Posted by: justenjoyhim | January 1, 2008

cancer doesn’t play fair

A 6-year-old boy really shouldn’t have to be told that his mommy has breast cancer (age-appropriately, of course).

He shouldn’t have to face the thought of his mom losing her hair. *sigh* I had put a call into Dr. Smart Cookie on Sat. because Nate had been acting out — obviously he had been feeling the tension around the house and we knew that we had to tell him something and soon. Dr. SC has been on vacation so I left a message on her voice mail hoping that she would check it and help me out with this onerous task. Things were getting to the point where we just couldn’t wait any longer.

Anyways, as she went over ways to tell Nate, things I should include when I told him and I mentioned telling him that I would be losing my hair, she said that knowing Nate, he might actually think that would be something funny. So when I told him the other night — which was a spontaneous decision that came about because Frank started telling his brother, John over the phone with Nate in the same room, “We have some bad news . . . . ” So I took Nate by the hand and into our bedroom and started talking about how I have something called breast cancer and what it means and that the doctors are going to be working very hard to get rid of what’s in my breast that’s not supposed to be there.

He asks, “If they can’t get rid of it, are you going to die?” The thing here is that I can’t make promises to him that I can’t keep so I simply stress so him that the doctors are going to do everything that they can to get mommy well. That it doesn’t hurt. That no matter how I feel, he’ll always be taken care of by someone. If Mommy isn’t feeling well, then Daddy or someone else.

And then I mention the hair loss, thinking he might possibly be distracted by that.

Well, he was distracted by that. But not in a good way.

He was horrified. He moved away from me, off of the bed. In fact, he shrunk beside the bed like he was hiding from me and said that he didn’t want to see me bald, ever.

I told him that it wasn’t going to happen right away, that I would get a wig and one that looks as much like my own hair as possible, that I would wear it around him all the time, that I would be careful that he wouldn’t see me without hair.

He asked if when I go to buy a wig, the people will think I’m a monster.

Later that night, as Frank and I put him to bed, we tried to reassure him. I told him that I’ll always be the same person, no matter what kind of hair I have. I tried to make it humorous and he even laughed with me. If I have long purple hair, clown hair, broccoli hair . . . . he came up with a lot of silly things himself. We laughed, we talked seriously. I thought it was better.

Then tonight, he didn’t want me to leave at his bedtime and tried to hang onto me. It nearly split my heart in two, but as Dr. SC said, we have to try to keep the discipline consistent with what we have been doing, which, to be quite honest, is very very difficult. But we’re trying. So I left his room with him wailing,

Mommy, don’t go. Mommy, don’t go.

I can’t stand it as I walk away.

Frank’s nerves are shot and he goes back and tries to deal with Nate. Nate rages and tears down his beloved bed tent.

I can’t stand it. I know I shouldn’t, but I can’t help it and I go into his room. I ask him if he’s scared and he says yes. I tell him that I’m scared some too (Dr. SC said admitting that Frank and I are scared sometimes too is fine) and he said that he’s mostly scared of when I’m going to lose my hair. He said that I’m going to become a scary, old person that he won’t know.

My heart breaks all over again as I try to reassure him that I’ll be the same person. He keeps saying that I won’t be, that I’ll be a scary old person that he won’t know.

I help him put his bed tent up and I hug him for a long time and tell him how much I love him. He tells me he loves me too.

I leave his room crying.

I say to Frank, “6-year-old boys shouldn’t have to go through this.”

I hate that my precious little boy has to feel afraid because of my cancer.

I hate cancer.

Responses

Get rid of The Bitch. Just get rid of her. I hate cancer too. I’m sorry you all have to go through this. Its not enough to say, but its all I have. Praying with all my energy to get you past the hard stuff.

Judy,

I hate cancer too. Hate it.

I was wondering how this would go with Nate and I want to applaud you for your handling of such an impossible discussion. My heart broke for you both as I read this, imagining how the six year-old mind works. That’s one of the hardest things about having kids. When you’re up against the wall, you have to put it aside to stay strong for them. Your love will see him through all these rocky times. Don’t forget the power of your love for him.

One day at a time, your amazing family will get through this.

Tina

Ugh, I’m sorry Judy, Frank and Nate. :( I just saw these dolls the other day — I can’t remember where — and googled for them.
http://www.kimmiecares.com/
Do you think it might help process things at all?

Judy,

I don’t know exactly what Dr. SC told in in regards to how much information to give him at one time. IMHO (and with my own personal experiences) difficult concepts to understand are best kept as simple as possible and given in small doses. For example, when I started dialysis my son was 3 - while I’ve never lied to him or not shared the truth, I also realized that a 3-year-old couldn’t even pronounce “dialysis” let alone even begin to understand. SO, in the beginning it was as simple as “mommy goes to the doctor three times a week to stay healthy” and that was easy enough to get used to. As he gold older and things were more and more complicated, I gradually told him more and more and explained in greater detail what was happening to me and my body. By the age of 5 or 6 he could tell you more about kidneys, how they work and what they do than most adults. Visiting “The Bodies” exhibit at our local science museum fascinated him and gave him the opportunity to see real kidneys which made ‘kidneys’ even more tangible and ‘real’. Preparing him for my transplant (which happened on a much more accelerated time-line vs. dialysis that lasted years) was a bit more challenging, but at the same time, employing the “small bites” concept (just discussing it more frequently) worked wonders.

ALSO, involve Nate in ways that can distract him from what is actually happening. If Nate is sensitive to your loosing your hair, then involve him in helping you to pick out wigs or scarves/coverings - you might just find his sense of humor returns when he realizes he can choose a bright pink wig for Mommy to wear or help her buy a John Deere head scarf! Another suggestion to include him would be to let him be “in charge” of something as simple as reminding you it’s time to take medicine (even if you’re not taking a ‘cancer’ drug, a vitamin would work!) - get him a watch with an alarm and put him in the very important position of “executive time keeper”. Buy a calendar and mark days when you’ll have treatments and how many are left and together count down the days by “X-ing” them out until all the days are counted down.

My point is - the more things he can ‘control’ the easier it will be for him to understand, cope and feel like he is a vital part of your recovery (because he is and will be !!)

And most of all, you’re ALREADY doing the EXACT RIGHT THING by reassuring him that its OK to be scared or sad or afraid and that YOU ARE TOO. If he sees your vulnerabilities like he FEELS his, he will know that no matter what, “you’re in it together”.

Em and Tina — thank you!

Dawn — bless your heart! Those dolls look great. I already went and ordered one. I think it might really help along with the book. THANK YOU!

Krissi — thanks for the great suggestions! Dr. SC said to break it down into a few conversations, but right now he’s really focused on the hair loss so we can’t get quite past that at the moment. As per her suggestion, I said I have something called breast cancer and what that means is that something is growing in my breast that’s not supposed to be there and the Dr.s are going to give me medicines to get rid of it.

She wanted the main points to be: that we be age-appropriate and truthful; and that we make sure he knows that he’ll be taken care of throughout.

Her other points were to let him ask questions, to not feel bad if I don’t know answers to all of his questions, to let him know that cancer isn’t contagious (he can’t “catch” it).

I like your ideas of giving him control over some things. I was thinking I’d call her tomorrow — she gave me her cell phone # — and tell her what happened and see if she has any ideas for how to approach things. He’s also regressing in that he wants to sleep with me again, and I’m definitely saying “no” to that.

GAH, it’s so hard!!

I’m sorry to read about your troubles.

I don’t think there are any hard and fast rules for how to play any of this - it depends on you and it depends on the child. And it’s all very well for medical experts to give you advice, but you know your boy and your family better than anyone, and they aren’t you. You will do the best job that anyone can.

Krissi is right. It takes time for children to assimilate information. Just try to go with the flow, if you can.

All best wishes to you, from London.

Aw, my heart breaks for you all. I’m sorry you’re all hurting over this… But it sounds like you presented it well to him. And i would think tha tthe first night especially, rules are good to break. He needed his mom to come back and cuddle.

I hate that your son has to deal with his momma being sick. BTDT in my household it is hard on children to see their parents ill and dealing with stress their little radars go up. They are way more preceptive then we think. My only advise to you would be “Be as honest and forth right as you feel is appropriate, talk about you being sick, let him participate in helping YOU (this is a big one kids like adults need to feel needed during a crisis), snuggle more and start doing more quiet activities now so when the quiet is needed your child is used to that (we have hundreds of movies now my kids will all sit for a whole movie and that is a pretty good nap), if you do not have a TV in your bedroom I would get one there is nothing like a little extra morning snuggle with entertainment for a little one ie:cartoons, take care of you and let others help”
That all I have for wisdom and that is learning from experience. I wish you the best :)

I just started reading your blog, and I’m so sorry for what you’re going through. You and your family are in my thoughts.

I HATE cancer too! I think you handled things right by going back into Nate’s room to reassure him….now is when he needs the reassurance most. Right now this is all so new to him. I think it’s possible that he won’t be as alarmed by your hair loss as he thinks he’ll be. I remember when we were coming back from China this summer and my MIL (who is also battling breast ca.) had lost all her hair in our absence. My kids are younger than Nate (2 and 3) but they didn’t even notice that Grandma had no hair! Till this day, they’ve never made a big deal about it. Sometimes she has a wig on sometimes not. I even have a funny pic of my dd when she decided to make a joke and try on Grandma’s wig. So, I’m thinking maybe Nate will slowly adjust to the idea between now and the time the hair loss begins.

(((hugs)))…I know this conversation with your son had to be one of the hardest you’ve ever had in your life.

I’m just so sorry, Judy. I know this is the part you’d probably been dreading the most, and I’m so sad for you, and for Nate.

I have a good friend whom I’ve mentioned before, who has just recently moved into the “recovery” stage of her breast cancer. Would it be OK if I asked her if she would e-mail you, maybe? I don’t want to speak for her, but she has a young son too, and may have some tips, or just be a good ear for you as you try to navigate these waters.

Many hugs to you and extras for Nate…and Frank, too.

I hate it too.

The books are on the way so they should be getting to you in a few days. Two of them are picture books, one focuses on losing hair I think. Hope these help.

((((hugs))))

Oh, honey, this is just so not fair. Damn damn damn. I wish I knew what to say, but I just don’t and only wish we could get together again soon and talk over coffee. Just know that I’m thinking of you.

Damn damn damn.

I hate cancer too. This is a terrible time for you guys, and a terrible time for him too. I’m no psychologist, but our family decided that discipline be damned, a boy needs his mommy when she’s sick. My 3 year old was told right away too (he had to be told, I was in bad shape), and he helped me pick out hats. He stuck close by me all throughout my chemo treatment, actually, and we made chemo days special days, where mommy would lie down and watch a movie with him when I got home (we don’t watch tv much otherwise). We spend a lot of time together, even if it’s just cuddling, reading, doing puzzles, etc. when I’m recovering from the chemo. We also let the nighttime discipline go — I stay with him while he falls asleep and he crawls into our bed in the middle of the night and we just let him stay. I know it may be more difficult to get strict again later, but that’s just the way it is. He needs me and I need him and that’s okay.

Didn’t mean to go on and on in your comments … my prayers are with you guys and I hope that you find a way to make this work. It’s a very hard time, but you CAN and WILL survive it.

P.S. The book “In Mommy’s Garden” looks helpful in terms of explaining what cancer really is. I saw it at treatment one day, and it looks really neat. http://books.canyonbeach.com/inmommysgarden/

Also, I explained hair loss as being a symptom of being sick. It helped my kid understand what was going on in terms of timeline — and, best of all, when my hair started growing back, he made the connection all by himself, saying “Mommy’s hair grows up — means she’s getting better!” Which I am, and it’s great that my kid understands too. Maybe that will help….

((((((Judy))))))), ((((((Frank)))))) and ((((((Nate))))))

Oh Judy.
As I mentioned in your latest post - I’ve only just come to know of what you’ve been going though.
From an adoptee’s point of view - don’t worry about being too strict on Nate - he’s going through hell right now.
My a-mum had breast cancer when I was 10 - but everyone kept it all from me - I was just told that she had to have an operation - no details.
She actually had to fight to get the op - as so many doctors ignored her - and it perhaps was not treated early enough because of the wait. (we’re talking 1978 here)
Anyway - years later - I was 17 - in the middle of my final high school year. I start feeling this tension around the house - big time. And I overhear a conversation with mention of a doctor - a name that I remember - but don’t know why.
Finally - weeks later - my mum comes into my room as she hears me crying. When she asks me whats wrong - I said that I know something really bad is happening - and demanded to know what was going on.
She’s hugged me - and gently told me what happened when I was 10 - and told me that the cancer was back.
I took her to many of her therapies.
We had 1.5 years more together. She died just before my 19 b’day.

I’m not telling you all this to upset you - you MUST fight this bitch.
But - you also must include Nate as much as possible - age appropriate of course - but try not to talk about it while he is ANYWHERE near. He will know that bad stuff is happening - and basically he is shit scared of losing yet another mother.

With secrets and hushed voices - comes an adoptees mind blowing things even more out of proportion than they already are.
Be honest. Involve him. Let him know what’s happening - and let him know what you’re feeling. He will learn through you - that it’s OK to feel the whole range of emotions throughout life. Along the way you can explain that you feel super angry about things - but you don’t tear things apart physically - he needs other outlets - find them for him.

I’m still in shock about all of this dearest Judy. I’m so sorry that this is happening to you.
Keep Nate and Frank close by your side.
I’m thinking of you.
(all just my 2 cents worth - of course)

Also - another hint - video moments together. Lots of moments. Especially silly ones. I wish we had a vid recorder when I was growing up.

Anyway - I’ll go now.
Love you beautiful.
Poss. xxxxxxxxx

Sorry - in my comment - I said not to talk while Nate is nearby - I mean about stuff that you don’t want him to hear. Include him as much as possible. But don’t risk him hearing bits - but not all - then his mind will fill in blanks - and lead to more worry for him.
KWIM??

Hope it makes more sense now?
Poss. xxx

Oh Possum — it’s been such a rough couple of days, and I know you mean so so well. And I love you.

But I have to say that did upset me. Yow.

I’m so so sorry Judy. That wasn’t what I wanted to do.
Shit.
Sorry.
Poss. xx

Possum, my friend.

Trust me, I know it’s not what you wanted to do. And you haven’t been around the past few weeks to see the evolution of my finding out.

I haven’t discussed Nate much except his reaction to hearing my news, but he’s in my thoughts and weighs so very heavy on my heart. But I have to try to, as Kim says, stay in the light. I have to do that for me; I have to do that for him too.

One thing that I want to say overall, that I would love to say to the public as a whole is that another person’s story isn’t my story. Even if they’re diagnosed with the same thing. One of my best friends — another friend of hers has the same kind of breast cancer that I do and her friend isn’t doing well and I see the fear in C.’s eye and I cringe when C. asks me, “Are they sure?” and I have to tell her, “Yes, they’re sure,” so I said to her, “you know, your friend’s story isn’t my story.

I am going to fight this. I am praying, I have tons of other people praying for me. There’s a Complementary Therapies Center here at one of the hospitals that my oncologist started that I’m going to take advantage of. I’m going to hit it with traditional and alternative medicine. Whatever I can think of that won’t harm me.

I know you wrote that out of your experience and your fears.

But you know, we do talk to Nate. We recently told him and he’s now asking to talk about it with us each night. We let him ask as many questions as he needs to. And we’ll work on it with Dr. Smart Cookie.

Getting well and making sure Nate is taken care of in the midst of all of this are my biggest concerns.

Love you, Poss. I need you on my side too, and I know you are. Big *hugs*

I am not a doctor but I have worked in the field of child development for more than 25 years. I have to say that you should do what your heart tells you to do: If your son doesn’t want you to leave, don’t. If he wants you, go to him. You can fix the discipline part later. His anger is over not having the person he loves most near him. If only you will do, then go to him and don’t feel bad about it.

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