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 is written by a loving husband about life after his wife's breast cancer diagnosis.

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 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.

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?

Monday, April 26, 2010

Parenting through Treatment

Here is a post I wrote about the challenges of parenting through treatment. It originally appeared on my website,

I got a lot of advice when I was first diagnosed with cancer. One suggestion I heard often was to let things go and take care of myself. My job, my projects, my chores would wait.

But, I wondered, what about my children? They will not or cannot wait. This is their childhood. They need me now. How is that supposed to work?

Even before my treatment began, the conundrum of simultaneously letting go and parenting came up. A few days before I started chemotherapy, my children came down with the swine flu. At the advice of an oncological social worker, we had not yet told them about my diagnosis or upcoming treatment. We were waiting until the last possible moment so as not to make them anxious. Then my youngest contracted a fever and what the pediatrician confirmed to be unmistakable H1N1 symptoms. We could no longer wait to sit them down and have The Talk. We explained my diagnosis and why I was going to quarantine myself at somebody else’s house. This was not an easy conversation and we all shed many tears. A shadow hung over our discussion. Almost exactly two years earlier, my step-brother, their uncle, had died from cancer, so the disease was very real and scary to them. The worst part of this conversation was that I did not get to hug them after we broke the news. It was the beginning of me having to deny my strongest maternal instincts in the interest of my own well-being and survival.

One by one, the three children got the virus. I stayed at an acquaintance’s house for the next ten days. A kind family with a spare room had heard of our difficult situation and offered to take me in. We had only lived here for four months prior to my diagnosis, so we had not yet made close friends. A high school chum, whom I hadn’t seen in twenty years, was moved by our situation and with only a couple of days’ notice, she flew out to help. She stayed with me and this wonderful family, accompanying me at my first chemo and my port placement surgery. Amazingly, this motley bunch of virtual strangers-turned-friends managed to support me with love and compassion as I started my cancer treatment. This wild journey, it seemed, would not just involve chaos and heartbreak; it would be cushioned by miraculous generosity and love.

When I returned home, my son, who was two years old, clung to me. His insecurity seemed amplified by my strange reemergence. In my ten-day absence, I had already been transformed. My usual peppy energy level had sunk notably and my appearance had altered. Although my doctor had told me it would take several weeks for my hair to fall out, my sensitivity to the drugs was high. My hair began to fall out after one week. After a clump came out in my brush and made me cry, my husband came by the house where I was staying to shear my curly locks.

My son wanted to be with me and I with him. I felt guilty for my limitations. I had to figure out how to parent from my bed. We read together and we talked. We developed a repertoire of games I can play with my low energy while resting. He has become so accustomed to them after my four months of treatment that on the days when I have been up and about, he sometimes becomes indignant: “But I want to go snuggle in your bed!”

Even when I am weakened, nauseous, and fatigued, I cannot stop being my children’s mother. I cannot stop loving them, caring about them, fretting about them, working to support their emerging and precious selves. But, as I said, my instincts are often denied. I really have had to let so many things go. I can no longer look after my daydreamy eldest’s organization of her schoolwork. I have consulted with her teacher, and we are lowering our original goals on that issue for this year and are focusing on her learning. She may not get every assignment turned in but she is engaging in and understanding the curriculum. I have given up trying to reorganize my middle child’s bureau drawers. I can’t participate or volunteer at the kids’ school. Even if I had the energy, it is a virus swamp and no place for the immunocompromised. The things I normally manage, that are part of my normal rhythm as a mother, have to fall by the wayside.

Although my parenting has been restricted, I can still check in with my children. Thankfully, they tell me what is on their mind. It pains me that I can’t engage with their concerns and fully protect them from the horror of what is happening to me. They see me and know that I suffer. I fantasize about having a superpower that would allow me to freeze time for them so that I could go off and get better without them having to witness the pain of treatment. In this daydream, I would return as basically my same self and we could resume our family life without this nightmarish interruption.

Early on, we bought them a book about a mother with cancer, a story told at a level that even my youngest could understand. He asked us to read it repeatedly for the first couple of months of my treatment. Two months later, when the book had lost its hold on him, he turned to me with a serious look on his face and said, almost accusing, “In the book, Sammy’s mother gets better faster than you.” My heart broke for what felt like the millionth time. A ten-minute story is so much easier to sit through than a year and a half of treatment. I wish, like him, we could just turn the page and make the time pass.

My middle child, the one who has been told repeatedly in her seven years of life that she looks just like me, expressed the most distress about my hair loss. The changes in my appearance that threatened my own identity also seemed to threaten hers. She did not want me to show my bald head in front of her friends. She urged me to get a wig. When she learned about my surgery, she asked if I would look like a man without breasts. My eldest, who is almost ten, confided her fears about her own body: she was afraid to get breasts because they might get cancer too.

But even snuggling and talking have their limits. The treatment makes me hypersensitive at times, making noise or multiple simultaneous conversations difficult to tolerate. My children are learning to have more slow and measured conversations with me, but, of course, this is not natural. The cognitive impairment of chemotherapy makes me an unreliable listener. “Mommy, don’t you remember?” is a phrase I have heard that more in the last four months than in my prior ten years of motherhood, as I, in defiance of my usual acute memory, once again forget a friend’s name, a birthday party, or a project that somebody wanted to do.

An undeniable anxiety pervades our household, bringing our reactivity up in a multitude of circumstances. Our capacity is down, so my husband and I work to push things back to make space for the kids’ needs and concerns. We worked out with the girls’ school that they do not receive homework one night a week while we attend a family support group. In general, we have abandoned some of our usual focus on their schoolwork. The vulnerability of our situation makes our emotions raw. When my son wandered off for ten minutes at the science museum, our imaginations could believe the worst-case scenario more vividly than we normally would. We know too well that the bad stuff in life is not just what happens to other people.

What, I often wonder, is my goal as I parent through this time? How am I to help the children make sense of this experience? The best I can come up with is that it is my obligation to listen and be as honest and hopeful as I can. I learned, in the twenty months my brother was fighting this disease, that there is always something to hope for no matter what course the cancer takes. With my brother, I started by hoping for a cure and ended with the wish, once it was inevitable, that his death be peaceful and that he leave this world feeling the power of the love he had created while he was in it.

So this is an opportunity to teach them, in a vivid way, the importance of love, generosity, and hope. I have marveled with them at the kindness of the people who took me in and cared for me when our family had its initial crisis. I try to help them see the weight that is lifted as people bring us meals or visit and help with chores. I hope that, with our guidance, they can see how these acts of lovingkindness are fundamental to a community and that they will be eager to give to others when the opportunity arises. I hope they see that my appearance can change, but the love that I have for them never does. My love for them endures even in these circumstances, even when I am being beaten down by chemo side effects and the drugs that are meant to alleviate them. I hope that they learn about the importance of us sticking together as a family, as they watch their dad push himself to the limits to keep everyone going. I hope they learn how to live life with joy, because only if you have been in a difficult place filled with grief do you learn the gift that is health and normalcy to the point where it can bring you true contentment and happiness.

ChemoPadres Debuts!

The number of young adults diagnosed with cancer is growing. We are often advised to "let go" of things while we get better. If we are parents, this mandate approaches the ridiculous. This is our children's childhood. How can we let go for a year or more of their lives?

The goal of this blog is to aggregate practical and emotional resources to support the ChemoPadres out there. Together, we can pool our wisdom and help each other make it through.

Please send me any questions you think are worth discussing. Any references or agencies that have been useful for you or your family. Caregiving parent support... It's what ChemoPadres is about.

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