It's been a month now, but it's still hard to tell people.
Since the first day I have told lots of people, in a variety of different ways. Some ways work better with some folks, and not so well with others. I am hopefully getting better at reading the situations. Perhaps it's like giving a person a shot, and I am figuring out how to do it fast with the least pain. I guess you will have to ask my friends and family to rate my work!
In the first few days I told some folks but it was awkward because I didn't know much and I was firmly in denial.
When I left the doctors office I was driving to see my friend's baby and I told my mother. I apologized first. For the past 20 years when I had bad news I would call this one friend. He would talk me through the shock stage and so by the time I called my mother I was calmer, rational and I had a plan in place. This time... the leukemia time... I didn't talk to him. So, I had to tell my mother without the benefit of a buffer. No calm, no logic, just tears and the basic words "Mom, they say I have leukemia." Mom responded with the right words of comfort and said she wished she could be there to hug me at that moment. It was a Friday afternoon and traffic time coming so I asked her not to drive while upset and in traffic. She agreed, but I know it was hard. She then distracted me with a story about her bills and taxes. It was like her to be practical and there really wasn't much else to say at that point because we didn't know what kind of leukemia or any details. She told me later she fell apart when she got off the phone. That is what I was worried about. It sucks to lose a buffer.
Told my sister the nurse, and she said she would call my two brothers. I called them both after I held my friends baby and collected myself to a degree. Truth be told, I wasn't so sure about telling everyone because I felt like this was a mistake and it would be embarassing if it turned out to be false. That denial was a fleeting hope and it mixed with my prayer that this was all a bad dream.
Once I spoke with my brothers who were supportive and full of detailed questions, I knew I would be facing my biggest challenge... telling my daughter Lili. Several folks had asked if I was going to tell Lili anything before seeing the oncologist and confirming the type, etc. The answer was always YES. Lili was going to be told on November 2nd, because she wouldn't forgive me if I handled it any other way.
Lili is adopted. She lived with her birth mother for 10 years, then in a foster home for 18 months. Lili has endured untold losses already in her short life. We have always said that telling the truth is the only way to have a strong family foundation of trust. Before coming to live with me, Lili has had her trust broken, her heart torn apart, her family life destroyed. The very last thing I would do to her is not answer her questions honestly. Besides Lili is vigilant about asking questions related to my health and wellbeing. Lili was going to ask me about the doctor visit when I picked her up. I had to figure out how to tell her, and I knew it would be in the car.
Sure enough Lili opened the back door to put her school bag in the car and her first words were "How did it go at the doctor?" I couldn't make my voice work. I was speechless. She just stared at me and crawled into the front seat. She asked me again. I finally just said it. "Lili, the doctor says they think I have leukemia." We both began to cry. I am still trying to drive as my logic has flown out the window. Lord knows I could have pulled over, but there seemed to be an urgency to get home. We were not on the freeway so we cried and talked all the way home.
I answered her questions as best I could. She wanted to know if I was going to die and leave her alone. I told her I didn't plan on it, but that each day when we say goodbye we don't ever really know if we get another day together. I said that someday I would die, but I hoped it would be long time from now. She said she wants me to be a turtle because turtles live about 200 years. Lili asked if I would lose my hair, and I said I had no idea. She wanted to know if I was going to be very sick and in the hospital, again I didn't have any information. Finally, I just said "I'm so sorry Lili. You don't deserve to have any more pain in your short childhood." Then, holding hands I began to joke around with her. Saying things like, "Lili, I'm sorry, it was bad enough that you have the fat mom, now you will have the sick mom too." We both giggled. I then told her I didn't think God would add bald to that mix as it seemed like too much already.
On the way home we talked honestly and laughed where we could. Over and over I told her how much I loved her and how I was sure that God brought us together to accomplish great things. Trying to hold it together and the car in the lane, I tried to reassure Lili that there were at least 99 people who loved her and who would never ever let anything happen to her even if something did happen to me. We laughed again because it used to be 'a 100 people' but we were on the outs with an old friend at the moment.
Lili has the gift of being able to share her sacred story. She can convey great emotion and tremendous pain with words. I am continually amazed at how she grasps the importance of forgiveness and maintaining an openness to others. Lili's ability to have an open heart that wants to share love and life is a testimony of God's infinate healing power. She is truly my inspiration to step out and try love again. The bible says... "a little child shall lead them."
And so goes my telling of the leukemia sacred story. Sometimes I work in the information between mundane requests kinda like 'subliminal information.' An example, "Sure we can go to the movies next Tuesday. I have leukemia. Would you like to go for pizza prior to the show?" People will say, "I think you just said you have leukemia. That can't be right." I agree with them.
Some folks say things like "You're kidding," or "Shut up," or "No way you eat organic." Again, I still find it hard to believe.
Lili and I start to come out of our daze as we reach the house a whole 10 minutes away. She asks if I told her Gran, my mom. Lili then asks about family members and friends who she thinks will want to know. Then Lili takes in a deep breath and asks, "Have you told CJ?" To which all I could do was cry. Lili knew I hadn't told her. Finally I say, "No, I needed to hold your hand before I can call her."
CJ's husband, Dan, had CML. Lili knew that Dan had leukemia and died after a couragous 9 month battle. We called that first night, and left a message for CJ to call us back. It was just too much to imagine that I would have to call her and tell her I had the same disease as Dan. I just couldn't believe it. About 4,000 people in the US get CML, what would be the likelihood that we would know two people with it.
Come to find out, my family would know FOUR people other than me who had CML. Who knew?
The sacred story continues and 'Full Blown DENIAL' sets in.
Since the first day I have told lots of people, in a variety of different ways. Some ways work better with some folks, and not so well with others. I am hopefully getting better at reading the situations. Perhaps it's like giving a person a shot, and I am figuring out how to do it fast with the least pain. I guess you will have to ask my friends and family to rate my work!
In the first few days I told some folks but it was awkward because I didn't know much and I was firmly in denial.
When I left the doctors office I was driving to see my friend's baby and I told my mother. I apologized first. For the past 20 years when I had bad news I would call this one friend. He would talk me through the shock stage and so by the time I called my mother I was calmer, rational and I had a plan in place. This time... the leukemia time... I didn't talk to him. So, I had to tell my mother without the benefit of a buffer. No calm, no logic, just tears and the basic words "Mom, they say I have leukemia." Mom responded with the right words of comfort and said she wished she could be there to hug me at that moment. It was a Friday afternoon and traffic time coming so I asked her not to drive while upset and in traffic. She agreed, but I know it was hard. She then distracted me with a story about her bills and taxes. It was like her to be practical and there really wasn't much else to say at that point because we didn't know what kind of leukemia or any details. She told me later she fell apart when she got off the phone. That is what I was worried about. It sucks to lose a buffer.
Told my sister the nurse, and she said she would call my two brothers. I called them both after I held my friends baby and collected myself to a degree. Truth be told, I wasn't so sure about telling everyone because I felt like this was a mistake and it would be embarassing if it turned out to be false. That denial was a fleeting hope and it mixed with my prayer that this was all a bad dream.
Once I spoke with my brothers who were supportive and full of detailed questions, I knew I would be facing my biggest challenge... telling my daughter Lili. Several folks had asked if I was going to tell Lili anything before seeing the oncologist and confirming the type, etc. The answer was always YES. Lili was going to be told on November 2nd, because she wouldn't forgive me if I handled it any other way.
Lili is adopted. She lived with her birth mother for 10 years, then in a foster home for 18 months. Lili has endured untold losses already in her short life. We have always said that telling the truth is the only way to have a strong family foundation of trust. Before coming to live with me, Lili has had her trust broken, her heart torn apart, her family life destroyed. The very last thing I would do to her is not answer her questions honestly. Besides Lili is vigilant about asking questions related to my health and wellbeing. Lili was going to ask me about the doctor visit when I picked her up. I had to figure out how to tell her, and I knew it would be in the car.
Sure enough Lili opened the back door to put her school bag in the car and her first words were "How did it go at the doctor?" I couldn't make my voice work. I was speechless. She just stared at me and crawled into the front seat. She asked me again. I finally just said it. "Lili, the doctor says they think I have leukemia." We both began to cry. I am still trying to drive as my logic has flown out the window. Lord knows I could have pulled over, but there seemed to be an urgency to get home. We were not on the freeway so we cried and talked all the way home.
I answered her questions as best I could. She wanted to know if I was going to die and leave her alone. I told her I didn't plan on it, but that each day when we say goodbye we don't ever really know if we get another day together. I said that someday I would die, but I hoped it would be long time from now. She said she wants me to be a turtle because turtles live about 200 years. Lili asked if I would lose my hair, and I said I had no idea. She wanted to know if I was going to be very sick and in the hospital, again I didn't have any information. Finally, I just said "I'm so sorry Lili. You don't deserve to have any more pain in your short childhood." Then, holding hands I began to joke around with her. Saying things like, "Lili, I'm sorry, it was bad enough that you have the fat mom, now you will have the sick mom too." We both giggled. I then told her I didn't think God would add bald to that mix as it seemed like too much already.
On the way home we talked honestly and laughed where we could. Over and over I told her how much I loved her and how I was sure that God brought us together to accomplish great things. Trying to hold it together and the car in the lane, I tried to reassure Lili that there were at least 99 people who loved her and who would never ever let anything happen to her even if something did happen to me. We laughed again because it used to be 'a 100 people' but we were on the outs with an old friend at the moment.
Lili has the gift of being able to share her sacred story. She can convey great emotion and tremendous pain with words. I am continually amazed at how she grasps the importance of forgiveness and maintaining an openness to others. Lili's ability to have an open heart that wants to share love and life is a testimony of God's infinate healing power. She is truly my inspiration to step out and try love again. The bible says... "a little child shall lead them."
And so goes my telling of the leukemia sacred story. Sometimes I work in the information between mundane requests kinda like 'subliminal information.' An example, "Sure we can go to the movies next Tuesday. I have leukemia. Would you like to go for pizza prior to the show?" People will say, "I think you just said you have leukemia. That can't be right." I agree with them.
Some folks say things like "You're kidding," or "Shut up," or "No way you eat organic." Again, I still find it hard to believe.
Lili and I start to come out of our daze as we reach the house a whole 10 minutes away. She asks if I told her Gran, my mom. Lili then asks about family members and friends who she thinks will want to know. Then Lili takes in a deep breath and asks, "Have you told CJ?" To which all I could do was cry. Lili knew I hadn't told her. Finally I say, "No, I needed to hold your hand before I can call her."
CJ's husband, Dan, had CML. Lili knew that Dan had leukemia and died after a couragous 9 month battle. We called that first night, and left a message for CJ to call us back. It was just too much to imagine that I would have to call her and tell her I had the same disease as Dan. I just couldn't believe it. About 4,000 people in the US get CML, what would be the likelihood that we would know two people with it.
Come to find out, my family would know FOUR people other than me who had CML. Who knew?
The sacred story continues and 'Full Blown DENIAL' sets in.
3 comments:
Thank you for sharing your life and feelings. I woke up and logged on hoping you had posted. My friends Christy and Ruthie asked if it would be ok if their church groups remember you in their prayers. I shared your blogspot with them. Hoping you are feeling good today. You said that you thought the first month on the drug would be the hardest. At least that is what someone told you. Hope you are keeping your energy up and not working too hard. Thinking of you always. Dixie
Thank you so much for your blog..I truely, deeply know exactly how you feel. I have elected not to tell my kids, my daughter is 6 and I am not one to want to frighten her with this because she could not really understand it. My step daughter is 16 and very fragile emotionally and her birth mother is a total and utter mess in all possible ways. She spends all her time worrying that she will die (her mother) and i don't need her doing that with me too. I told family and friends.. the denial is easy when everyone says.. oh you are so healthy, you look so young etc etc.
I am with you... visit my blog and we can share.
Try Daily Strength, it helps a lot.
prayers to you and yours
debbie
Dear Rhonda
Oh boy - yes I cried reading your story! Wow. Your daughter Lili is beautiful and sounds like an incredible young lady!
You have an awesome way of expressing yourself with words and I really look forward to your next entries.
I am so sorry that you have this cml - but believe, never give up and all those things! I keep in my mind the picture of that awesome party that will happen when the real cure is found to this disease....
Thank you for sharing your story like this - it gives me an insight into Steven's emotions too.
Love and light
Annie
Steven's mom
http://livingwithcml.blogspot.com
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