getting milk out of the fridge causes my fingers to tingle a bit so snow sledding is out for now. I understand why she is mad and frustrated. Her life is different now and it isn't fair. If I'm completely honest, it's bullshit. She's 9 and I'm 42. I can't get mad because I know it doesn't help. But that's me. Sara can get mad. She's entitled to all of those feelings, and I make sure that she knows her feelings are valid and understood. The anger and frustration doesn't happen often and it passes quickly. Most often she is scared or worried. She comes from a long line of worriers on her dad's side of the family. She has a caregiver's heart and a thoughtful nature from that side too. She's a great helper - emptying the dishwasher, sorting laundry, picking up the house. She offers to get me water or snacks if I'm resting. There is a reason her dad nicknamed her "Little Sweetie". The beautiful thing about being 9 is the short attention span. She gets emotional and then it's time to check her iPad, go to swim practice, play outside, or watch tv. All in all I think she is coping very well - grades, behavior, and sleep are all good. She talks about it openly not just with me but with her friends' moms, her grandparents, and family. She shares with her friends who are supportive and love her dearly. She amazes me with her strength and ability to keep on rolling with whatever comes her way. She is my motivation and inspiration. I hope that I am the same for her.
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