Tough Conversations - Telling Sara

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. 

November 16 - The News

"You have a mass and it looks like cancer. We took a biopsy to be sure."

And with that the fog descended. The next few days and weeks would pass in a blur of doctors, waiting rooms, testing facilities, and questions. 

In October I was at my family doctor following up on my blood clots from the summer when I mentioned that I was still having digestive system issues.  He didn't think it was serious but he sent me to a GI specialist for a colonoscopy. My mom was with me on the Sunday before my appointment for my liquid diet.  We took Sara to school and headed to my appointment on Monday morning. The procedure itself isn't that big of a deal because you are asleep for it. Sitting in the waiting room and realizing you are the youngest person in the room by decades was kinda weird, but that was shades of what was to come.

It was my GI doctor who delivered the news after the procedure. I'm thankful that my mother was in the room when he explained everything.  My mother is level headed and practical, and she makes me laugh.  Between hearing the word cancer and the hunger from 36+ hours without solid food, my cognitive function was at its nadir. He said, "Things are going to happen pretty fast now." In my 42 years, I've learned that when a medical doctor says those words, they mean it. These are not people prone to hyperbole or soap opera type drama. Things did happen fast.  The nurse came in to set everything up and I was too dumbfounded to do anything but nod.  I walked out of the office with appointments with a surgeon, an endoscopy and ultrasound, and a CAT scan. Thus began a trend of trading one appointment for two or three more.

As we walked out of the office shell shocked, my mother said, "You need to think about what you are going to tell your Daddy." I nodded.  I said, "what am I going to tell Sara?"  The rest of the day my head was spinning with questions, things to do, plans to be made.  I knew right away that I wasn't ready to tell Sara.  Mom and I decided that she would deal best with facts so we would wait until we knew more before we told her.  It was also 10 days before Thanksgiving. I couldn't tell my friends yet.  I didn't have the words.  I was trying to act normal even though I was sleepwalking through my days and lying awake with my mind spinning at night.

The Beginning

When this illness saga began, I said I wasn't going to post about it Facebook.  I'm kinda proud, independent, and private.  I think what I meant was, I'm just not ready to share with the world yet.  I wasn't even ready to share it with my closest friends.  It took me a bit to do that.  I'm writing now partly to share progress and to help me remember the details, but mostly, I'm writing as a way to really process what has happened and is happening to my body, my brain, and my life. I'm a thinker more than a feeler so my first reaction was practical not emotional.  I have feelings, but I need to think about them awhile to know what they are.  There have been a lot of thoughts and feelings to process. Things came at me so fast at first that I couldn't feel or even think too much.  I could only react and follow directions to the next appointment or test.

  

Two months ago, I went in for a colonoscopy and received news that I had colorectal cancer.  Since then I've had a MRI, a CT scan, a PET scan, an endoscopy and ultrasound, a port installed, three chemotherapy treatments, and countless appointments with either my GI doctor, my oncologist, or my surgeon.  In the midst of all that we celebrated Thanksgiving, Christmas, and New Years.  It's enough to make any sane person's head spin.  Luckily I was not entirely sane to start with.

After three chemotherapy treatments, I can say I'm tolerating it pretty well.  It is not easy or fun, but it is not beating me up too badly either. The nausea has been minimal to non-existent. I haven't lost my hair and probably won't with the chemo drugs I'm taking. My symptoms range from the normal fatigue and low energy to the annoying cold sensitivity in my fingers and in my mouth.  I wear gloves everywhere because my fingers tingle.  Because I can't tolerate cold drinks, I drink room temperature Coca-Cola which is an abomination to this Georgia girl.  

Mentally, I'm feeling pretty optimistic about my treatment and the prognosis.  I am relatively young, and aside from having cancer, I'm in great health. From a faith perspective, I know that God is with me and will stay with me.  I know that he has put people in my life who have and will help and encourage me as I go through this.  I know my needs will be met, and I believe that healing is possible.  My job is to keep moving forward and have faith.

I'm catching up on my chronology of events, processing as I go.  I will be writing more in the coming weeks about how things have unfolded and the details of my illness.  I'll cover the serious to the silly. Being able to laugh at the absurdity of it lifts the weight and has gotten me through some rough times. There are also some serious topics like conversations with Sara and the trials and tribulations of walking a 9-year old through an illness.  By the way, Sara is faring well all things considered.  She's resilient and yet pensive.  She's also 9 years old and pretty into her own stuff too.  Like me, she is surrounded by great people who help and encourage her. 

The most surprising thing to come out of the past two months is the outpouring of love and support from expected and unexpected sources.  I'm surrounded by loving and supportive people from the closest friends to mere acquaintances.  People have been so kind and so generous.  I have to admit that it kind of rocks my inner cynical core a bit, and that isn't a bad thing. Sara and I are both so loved and so blessed. 

Been a long time

I haven't written a post in 3.5 years.  A lot has happened since I started this project as an effort to unclutter my space.  I really uncluttered when I got divorced two years ago.  I wouldn't recommend that as an uncluttering method.  However, it did change my life.  The most recent change and the reason that I am resurrecting the blog is that I've been diagnosed with cancer.  I'm using this blog now to write about that experience.  It's changing my life in so many ways and the changes have just begun. I'm curious to see where this experience takes me so I'm sharing it here.