“Why do you have to have surgery tomorrow?” seven year-old Tristan asks from the back seat after we drop off his 11 and 15 year old siblings this morning.
“Because I need to have something put in my body called a port. It’s a little container made of something cool called titanium that lets the doctors put some of my medicines into my body in an easier way.”
“Can you see it?”
“Yes, you will be able to see that there is a lump under my skin, about the size of a quarter. But you will only see the lump. You won’t see the actual thing because that will be inside my body. You know how I have the scar on the front of my neck? It will be like that, here, off to the side, same size scar but with a bump under it.”
“Is it like the bubble I had on my neck when I was a baby?”
“Well, that was a skin tag, so that was a lot smaller. And they were taking that away. This is something they are putting in to help make it easier to get some of my medicines. And you know when you go with me and I have blood taken from my hand? Well now sometimes they will be able to just take it from there instead. So it helps with a few jobs.”
“Will you have it forever or do they take it out when your cancer goes away?”
(Driving the car, trying to keep tears in check, knowing this is a vitally important conversation. I’ve explained this to him before but I know it’s hard for him to understand.)
“Well, honey, remember I had cancer when you were a baby? Well, this time the cancer is different. A lot of the time you can have cancer and the medicines and surgeries make it go away and it stays away for a long, long time. Maybe even forever. Sometimes any cancer cells that might be left go to sleep and just stay that way. Sometimes you have bad luck and they wake up. Mine woke up after six years. And now the cancer cells are in places that I won’t be able to get rid of them all for good. I am always going to have cancer. This time my cancer is the kind that is always going to be here.”
“You’ll always need medicine. And the thing they are putting in?”
“Yes, honey, I will always need medicine for my cancer. And I will probably need to have the port in forever too.”
Long silence
“I am glad you are asking me questions about it. I want you to always ask me anything. I will try to explain everything to you. I know it’s complicated. It’s complicated even for grownups to understand.”
Long silence.
“Mom, did you know people whose eyes can’t see use the ridges on the sides of coins to tell which one they are holding? So if you have a big coin with ridges that person would know it is a quarter?”
“That makes sense. How did you learn that?”
“At school. And so if it’s smooth you know it’s a nickel or penny. It’s important that they know what coin it is.”
“I think you’re right. That is very clever.”
( I stay quiet waiting to see where he will take the conversation next.)
“Remember when my ear tube fell out and was trapped in my ear and the doctor pulled it out and I got to see it? It was smaller than I thought it would be.”
“Yes, I thought the same thing.”
“I really wanted to see it. I wanted to see what it looked like.”
“Me too.”
“Can you show me a picture of it?”
“Of what?”
“The thing for tomorrow.”
“The port?”
“Yes. Or don’t you know what it will look like?”
“I know what it will look like. Sure, I will show you on the computer after school.”
“Okay.”
“It’s time for school but I am glad we talked about this. I want you to keep asking questions when you don’t understand something. I love you, Tristan. I hope you know how much. I know this is hard for all of us. I wish it were different. But we are going to keep helping each other. And talking about all of this is good. We can do that whenever you want.”
Link to Twitter
Lisa,
You handled that conversation in such a beautiful and brilliant way. I am in awe. Sending you a big virtual hug. Such tough heart wrenching conversations. I have found in my own world that many important questions came up while I was driving too. You reminded me to keep listening.
How I wish you didn’t have to have these conversations. But you handled it beautifully.
Thank you Lisa for sharing. Wow..I think every day about how hard it is to be a mom. I’m always wondering if I’m doing it right.. am I answering their questions well enough…I just have so much respect for you to be handling all that is in your life AND being a mom. I wish I had had these conversations with my mom when I was young and she was sick..it would have meant so much to me. I’m happy for Tristan. What a great kid.. Sending love..
*sob*
*hug*
I have been following your story for the past year and have not posted before. This post really struck me.
Your words are a gift to everyone living with this disease and those of us who lost loved ones to cancer. I have learned so much from you about love, honesty, and human relations.
Please continue to share your story. You are helping so many.
Once again you handled this with honesty and grace. Your children will be so very thankful that you were truthful and honest with them.
I will raise my glass this Thanksgiving to you…for “knowing” you and for the insight you have given to me.
Lisa:
I want to say something but I just don’t know what that something IS.
This gave me a knot in my stomach, tears in my eyes. I can’t tell you how your writing brings me right into your experience. I feel like I’m not just bearing witness to these moments — perhaps small, always profound — but that I’m there, I’m IN it. I feel them. I felt THIS conversation deep deep down.
Simply put, you are amazing. You are.
xo
Susan
You are a wonderful mother.
You gave the best possible answers. All at his level.
I think driving is good for such serious conversations, because you don´t look at each other.
Keep on driving, Lisa.
Tears in my eyes. Tristan and my daughter are the same age. You handled that very well. I bet you just wanted to pull over and hug him to death though, right? You are amazing.
My husband had a port earlier this year and my 7-year old was so scared of it. She wouldn’t go near his “boo-boo arm” if she could help it even though it was covered by the bandages. I think you and Tristan handled your conversation much better than we did.
Thank heavens for Tristan…you are so fortunate to have each other. And Lucy…and everyone else. But especially Tristan.
How difficult this must be for you all. Yet you always manage to strike just the right note and tone in your responses, especially with your children, but also in this blog. This must have been on Tristan’s mind all day too,a s evidenced in his greeting upon coming home. It’s a lot for a little guy to handle; he is so fortunate to have you as his mom! I think of you often and hope for many years in spite of the disease. Wishing your family a good time together for Thanksgiving.
Lisa, this brought tears to my eyes. I love the connections Tristan made. It must be so heart breaking to have to tell him the cancer is never going away. You are such an amazing mom to have these candid conversations with him (and Paige and Colin, too). Best wishes for an uncomplicated procedure tomorrow. I’ll be thinking about you.
Love, Julie
Some wonderful ladies shared this link with me and I just wanted to tell you thank you for sharing I am really glad I read it, I have three boys 12, 6, and 3, that I will be talking with about my diagnosis, I am worried about them and how they will take it but reading your blog gave me some courage to be ready for it, so again thank you.
Please also see the two posts “The Hardest Conversation” and “Some tips for talking to children about a stage IV diagnosis” (which applies to any cancer diagnosis actually). Those links can be found on the right side of the page under “Most popular posts.” You are in my thoughts.
I always read yet never comment but this post brought me to tears. I guess maybe because there are so many things that you are going to that I cannot relate to, but being a mom..that I can relate to. I think we can all appreciate your honesty with your kids and how you are walking them down this path with such love and tenderness. This road is unbearable for anyone- let alone for young children to understand. I thank you for sharing this-for letting us into your life.
Oh I love this one…
Lisa,
You did an amazing job with providing answers for your children. I can’t imagine how hard the dialogue would be on all ends, but you handled it with such grace. Thank you for sharing. Blessings to you and your family.
This was a beautiful, emotional, and real post. Would it be alright with you if I share this with a link back to your blog?
I hope your procedure to have your port inserted goes smoothly. God bless you.
Leslie
Yes! And thank you.
Best wishes for your port surgery. Set the alarm and drink lots of water right before midnight since your surgery is scheduled for afternoon.
The port site will be sore for a few days but should be much easier for infusions and all your blood draws!
I called mine my “doorbell”.
Don’t worry… I can have water until two hours before I arrive for it. I’ll be doing that all morning! Oh the irony that it’s the vein access I need to worry about… Thanks so much.
Aye, Lisa. Your son is lucky to have such a mum, and you to have such a son.
I hope the surgery goes well. Kisses all around.
David
Lisa, You are a shining star to many who need to have real conversations with their loved ones. . You take such wonderful care of your family and provide them with the facts…something so often not done in an effort to shield, but so wrong in that children can and want to know exactly what is happening. Knowledge is power to children just as it is to us and if they can ask the questions, they should have the answers.
I hope tomorrow goes well and the procedure will aid you in your treatment process. So many of us want the best for you. Thank you so much for sharing your thoughts and feelings.
Wow. Just simply wow. ((hugs))
Love your blog. Just found out my beautiful grandson has another mass, which is pretty much a death sentence. He’s been fighting neuroblastoma for about a year now. He is two years old. He has gone through the most brutal chemo regime possible without killing him, he survived a blood infection after surgery, he had so much radiation. But we played in the leaves this fall, and he was getting better, he was laughing and running again. He was putting on a little weight, my daughter was able to feed him, for the first time in months.
His beautiful mother, my daughter, totaled her car on the freeway shortly after she heard that. she had left the hospital for a short trip to gather some things they needed for an extended stay. she is ok. as ok as you can be.
I was there at his birth. I’ve been there every step of the way.
I have to say this about cancer. It is heartbreaking in every way, but as you so beautifully wrote, it teaches us more about love. I don’t think my daughter ever knew how much I loved her, I don’t think I ever knew how much I loved my grandson until I knew how completely I would change places with him, in a minute.
Anyway, beauty and sorrow are always woven together, I know that. You help us see that with your blog..
Thank you
The hardest part is talking to children. You said everything beautifully. The way you are handling it is going to make everything easier for them when they look back on this. A mother’s gift to her children! I hope you have many years left to live.
Although all of your posts dig deep into the recesses of my heart, this one digs the deepest. It isn’t just the words in your conversation. It is what is said in between those words. Your little boy loves you to the end of the earth. And you him. This is what life is all about. You are sharing such a wonderful gift with us all. Thank you for taking us there.
Lisa,
I am so deeply sorry that you are living this hell, that your children are. You are graceful and eloquent in your handling of your children’s emotions and questions. I am in the same place where you were many years ago when you were told “it’s just DCIS”. I am recovering well from a double MX. I have cried often, in the last few days, for the near miss that I feel I have had, a sort if guilt for being so fortunate and a deep gut wrenching sadness for those that didn’t get this “easy” BC diagnosis. Please know that I am praying for you every day and that the trial is successful. Hugs and hopeful thoughts to you and your family. Mary
I keep reading and rereading this. I don’t know what I’m hoping will happen if I read it again: maybe an editor will have taken a red pencil to it, circled the part about the cancer not going away and put a big X through it. Or, perhaps the aching poignance of Tristan’s inqueries will dull. Instead, the words are the same and so are my emotions: Sadness. Rage. Humility. Admiration. And a love as visceral felt as the ridges on the edge of a dime.
So beautifully said, Katie.
Kim
I am rooting for you, Lisa. I have been reading your blog for a couple of months, and much of what you write really strikes a chord with me. I am a 4 yr, stage 2, young(ish) survivor (diagnosed unde age 40) with a young child. I hold the hope of a cure for you in my heart. There, i said it. i know you say you will always have cancer, but fuck cancer, I want you to kick its ass and that’s the “prayer” I’m sending your way.
Lisa,
I hope you know you’re leading a life that is making a difference. You’re an amazing mother and I honour and respect your priorities. I also wanted to say that, for me, your openness and vulnerability show great strength and courage.
You’re in my heart,
Kim
Lisa, you saw this, no? The wedding video where the bride has cancer? (She credits part of her success after treatment to fighting for “us” and no longer being a single gal in the big city). What think?
Hi Lisa, just come across your blog surfing for info on chemo breaks. Your 6 six years caught my eye and has given me great encouragement. At the moment I am one year into chemo and everybody says how well I look. I have stage 4 colorectal cancer spread to liver and lymph nodes.
I have a hickman line that sounds very like your port. All I can say is I wasn’t looking forward to it but now its fitted it doesn’t bother me at all.Neither does the bottle I carry round with 2 days 5FU slowly infusing into me. 4 days at the moment , I didn’t notice the tube was still clamped LOL.
Read your When I die, very good , may I use it ? summed things up very well.
I shall just wish you all the best
Nick
Hi Nick… yes, the 6 years in remission before my metastases were good years. Wish I’d had more.
You are welcome to use that post (or anything else here) as long as you give credit… I’m glad it resonated, but sorry for the reason.
I wish you all the best as well. Drop in again anytime.
Lisa
Dear Lisa,
I am a breast cancer survivor (a little over a year from diagnosis). My oncologist is
at Sloan Kettering and I am thinking about you for tomorrow and send you my
best wishes.
As much as I hate that you had to have this conversation I love that you handled it with such grace and love and that you were willing to share it. It is a wonderful model of handling difficult conversations with a young child. Thank you so much for sharing it. You are helping not only Tristan but so many of us. Wishing you all the best.
I read this with a bittersweet sort of smile on my face – you handled it so, so beautifully. I have breast cancer – primary, thankfully, at least for the moment – and while I can’t know what you’re feeling, I have had plenty of sweet, difficult conversations with my 5 year-old son about it. A child’s honesty and acceptance are such wonderful, precious things. Tristan’s a very lucky little boy to have you as his mommy.
I’m a new visitor to your blog and I don’t usually leave a comment on the first post I read! This was so heartfelt and poignant that I had to….and I’m now I’m off to read the rest of your lovely writing! I hope that this day finds you feeling as well as possible, and that the sun is shining where you are. 🙂