Brookside Bambino and Baldness

As you know, The HOTY (Husband of the Year) and I have a 4 3/4 daughter (who is soon to be 5!).

This 5th Birthday is a biggie, she tells me, because it will be “magnificent” to be 5.  Why?, I ask. “Because I will have lots of responsibilities, like helping littler kids and walking Buzz and learning lots of new things.” Yummy.

From the time of the FBC diagnosis, I/we have had open lines of communication (well, except for the F-Bomb part!) with 4 3/4.  We have talked with her openly and honestly in developmentally appropriate ways about what FBC (minus the F) is and all it would entail (though at times, I had no idea how rotten I would really feel, but that’s another subject).

There are multiple phases of the FBC process, beginning with the diagnosis. As you may recall, from the moment of telling 4 3/4 about the diagnosis, two of the most important things that we have emphasized (that are the most relevant to her developmental age) are:

1. Mommy’s breast cancer is not contagious.
2. No one caused the breast cancer.

Fortunately, she has these down pat.  She sailed through my double mastectomy and reconstruction, talking openly and asking lots of questions. We have watched boatloads of “Silver Lining Movies” in bed (to be physically close, but not too close).

Now, that we are into the next phase of treatment, chemotherapy, we have a whole new cadre of discussion topics. I am incredibly fortunate because, as a pediatric nurse and social worker, talking with children about illness is something that comes naturally to me (SL). Though, talking with my own daughter has certainly put more of an emotional strain on the dialogue process (GULP!).  However, never for a moment have I let my feelings of sadness or nervousness impede our dialogue with 4 3/4.

Honest, forthright and developmentally appropriate communication with children is of utmost importance.  I simply cannot overstate this fact.  Inclusion in the diagnosis, treatment and healing process is paramount in a child’s ability to cope with a disease that impacts the entire family.

We spent a lot (as in A LOT) of time preparing her for the chemotherapy phase, including hair loss and other side effects. As with our discussions about the diagnosis and surgery, our choice of words and tone of voice set the stage for 4 3/4’s reactions.

For example, after I had my port-a-cath (the catheter through which the intravenous chemotherapy is delivered) placed, I calmly made a point of showing it to her.  She wasn’t overly impressed (or grossed out), but she was aware, which was the most important part.

Next up:  chemotherapy side effects, including hair loss, fatigue, nausea, crankiness…and well, you know the rest. The most effective way we’ve begun (and continued) dialogue with her is through books.

Reading is one of 4 3/4’s favorite activities, so over the past few months, we have read gobs of books about cancer, surgery and chemotherapy. The pickle with a lot of the books on the market is that they tend to lump everything (e.g., cancer diagnosis, surgery, chemotherapy and radiation) together.

Lumping all of the information together is a pickle for a couple of reasons:

1. Every FBC diagnosis does not automatically come with surgery, chemotherapy and radiation. Additionally, some people have chemo before surgery or vice versa. So, to automatically talk about everything, all at one time can be overwhelming, confusing and possibly even inaccurate.
2. Children 4 3/4’s age can only digest certain amounts of information at a time; BUT not finishing a book is unacceptable (at least in our house).  Get it? So, we found ourselves editing certain books.  For example, I don’t yet know whether or not I’ll have to have radiation, so in the books that discuss radiation right after surgery, we make modifications.  If I had my druthers, there would be separate books on each topic (e.g., diagnosis, surgery, chemotherapy, and radiation) so that parents and other adults could deal with one subject at a time.

All that said, using books is a fabulous way to incite discussion about FBC (a/k/a “bibliotherapy”).  Just great!  The other thing that is so great about bibliotherapy is that it gives children a sense of control.  In other words, 4 3/4 can pick what she wants to read and when.  …and she loves that!  Some of the books we use are:

After we talked with 4 3/4 about the side effects, some of her responses were:

I won’t remember who you are without your hair.

I calmly said that I would still have my ears (and had her touch my ears), my nose, my eyes, my mouth, etc.  Then I asked her if I still had all of my other body parts whether she would remember me.  Then she laughed and said, “Of course!”

I’m worried about your breast cancer cells.

I acknowledged this worry.  It’s so important to recognize feelings and not dismiss them. I told her that the good news is that when my hair falls out and I don’t feel good,  it means that the chemotherapy is working to get rid of the breast cancer cells.  This, we decided together, is a good thing and helps take some of the worry away.

When are you going to feel better?

I told her that it would take a long time but that by the summertime, I will hopefully be feeling back to myself and have lots of energy to play and swim and do all of the things that we love to do.  I assured her, though, that I will be here and will do as much as I can as often as I can.

Now that I am officially BALD-BALD-BALD,  we talk a lot on our nurturing nature walks (SL).

Here is some of her  feedback:

I really like your wig, Momma and your scarves are pretty, too.

Having a semi-bald head with stubble can produce an itchy situation.  (Ohhhhh, the things FBC is teaching me!)  So, when my bald head needs air, I give it air.  I don’t make a big deal about it and walk around the house comfortably without my head covered. Tonight before bed, I told 4 3/4 that my head was itchy.  She asked if she could scratch it.  Sure, I said.  I started to take my scarf off and 4 3/4 said that she wanted to rub my head with the scarf on.  Fine with me.  I was thrilled that she wanted to rub my head…that she wanted to be engaged.  I showed her how to do it and I must say that she is a master scratcher (SL)!

Cancer is complicated. You look like a baby, but still like my Mommy.

I asked her what complicated means.  She said, “complicated means that there is a lot to think about.”  Right on.  She went on to describe how babies have bald heads, so I kind of look like a baby, but I still look like myself.  I asked her how she felt about it and she said “I feel fine.”  I’ll take fine (but will definitely keep asking the question!).

I wish your cancer cells would just go away.

Me too, 4 3/4.  Me too.