Monday, March 25, 2013

"MY PARENT HAS CANCER AND IT **REALLY** SUCKS"

It's a true statement.  I'm a grown woman and I can make that statement as easily as the teen who wrote the book. Literally.

As a mom, I do everything I can to shield my kids from harm.  (I'm guessing my mom passed THAT gene to me.)  I can still hear my mom's voice.  Circa July, 2006.  We were in the exam room waiting for the doctor.  The nurse mistakenly said something thinking the doctor already called me.  She thought I knew.  I didn't.  My mom's words, "I wish there were a way for me to do this for you."

I was an adult.  I had a daughter in college, away at college, far enough away that flying was the required method of transportation.  Although she was insulated from much of the day to day living in Cancerland, I know it was on her mind and from recent comments, I know it's still on her mind.  My niece is in her teens.  She went on emotional overload when she learned that my mom is being treated for cancer again.  I don't know what is running through her head.  Is she remembering the amount of time it took for my sister, her mom, to recover from surgery?  Is she afraid for her grandmother?  Her mom?  Herself??

Cancer takes its toll on everyone.  As the gap between now and the days of active treatment widens, I can look through the cancer prism using the eyes of my loved ones.  Their need for support, sometimes minimized, often unmet can not be overstated.  When I was first diagnosed, one of my friends came for a visit armed with books.  One of them was for my husband.  It's still on a small bookcase behind his desk.  Written by Marc Silver, Breast Cancer Husband provides stellar, solid suggestions for the spouses.

Recently, Marc co-authored a book with one of his daughters.  Maya and Marc have given me a peek into the challenges that I did not have to face.  Parenting a teen, OR being a teen can be difficult enough--add in a mom with breast cancer and ......  well, I'll let Marc and Maya speak for themselves.

I've turned over today's blog so they can give us all a little glimpse into what their lives were like when Breast Cancer turned their home into CancerLand.  And then, some suggestions to perhaps prevent the picture Maya paints when she says the family "put our heads down......until it was over ...... (so) we could all come up for air."


My Parent Has Cancer: Now Keep Talking!

Marc: My daughter Maya is on the sofa watching TV. I’m about to run out into the cold February night to pick up some ginger candies for my wife, Marsha, who’s feeling a bit unsettled after her chemotherapy treatment a few days before.
“Heading out to get something for mom, be right back,” I call to my 15-year-old daughter.
“How is she doing?” asks Maya. 
In my head I think: “But you could ask her yourself because mom is upstairs in the very same house in which you are watching TV!” But I bite my tongue because I don’t want to rag on Maya.

Maya: I may as well have handed my dad a postcard, reading, "Hey Mom! How have you been? Wish you were here (on the couch)!" and asked him to deliver it to her bedroom upstairs, where I didn't really want to go. I am ashamed to admit that I really didn't like being in my mom's presence when she was that sick.  

When my mom was going through treatment for breast cancer, communication in our family did have its weaker moments. We didn't all talk as a family very often. I didn't know that my dad was struggling. He never asked how Daniela (my sister) or I were doing. More or less, we all put our heads down and scraped our feet through the experience until it was over and we could all come up for air. 

Marc: Now that my daughter and I have written My Parent Has Cancer and It Really Sucks, a book on teens facing a parent’s cancer, we’ve learned that there are a lot of ways to keep up, depending on the family’s style.

1.       The family meeting. Maybe you have a tradition of family meetings already. Then add a section or an extra meeting called “putting cancer in its place,” suggests psychiatrist Karen Weihs, Medical Director for Supportive Care at the University of Arizona Cancer Center in Tucson. Here’s what’s up with the cancer treatment – and what’s up with you? Any questions? Anything you’d like to share?
2.       The car. If you are the designated driver to get your teen to school or the mall or a friend’s house, use the car as a vehicle for communication as well. No need to look each other in the eyes. Just talk about what’s up with cancer – and also what’s up in the world of teenagers. Your kids may still want to talk to you about the latest boyfriend/girlfriend scandal at school – and it’s great to talk about things other than cancer during this period. In Planet Teenager, life does go on.
3.       The journal. Keep a notebook in a conspicuous place. Mom and/or dad, write down the latest cancer developments. Encourage the kids to write their questions as well. And then you can answer the questions.
4.       The post-it note. Maybe your teen is a minimalist. A post-it note in a prominent place – the bathroom mirror, the fridge – can help keep the conversation going. It might be as simple as: “Dad has chemo today, home around 6 p.m., can you order pizza for dinner?”
5.       Respect your teen’s communication style. Not every teen is a talker. If your kid isn’t up for a conversation, don’t force it. On the other hand, don’t assume that the lack of conversation means you don’t need to keep the family up-to-date on cancer bulletins. The mental health experts we interviewed suggest telling your kids, in a straightforward way, what’s going on with the treatment. And then follow up the next day or so: Did we give you too much info? Was it helpful? Is there anything more you want to know?


You can read a bit about Mark and Maya on their website.  Mom and wife, Marsha was diagnosed with triple negative breast cancer in 2001.  Tumors were found in both of her breasts.  Today, she is in good health.  

8 comments:

  1. So tired of all these battles! I am sending you both love, peace and good vibes xoxox from Upstate Ann Marie

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  2. Three months after I was dx with cancer, my mom was too; then three months later we learned my Dad's had mets to his lungs. That was SO HARD!

    Before we knew there was nothing that could be done for my dad, I told my mom we could look into cyberknife for him. She got her hopes up till I told her they'd probably have to travel 100 miles one way (among other challenges) Neither of them drove and her spirits deflated again. She said "Oh, we can't do that." I wanted so badly for him that I told her I'd finish up treatments where they lived (450 miles away) so I could get him there. He wasn't a candidate for cyberknife, so wouldn't have mattered even if they would let me do this for them.

    But through all my blabbering I wanted to make the point, yes, it's hard for the kids. Even if the kids are grown ups! Most definitely if they are little. Marc's advice on keeping communication open is good ....

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  3. My kids were so young when I was sick - Cecilia was only 18 months. They really didn't know what was going on. However, like Rachel, I know how hard it was when my dad was diagnosed. Communication was lousy at best. I spent a lot of time on the road between Baltimore and Syracuse, because whenever I asked Mom anything, I was told "he's fine." Meanwhile, my sisters portrayed a very different picture, so the only way I could ever get a straight story was to make the drive up there. It's hard to watch a parent suffer, and I imagine even worse when you're a teen and trying to figure out what life is all about. I think Mark and Maya's book sounds wonderful - kudos to them for doing this!!!!

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  4. AnneMarie,
    First of all, I am grateful your mom's PET results brought encouraging news. I appreciate the glimpse into Marc and Maya's book. It certainly offers honest and practical points. That's the thing about making a trip to Cancerland--it always stays on the map after that, even if we aren't always living there. Thanks!

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  5. dear annemarie,

    how gracious and how thoughtful this post is as your own family stuggles with breast cancer and how to include sons and daughters in the care circle. i would just like to add that often a caregiver parent is completely overwhelmed by how different the kids are handling things. once i had a cancer patient, a mom, and she had 2 daughters - 14 yr old, and a 16 year old. and their dad really suffered such confusion and sometimes anger when he observed that the 16 yr.old seemed oblivious, never entered her mom's room, spent as much time as possible with friends at the mall, and stayed on the computer or phone much of the time when home. the 14 yr old was taking on a lot of the hands-on care of mom and spent time before school and after to do all she could to make mom comfortable,helped feed her, bathe her, and spent hours at the bedside, holding mom's hand until she fell asleep. she was becoming increasingly critical of her older sister for her seemingly indifferent attitude. the hospice social worker and i teamed up to provide insight and stratagies to help both dad and his yongest daughter undersrtand that avoidance was a coping mechanism, just as attentiveness was the one used by the 14 yr.old. and that most often, it is overwhelming feelings of helplessness and fear of the future that some teens (and older childern as well) employ denial and abvoidance to protect themselves. we had a joint dicussion with the girls and the dad, and ironed out all the animosity by talking about specific things the 16 yr old could do to bring comfort and togetherness with mom - reading aloud to her, making a photoboard for her mom to have nearby, writing a note of love to leave on her breakfast tray. we spoke privately with the older girl, a conversation that revealed she felt lost, confused, and useless to both her mom and her dad - she simply did not know what to say to them; and that she felt inadequate when she compared herself to her younger sister. we helped her with that and she responded very well, and ended up partnering with her sister and father. on the next visit, we were amazed at how they all felt so much better. no more resentment or anger; dad had done a great job telling both daughters that they were his greatest comfort - lots of hugs, kisses, and holding each other close - and the girls became much more attentive to their father, as well. we could tell that mom's restlessness and physical demeanor was now one that reflected a peacefulness, and such pride in her family. it was a wonderful experience to work with the family, and to help each individual come into their own special gifts to alleviate the former feellings of stress and strife that was sad and very exhausting. i think marc and maya did a wonderful service for so many who struggle to find how best to utilize familial talents and gifts to contribute during a crisis of being so impacted by a home invaded by cancer. thanks for letting us know about them, annemarie. there are many, many families who will benefit from their experience.

    love to you, your mom, and your family, XOXO

    karen, TC

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  6. Sounds like some very good suggestions for keeping communication in check. Great post, I think we could use this for brother/sisters, partners, parents, ... basically everyone who struggles when a loved one gets sick. ~Catherine

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  7. I'm writing a blanket thank you to everyone who commented here, and I PROMISE I'm not playing favorites, but Karen... thank you for sharing your experience with those young girls. Your comment adds so much depth to this conversation and I appreciate that you shared it here....

    Love to all... and again, thanks to all....

    Hugs... also to ALL...

    AM

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