Apr072010

Sesame Street: When Families Grieve

By Michelle | April 7, 2010 | Posted in Parenting with Cancer, Talking to Kids about cancer | Comments (0)

I love Sesame Street. I still know the songs that I learned while watching it many years ago. Sesame Street teaches children much more than letters and Spanish though. After all, life isn’t always  a “Ladybug Picnic”. Sesame Street has always engaged in difficult discussions, engaging children in their classic age appropriate ways. Soon, Sesame Workshop will tackle the tough topic of the death of a parent.

The show, which will air during primetime so that families can view together, is a part of the Talk, Listen, Connect project. It was originally launched to support the special needs of military families. Katie Couric will host “When Families Grieve” when it airs on April 14 at 8:00 EST (on PBS of course) The show will feature families who have lost loved ones as well as Elmo and his family discussing the death of a beloved uncle. The program will help foster communication and provide coping ideas and strategies. There will also be supporting materials available after the program through the Sesame Street website: www.sesamestreet.org/grief.

If you head to that website now, you can preview some of the show’s content. Clips are also available on www.youtube.com. The scenes are poignant as they handle a variety of  the challenges that surround explaining death to a child, including the permanency of the loss.

Sesame Street Workshop also handles a serious health diagnosis in “Here For You”. The content surrounds a critically ill child but many of the emotions and learnings may also be appropriate for other families facing ill loved ones. The DVD was distributed to hospitals and pediatric care centers so you may want to check with your local facilities, child life specialists or medical social workers for more info. You can also visit the Sesame Workshop webpage at www.sesameworkshop.org/.

By Michelle | Posted in Parenting with Cancer, Talking to Kids about cancer | Comments (0)
Mar202010

Outpatient Radioactive Iodine Therapy

By Michelle | March 20, 2010 | Posted in Cancer Diagnosis and Treatment | Comments (0)

This week, Rep. Edward Markey of Massachusetts, released a report concerning the potential radiation risks that a radioactively treated thyroid cancer patient might pose to others. The Nuclear Regulatory Commission apparently deviated from the global standards governing hospitalization of patients who have received radioactive iodine in 1997. USA Today reported on March 18 that the NRC moved at that time to allow outpatient treatment of thyroid cancer patients. The concern surrounding this outpatient situation is that patients will sometimes choose to transition between hospital and home in a hotel where they could possibly put other guests at risk.

As always, I never pretend to be an expert about important topics such as this. A little bit of curiosity and research led me to the following interesting tidbits:

*Radioactive iodine is removed from the human body through bodily fluids: urine, sweat, saliva and stool.

*During the hospitalization period of the radioactive iodine treatment; any items contaminated with these fluids will be thrown away, all staff entering the isolation room will be monitored for their exposure and personal items will be prohibited.

*Special precautions will follow the patient from discharge such as keeping all linens, clothing, towels, and dining utensils separate during use and cleaning. Patients are advised to avoid close and intimate contact (which includes the car) with other household members, especially children and pregnant women. Other tips recommend separate sleeping arrangements, extra toilet flushing, attention to hand washing and cleaning of bathroom surfaces.

Please consult your medical team regarding any risks or precautions necessary concerning the risks of your radioactive therapy on  your loved ones.

For more information, please see Rep. Edward Markey’s statement at http://markey.house.gov.

Excellent pages on radioactive iodine therapy preparation and post-treatment advice can be found on Columbia University’s New York Thyroid Center page; at www.endocrinologist.com and at the Thyroid Cancer Survivors’ Association, Inc.

By Michelle | Posted in Cancer Diagnosis and Treatment | Comments (0)
Feb082010

The Children’s Treehouse Foundation

By Michelle | February 8, 2010 | Posted in Cancer Resources | Tagged | Comments (0)

“I don’t want to alarm my children, but I don’t know want to lie to them either. How much should I tell them?”

“I think my child understands, but I don’t know. He never says anything to me about my cancer.”

“What should I answer when my daughter asks, ‘Are you going to die?’

These questions are common in families parenting through cancer. Parents frequently struggle with communicating with their children around the illness, the treatment and the range of emotions that the entire family experiences. I recently became acquainted with an organization that assists families with these concerns.

The Children’s Treehouse Foundation is the nation’s only organization providing hospital-based, cancer-focused, psychosocial intervention training and programming dedicated to improving the emotional health of children whose parents have cancer. Founded in January of 2001 in Denver, the organization has been granted 501(c) (3) status as a public charity by the Internal Revenue Service. The organization was created by Peter van Dernoot, whose wife was diagnosed with terminal lung cancer when their children were in their early teen years.

According to a brochure provided by the Foundation, the organization “envisions a world where preventing the inevitable psychosocial impact on children whose parents have cancer is taken as seriously as finding a cure for cancer itself.” The Children’s Treehouse Foundation supports these children and their families with multiple resources.

Mr. Van Dernoot has published two excellent resource books on this topic:

helping your children cope with cancer“Helping your Children Cope with Your Cancer” begins with four chapters written by professionals who provide guidance on the needs of children in families where a parent has been diagnosed with cancer. The remainder of the book is a collective of narratives from parents allowing honest insight into the impact of their diagnosis on their family. The book also allows readers to hear directly from the children themselves through their comments, essays and drawings.

Talking with my Treehouse“Talking with My Treehouse Friends About Cancer” is an activity book for children participating in the CLIMB program. This books has pages that prompt the child to express his feelings through word or pictures.

The Children’s Treehouse Foundation provides cancer centers and hospitals with professional training to enable them to launch support programs for the children whose parents have cancer so they are better able to cope in that unsettling, frightening, and stressful environment. They receive training and program manuals, a power point presentation, a DVD, and children’s activity material developed by the Foundation’sCLIMB® (Children’s Lives Include Moments of Bravery) program, funded in part by the Avon Foundation.

The family burden of dealing with cancer, and the inevitable stress, can also be significantly reduced through group support available through the The Children’s Treehouse Foundation.

The above information was posted with permission from Mr. Peter van Dernoot, founder of The Children’s Treehouse Foundation. To find more information on the organization or to obtain their books, please visit the website, www.childrenstreehousefdn.org.
By Michelle | Posted in Cancer Resources | Tagged | Comments (0)
Feb082010

Breast Cancer and Melanoma

By Michelle | February 8, 2010 | Posted in Cancer Statistics | Comments (0)

Recently learned, Interesting and Important:

Recent published data supports the link between breast cancer and melanoma. Alarmingly, the diagnosis of one of these could lead to a four fold increase in the risk of the other. According to The Skin Cancer Foundation International Advisory Council, women with a history of breast cancer have up to a 2.7 times higher risk of melanoma diagnosis. Conversely, a woman with a melanoma diagnosis faces a 1.4 times higher risk of being diagnosed with breast cancer.

Please visit skincancer.org for more information and details. Then, do a self exam, apply more sunscreen and tell someone you love to do the same.

By Michelle | Posted in Cancer Statistics | Comments (0)
Jan192010

Cancer is expensive

By Michelle | January 19, 2010 | Posted in Cancer Diagnosis and Treatment | Comments (0)

A December 2009 study from the Association of Oncology Social Work confirmed the brutal truth. The cost of a cancer diagnosis is a heavy weight to bear. They surveyed hundreds of cancer patients, their caregivers and oncology social workers. They found that over half of the patients surveyed admit that their focus on recovery is impacted by the stress of paying for that recovery.

I found a few other tidbits interesting. Like much of the cancer experience, concerns over the financial aspects keep us isolated. The survey showed that most patients agree there is economic stress and concern yet only around a third of them will seek out their oncology social worker for help. On top of that, the survey showed that many caregivers are withholding the cold hard financial facts from the patient in order to protect their loved ones from the ugly truth. This comes from a loving place, truly, but also adds to their own already hefty burden.

Here’s the silver lining….there are people who are capable of lightening both the load and the mood. Your oncology social worker can help in a multitude of ways if you only will work up the courage to ask. Another bit of hard-earned encouragement shows that patients who have to return to the cancer rodeo tend to have a better handle on the process. Turns out that if you have to wade through the muck again; you’ll know who, what and how to navigate through the insurance company system, make life easier at the pharmacy and anticipate the impact on the bank account. We’ll put this under the heading of practice makes perfect and call it good.

The topic is even more complicated when you factor in the odds of success of a given therapy. Survival and quality of life both have a price tag yet those amounts are incredibly personal and individual. It’s a sad day when finances have to enter the decision making process. Yet, it is an important discussion to have with your medical team so that all considerations are on the table. Your clinician can help you determine the relative value of your treatment choices, if necessary. It goes without saying that there is a lot on the line here. An estimated quarter of patients will exhaust their life savings during a cancer episode and too many patients are choosing to deny treatment for financial reasons. Survivorship has its own set of challenges with questionable insurance eligibility, continued surveillance and secondary diagnoses.

In the midst of it all, I know that asking for help is hard to do. Sometimes just stopping long enough to think about what kind of help you need is enough to make you lose momentum. It’s nearly always worth the time for everyone involved so reach out and have someone help you carry the load. You have to have these tough conversations. You have to find the big and small costs that can be avoided, reduced or negotiated. It’s hard to fight with money issues on your back but it is also difficult to climb up the hill of recovery against a landslide.

By Michelle | Posted in Cancer Diagnosis and Treatment | Comments (0)
Dec082009

Cancer Brain

By Michelle | December 8, 2009 | Posted in Uncategorized | Comments (0)

Cancer fog, chemo brain…whatever you want to call it, this is a real animal. It started out a little bit like a joke…”oh, so this is what they were talking about”. That is until it was still here in our house long after the chemo ended and we attempted our return to “normal”. We are not in a unique situation since the vast majority of cancer patients experience some level of cognitive effect and for many, it is a long lasting effect.

For us, it seems to present itself as memory issues. He can remember third grade but can’t exactly recall what I just told him about tomorrow’s schedule. Sometimes, it’s about finding that darn word that is right on the tip of the tongue or about remembering the details. I also tease him about “being on a loop”. He just repeats himself over and over. He asks the same questions over and over. (And then forgets the answer!)

The symptoms that my husband experiences are similar to that of other patients who have experiences cognitive effects post cancer treatment. Other ways that it might express itself could be inability to focus, difficulty concentrating or a general sense of fogginess. Multi-tasking is tough. Many patients find they just require a little more time to think or respond than they did pre-cancer. For some, these effects lead to self-esteem and identity issues that are compounded by the ability to perform at their previous level in their careers and relationships.

There seems to be more attention focused (no pun intended) on these issues lately. Thank goodness. Otherwise, the cancer community might feel completely crazy, isolated or unheard. More recently, major research trials are being done to look at the causes and implications of these cognitive effects on survivors. A recent article in September’s Journal of Cancer Survivorship acknowledges the financial and psychosocial effects of chemobrain on cancer survivors. The good (and bad) news is that there is actually scientific evidence that something is happening in the brains of cancer patients. Brain scans show a change in blood flow, brain activity, and metabolism which might explain some of the symptoms. Researchers are beginning to link increased risk of cognitive decline to particular chemo drugs. They are also realizing some of the factors that may increase the likelihood that a given patient will experience the effects. They are finding possible genetic predisposition may play a part as well as the particular drugs/dose/delivery method used. There may also be increased risk based on younger ages and particular types of cancer.  Even “chemobrain” is probably a misnomer since cancer patients who have never received chemotherapy can also experience the fog.

There is a fantastic new book, Your Brain After Chemo: A Practical Guide to Lifting the Fog and Getting Back Your Focus; written by Dan Silverman, MD, PhD and Idelle Davidson,  that I highly recommend for cancer patients, survivors and family members. Dr. Silverman is a physician and scientist who is one of the researchers working on the science behind chemo brain. Ms. Davidson is a award winning jounalist and breast cancer survivor. Together, they have written a very informative but approachable book on the topic. Please visit the website for the book at www.yourbrainafterchemo.com.

If you or someone you love is experiencing symptoms of cancer fog, please discuss it with your physician. You also need to know that some providers have been reported to be less than receptive or knowledgeable about this topic. Remember that the information on this is relatively new and that some oncologists are incredibly focused on curing you (and thank heaven for them) but may not be as focused on the quality of your life post cancer. Make yourself heard. Here is a info sheet from CancerCare with talking points for your conversation.

For spouses, I am still sorting through the best ways for us to be both supportive and patient with our foggy partners. It is frustrating to repeat ourselves over and over again yet we cannot blame the survivor any more than we can blame a person affected by dementia. It is challenging to celebrate survival while experiencing guilt over our occasionally less than admirable responses to their lasting cognitive effects.

I welcome input from anyone who is living this part of the new “normal”…how are you adjusting to these effects? How has it affected your relationship with your spouse? What implications, is any, do you see in terms of parenting?

By Michelle | Posted in Uncategorized | Comments (0)
Nov242009

When cancer sidetracks our parenting

By Michelle | November 24, 2009 | Posted in Parenting with Cancer | Comments (0)

I just discovered an amazingly honest and heartbreakingly poignant post written by a mother as an apology to her children. She is apologizing for the ways that her daughter’s leukemia has impacted her other children and her parenting. Although this is a childhood cancer story, it is amazingly similar to the feelings that parents have about the impact of parenting through cancer.

I can say that I have felt many of these during the course of my husband’s diagnosis and treatment. Beyond that, I will let her speak for herself: A Letter of apology to my kids.

By Michelle | Posted in Parenting with Cancer | Comments (0)
Oct202009

ARTHUR talks with kids about cancer

By Michelle | October 20, 2009 | Posted in Parenting with Cancer, Talking to Kids about cancer | Tagged , | Comments (0)

Who knew? Lance Armstrong and Arthur? Really? It’s brilliant, just brilliant!

The Lance Armstrong Foundation and ARTHUR have collaborated on an clever project to reach children and their grown ups. What better way to start the conversation about cancer than to do it through the story of ARTHUR and his gang? I don’t know about you but in my house, many a library book features ARTHUR.

The episode will air daily this week. There is a fantastic Family Activity Guide that accompanies this project and is available as a free download through the Lance Armstrong Foundation. This guide, “When Someone You Know Has Cancer”, is full of tips and discussion points for families. It also covers the ARTHUR story that is airing this week, featuring the lunch lady, Mrs. MacGrady, and her recent cancer diagnosis. There are tips for parenting through cancer, suggestions for games that facilitate conversation and a discussion about talking with children of different ages. The show introduces ways that children can help someone who is sick, most of which are just great ways to be a friend in general.

But the resources don’t stop there. The Lace Armstrong Foundation has also developed school curriculum to support these conversations in the classroom. What an amazing idea. We know that our schools act as a support network for our children in many different ways and this curriculum will allow teachers to talk with their students about the diagnosis of a child or adult close to them. Please click here to visit The Lance Armstrong Foundation Classroom Resources. I encourage you to also check out the links at the top of that page to see the tremendous resources available to classrooms and to families who would like to introduce these ideas to their schools.

By Michelle | Posted in Parenting with Cancer, Talking to Kids about cancer | Tagged , | Comments (0)
Oct182009

Caring Men as Caregivers

By Michelle | October 18, 2009 | Posted in Cancer spouse | Tagged , , , | Comments off

StandByHer

Many of us turn to someone who has been through the experience of cancer when we begin to walk through that valley of shadow ourselves. No one can relate to the experience unless they have stared it down in their own lives.

If men are looking for someone who knows the experience of caring for someone with breast cancer, it has to be the author of STAND BY HER: A Breast Cancer Guide for Men. John W. Anderson lost his mother to breast cancer in 1988, ten years after her diagnosis. He also watched his sister, his mother’s best friend and his wife survive their own battle with the disease. Few men can speak to the issues surrounding the breast cancer journey from so many angles: as a son, as a brother, as a husband and as a friend. From these experiences, Anderson has created a guide to help men support their loved ones through the multitude of issues that accompany a cancer diagnosis.

It was my pleasure to exchange emails with Anderson and to hear his insights, especially related from the perspective of the spouse and primary parent. To no surprise, Anderson commented that any woman’s first fear after hearing of her diagnosis is of her children and of the fear of missing their future. As their wives move from diagnosis to treatment, “Whatever the child-caring situation is between husband and wife before cancer, more pressure is on the guy to fill in the gaps. With that said, as he picks up more of the load, the husband may feel at times overwhelmed, underappreciated, and frustrated that he is carrying more of the child load”. Combine that with the emotional toll exacted on the cancer patient herself and things are going to get interesting. It is common for cancer patients to feel a bit powerless and so they may try to regain a bit of control, even if it is accomplished by criticizing the very people who are trying to help. But Anderson stresses to men, “Don’t fight back. In fact, embrace it, because it shows how she is fighting to get her life in order”.

What about the children? I asked. “Kids need to know that everything is going to be fine; and if  not, they need to know the bad news at a level appropriate to their age. But the most important thing that you can give them during this difficult time is routine”. Every expert that I have read or spoken with has made it clear that the main priority for children is to reassure them that they are loved and that their needs will be met. Anderson certainly agreed, “Keeping things normal around the house sends the message that, no matter what else is happening, or will happen, they are going to be cared for, everything is going to be fine, and life is going on just as it always has”.

Our email exchange ended with a great story about how his son, then five year old, dealt with his mother’s cancer. “He was pretty darn proud of it,” said Anderson as he related the time that his son removed his mother’s scarf in order to end the debate that he was having with a friend over whose parent was sicker; the Daddy with sniffles or his own mother. Turns out a bald mother trumps just about anything.

John W. Anderson’s guide, STAND BY HER: A Breast Cancer Guide for Men, is now available. If you are supporting a woman that you love through her breast cancer experience, please visit the website, www.standbyher.org. In addition to other helpful information, the site features a blog and forum where men can connect with other men in similar circumstances.

To connect to the Amazon page for the book, please click here.


By Michelle | Posted in Cancer spouse | Tagged , , , | Comments off
Oct102009

Mom’s Cancer through the eyes of her Daughter

By Michelle | October 10, 2009 | Posted in Cancer Resources | Tagged , , , | Comments (0)

“Brushing Mom’s Hair” is a recently published poetic peek into the daily thoughts of a teenage girl whose mother has been diagnosed with breast cancer. Written by Andrea Cheng, the book comes from a very personal place. I recently had the pleasure of exchanging information with Andrea and she was very kind to answer my questions.

I knew that this book would be meaningful when I read that Andrea had waited to publish it at the request of her daughter. The poems were written in a voice she felt would represent her youngest daughter who was nearly 15 when Andrea was diagnosed with breast cancer. The book is intended for ages 11 and up but not necessarily just the obvious audience. Andrea stated, “I see it as a book for all kids, not just those touched by cancer in their families. I feel like it might be even more important for the ‘other’ kids who are not going through this sort of situation at the moment to learn what their friends may be experiencing”.

She was very candid in expressing how her diagnosis had affected each of her children, all teens at the time, differently. Even her oldest, who was in college, struggled with the implications of the cancer. She was also very honest in responding to my question of how she recalled talking to her children about her situation; “The whole time feels blurry.  I felt sick and also very tired a lot of the time.  I remember laying on the couch and wishing I could help the kids but not knowing how and then dozing off”.

The narrative is candid and covers the common physical consequences of breast cancer as well as the emotional impact on a teenager who is observing all of this. One of the loveliest comments that Andrea Cheng made was “I guess I want to give the kids (and the world) the message that there are lots of ways to be fine.” That really struck me as there are a number of choices that an individual can make to change their appearance during and after treatment: reconstruction, prosthetics and wigs, to name just a few. It is truly a message of strength to “be fine” in one’s own body when that body has been so mightily defended.

More than five years later, Andrea says that her children have incorporated the experience of her illness into the story of their teenage years. Her comments about her children were very reassuring to me and will be to other parents as well.  She says that her children respect the fragile gift of life but also have become stronger themselves and more aware of what a person might be capable of surviving.

Please visit  www.andreacheng.com for more information on this and the author’s other works.

To visit the Amazon listing for “Brushing Mom’s Hair” by Andrea Cheng, please click here.

By Michelle | Posted in Cancer Resources | Tagged , , , | Comments (0)