Friday, May 14, 2010

Alongside My Wife

So much of the time, people in treatment are encouraged to focus on fighting and staying positive. But there is a possibility that we won't prevail in our fights. It's our worst nightmare, of course, especially when we are leaving children behind.

This moving article from curetoday.com is written by a loving husband about life after his wife's breast cancer diagnosis.


http://curetoday.com/index.cfm/fuseaction/article.show/id/2/article_id/1419

Monday, May 10, 2010

Stepping Back In

I am fortunate to say that my husband and I have always been a good team when it comes to parenting. We have very similar values and will always back each other's decisions, even if we don't see completely eye-to-eye. We have enough trust in one another that we know we can iron out disagreements later, out of the presence of the kids, to present a consistent front in our work as parents.

At the same time, any of our kids will tell you that Mommy and Daddy are different. They may have told you this already, in that frank way that children do. They'll let you know, for instance, that if you want to do something messy, go to Mommy. If you want to do something silly, go to Daddy. Mommy also is much stricter with bedtime.

When I first had to step aside from parenting during my cancer treatment, this was one of the hardest things for me to let go. It's not that my husband doesn't do a good job with bedtime. In fact, my kids often prefer his bedtime rituals. He knows all the lyrics of so many songs, they can say, "Daddy, sing me a song about rain," and he will come up with three songs that he knows all the words to. If I am lucky I can think of one, and then maybe some others to which I can mumble and partially sing the chorus. It's just that when I say that the lights are out at 7:30, I am pretty good at making that happen within a five minute window.

To say that my husband, as my primary caretaker and as my children's, has had a lot on his plate these past six months is an understatement. My friends have visited and been amazed at how well he has juggled his load. He has been underslept, waking up first thing in the morning to get them off to school, working his job, caring for me, and then doing the bedtime routine by himself except for the few times friends have visited who knew how to step in and help. The post-bedtime evenings are filled with all the chores he hasn't been able to get to during the day.

In this time I have had between surgery and radiation, my energy has been creeping back. All the pent up frustration from being sidelined has probably given me greater zeal with my parenting in general, but on this one thing that wasn't being done in my way, last night, that zeal may have turned a bit fanatical.

We had been gardening all day, and my husband stayed outside later then the rest of us, finishing things up. I had fed the two youngest children and had already started their bedtime routine, with my eye on a 7:30 lights out for the youngest and 7:45 for my middle one. I was on track when he came in and realized that he hadn't kissed them goodnight. Back in our old life, this may have been simple enough: it's Mom's turn to put the kids to bed, Dad will kiss you goodnight, and we will go on. However, Daddy's been the bedtime guy for the past 6 months. A simple kiss on the cheek or forehead doesn't feel like enough to him or the kids. He needs to check in with me about the routine that has become his sole property; the children want things from him that have become their source of comfort. My timeline is derailed and I feel displaced.

I chase him out of the room, perhaps too harshly. I don't understand, in that moment, what is happening. I am short with him, want him to leave. Of course, the frustration is greater than me missing my goal of getting the children to bed punctually. It's the loss I feel, among so many losses of this disease, of losing my place, of losing my role in my family.

After the kids are in bed, we talk. I apologize for snapping. I agree that he has done a good job with this all of these months. But it is hard to express what Doing Bedtime symbolizes for me in my sense of myself as Mom. I have lost hair, breasts, energy, time and so much more during this treatment. That is one thing I feel I cannot lose.

Friday, April 30, 2010

Good Grief!

Parents without cancer are often at a loss about how to talk to those of us with cancer. We are living one of their worst nightmares. Writer Jen Singer wrote this piece after her diagnosis with non-Hodgkins lymphoma. She is a suburban mom of two boys who talk to her through the bathroom door. She was the blogger behind Good Housekeeping's Good Grief! Mom of Tweens blog and the creator of mommasaid.net. You can find her on twitter @JenSinger. Reprinted with permission from Jen Singer.



"What do you say to a 40-year-old mom with cancer?" an old friend asked me in an e-mail message the other day. I know she's had trouble dealing with my recent diagnosis of non-Hodgkin's lymphoma, but I was disheartened to find out that she's too scared to even talk to me. After all, I'm still the same old Jen, just bald. Worse though, I feel guilty that I've made her heartsick when even I don't feel that way most of the time.

Her husband, on the other hand, isn't having the same problem. That's why he's one of a dozen contestants in my Wacky Wig Contest, a competition to see who can make me, as he put it, "look as ridiculous as possible during your greatest time of need."

I realize that most people don't normally deal with cancer by taking pictures of themselves in blue Marge Simpson wigs and posting them on the Internet for public viewing, let alone voting, but that's how I've chosen to deal with this tough time. I want to keep as much fun and joy in my life as possible, but how can I give my friend permission to join me when she doesn't even know how to talk to me anymore?

Perhaps she's afraid she'll say something stupid. Take heart, buddy: Someone has beaten you to it. A phlebotomist, who was using a tiny infant needle to draw my blood because that's all that would work on my chemo-battered veins, actually said to me through her chewing gum, "Non-Hodgkin's lymphoma? That's the bad cancer, right?"

You mean there's a "good cancer?" Can I change my order? Oh, that's right, I didn't sign up for this. That's got to be why my old friend has so much anxiety about what to say to me now. Neither of us saw this coming.

It's not normal to be slapped in the face with mortality just months after reaching the unofficial start of middle age. Forty is supposed to be the new 20, not 80. When I got my diagnosis, I didn't know what to say, either. Mostly, I just cried and held my husband's hand.

But since then, I've learned to find the funny and the wonderful in my life's most harrowing time, and I'd like to share that with as many people as possible. I want to make people happy, not heartsick, because, really, that's how I feel most of the time.

So, what do you say to a 40-year-old mom with cancer, dear old friend? The same thing you said when my first baby was born prematurely. Or when I had to put down my sweet 14-year-old cat. Or when I endured several surgeries for endometriosis. Or when my beloved grandmother passed away just shy of her 95th birthday.

You simply say, "I'm here for you." That's all. And the wig? That's optional.

Thursday, April 29, 2010

Women with Cancer: Your Cancer, Your Kids. What's a Mom to Say?

Women with Cancer: Your Cancer, Your Kids. What's a Mom to Say?

Another great post on talking to kids about cancer from Jody Schroeder's Women With Cancer blog.

Talking and Checking-In

This post was contributed by a colon-cancer survivor and father to two girls. They were pre-school and early elementary age during his diagnosis and treatment.

Choosing how you say what you need to say is as important as what you say to kids about a parent's cancer. I sought counseling on these points, discussed the issues with my wife, and then we had the discussions with our children. Key issues were:

1) Giving enough information so the children understood what was happening and what was going to happen. For us this went something like: "I have an illness called cancer, and need to take strong medicine which will make me tired...."

2) Be open to questions, let them know they can ask any question anytime. Pause so kids can think of questions or know you're open to them. When asked "Is Dad going to die from this?" our answer was "We don't think so. We're doing everything we can to help me get healthy, and it's probably going to take a long time for me to get well. We have great doctors and will do our best." Our idea was to not make a false promise of guaranteed survival, but instead to show our confidence in a realistic way.

3) Reassure kids that they are safe and will continue their normal routines as much as possible. "Your going to keep going to preschool and school and playing with friends..."

4) Check in often (a couple times a week at least was right for us) with the kids with open ended questions or invitations for them to share. "how are you feeling about my cancer? etc." One time my then 4 year old replied, after a long pause: "Dad, I know how you got cancer. You got cancer from the cat. When we were at grampa's house because I heard you sneezing when you were with the cat." I helped clear that up, the point is that she wouldn't have shared that unless there was a clear opportunity for that. Also, kids imaginations will fill in what you don't tell them, often in ways that it's better to clear up.

There are many good resources that address these points, including books such as "When a Parent Has Cancer."

Wednesday, April 28, 2010

Video Journals

For my youngest child, I have done a few entries in what I think of as a video journal. I know a lot of this treatment is taking place at a time when his memories will eventually be vague. Yet my cancer is a major event in his childhood.

Here is an entry in our video journal that we made during my chemotherapy. I have a few goals in doing this. As I said, I want to document this time in a way he can access now and in the future. I want him to learn about what is going on at a level he can take in. Also, you'll notice how I have him explain what is going on, giving him some mastery over it.

video

As you can tell, my son loves making these videos. He loves to watch these videos over and over again. As time has passed, he has seen the changes in me. I now have hair. I am no longer in bed all the time. Young children have a different sense of time than adults do, so video helps give them a way to see how things are changing.

What do you do to help your children understand what you are going through?

Tuesday, April 27, 2010

Is Mommy Going to Die?

I translated this posting one of my favorite breast cancer blogs, written by French blogger and survivor Catherine Cerisey. You can read her the original post on her blog or follow her on Twitter at @cathcerisey. She also works on the team for the Maison du Cancer.

This is the question that every woman dreads hearing when she shares the news of her cancer. However, if you have children, the question comes up quickly. How do you tell them about the disease, explain something that is so terribly painful for us as adults? How about your own fear? How do you reassure them without communicating your own fears? How do you talk about things that we do not always know?

Some parents still believe that children won't suffer from what they don't know. A woman might get caught up in the guilt of not being able to care for her children temporarily, the anguish of not being there for them until adulthood. You may simply not want to cause them pain. But when cancer comes to your family, the anxiety is felt by the children, whatever their ages.

Your anxiety may echo in the children. For them, it might come out as feelings of abandonment, guilt, aggression, fear, grief ... And children's reactions will differ according to their age: a pre-verbal baby will feel the a mother’s stress, expressing anguish through agitation, outbursts of tears, or sleeping problems. Older children will show their anguish through games, drawings, or academic difficulties. Adolescents might engage in the excesses, insults and risky behavior of their peers, or, conversely, silence and depression.

All of the sudden, a mother may stop working and disappear for several days in the hospital, or, in the case of chemotherapy, suffer hair loss, feel tired or sick .... Children might lose their bearings, imagining that things are worse than they really are. They may feel guilty, believing they are the subject of secret meetings held by the adults behind their back. On the other hand, if they are confronted with the worst case, they should be prepared gently, taking the time, proceeding in stages. Without including others, outside people that do not support you might announce something in a brutal way.

Today, child psychologists and and psychiatrists agree: It is impossible to hide the situation.

That's fine, but how do you tell them?

At the most basic level, you must find the right moment, perhaps when the father or partner is there, or someone in the family who can speak for the mother if it gets too painful. Perhaps it could be the family doctor.

Of course, we do not speak the same way to a pre-verbal child, a young child or adolescent. We must assess what they can understand, to provide information tailored to their ages. For example we can say “shot” rather than “chemotherapy”; “x-rays” instead of “radiation therapy”, “doctor” instead of “oncologist.” And you can anticipate that hair loss can be terribly distressing for a child.

You must also know and accept your own limitations, answering "I do not know" to questions, to give an appropriate response after you ask the doctors or nurses yourself. Sometimes you have to pass the baton to the psychologists, teachers, sports teachers, school counselors who will have to handle situations that are outside your notice.

Finally, what about facing the possibility of death? Perhaps remind them, reassure them him that the doctors are doing everything possible to help you get better. If they have experienced cancer before, you can explain that not all cancers are fatal, as research progresses, and the disease a grandfather died of a few years ago could be cured now. Finding the words to say something that is feared is always difficult and in these cases even more so; again, the help of professionals can be invaluable.

Major cancer centers often have established consultations with social workers or discussion groups to help parents to talk about cancer with their children. Books are available to help explain the disease and its consequences with simple words.

You shouldn’t hesitate to use as much support as you need to get through this emotionally difficult time.

How did you tell your children about your cancer?

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