Author Archives: Michelle

Give Responsibly

It is now October.

October, of course, is Breast Cancer Awareness Month. And that means that every store shelf and sale circular’s color scheme seems to be taken straight from the little girl aisle at the toy store. Seemingly, every food product, household cleaning product and piece of athletic apparel is either enclosed within pink cardboard or embroidered with a tiny pink ribbon and with the promise of making a donation to a worthy foundation. The disease behind all of these ribbons is the second most common type of cancer in women. It changes the lives of women and the people who love them, as some of you know all too well. That’s why we care about those pink ribbons. It’s also why all of this pinkness inspires me to encourage you to shop responsibly. 

Cancer took my mother from me and threatened to take my husband. I know too many who are actively fighting or walking wounded. As a result, I applaud and agree with your spirit of giving. The thoughts that I have about charitable giving apply all year long but there is something about the power of the high profile pink ribbon that causes some of us to lose sight of the big picture. Since our desire to contribute to any important cause comes from the right place, I think it is only fair to ensure that our money also goes to the right place.

Therefore, please consider:

Is the company offering that widget truly committed and generous with their support of the foundation? How much of your purchase price will actually be donated? You might be surprised how small the percentage will be in some cases.

Does the company cap their donations? If the donation is made only for the first million thing-a-ma-jigs sold and you’re about to buy the million and first, then you are no longer a giver; you are just a consumer. And if you still want to buy the thing-a-ma-jig, then please do. Just do it knowingly. 

Is the company responsible and consistent with your belief system in its other corporate practices? Would the proposed donation mean the same thing to you if a hypothetical company made contributions to a children’s charity but also used child labor?

Remember that if you admire a charitable organization and believe in their cause, you can contribute to it without purchasing anything. Simply get out your checkbook and fill in the amount. The beauty of this method is that they will get 100% of the amount and it is capped only by you. It never hurts to do a quick check of any organization through a website like Charity Navigator or Guidestar. They offer information on how to evaluate an organization and ensure that your money will be used responsibly. Among other things, you will want  to see how much of the donation will go towards administrative or fundraising costs versus the actual work you’d like to support. The sites can also help you identify the best choices among the many organizations that work within a category of your choosing. 

Having made all of these suggestions, I believe that if all things are equal and you need a box of do-dads, then buying the box that has a worthy cause attached is a lovely thing. In these times when more might be in need and when giving might be a bit harder, doesn’t it make sense to be more conscious when you spend with your conscience?

There are many worthwhile organizations that truly make a difference in our lives and in the world. Their fundraising and awareness activities are important. Just make sure that the purchase of that watchamacallit will create the good that you expect and make your giving matter.

Leaving a Trail

“Do not go where the path may lead. Go instead where there is no path and leave a trail.” Ralph Waldo Emerson

 

Dennis Pyritz, of www.beingcancer.net, raised an interesting topic this week. He was talking about the community of cancer bloggers and just asking questions about what motivates people to blog about their experiences, why they continue even after treatment has ended and what it means to be part of the larger picture. It’s good timing because I have been thinking about some of those very issues but more related to the decisions that people make after they have gone through a difficult situation such as cancer. 

We all know that cancer has a way of sorting out our relationships for us. We quickly see which friend is willing to rise to the challenge, which relative stranger comes out of nowhere to go above and beyond for us and which friends and family members simply fade away. I have known people to be astonished and dismayed to discover that the very friend that they expected to understand the best failed them. How could it be that the friend whose own life had been touched by cancer would be the one to turn away? I have really been considering this over the last few weeks. What is it that makes some of us extend a hand to help another in a similar situation? And conversely, why do the others not feel compelled to assist, to give back, join the fight or pave the way? 

Personally, I am here to try to provide the resources that I looked for and could not find for our son. I am here to express the thoughts that I did not feel previously able to put into words. When my husband was in treatment, I did not have the strength, time or wits about me to put a website together to help others. I guess that is not very admirable in the face of people who devote their days to the cause even as they actively fight their disease. But it’s true and although I showed up a bit late for the party, I am here now.

And I do want to validate other spouses in their own inability to focus on anything aside from what is happening in their very own homes for a time. I do want to respect that just as we all grieve in different ways, we also do cope in different ways, rage in different ways and heal in different ways. But don’t all of those emotions come from the same place within us?

I think that is the reason that I do not understand why others do not feel the desire or responsibility of making the path a bit smoother for someone who is coming behind. Especially if someone else walked before us cutting a wide swath in the thicket to make our own trudging a bit easier. Or maybe walked along with us just so we wouldn’t feel alone. 

And so, Dennis, I think that’s part of why I blog in the wee hours of the morning. Because if I didn’t emerge from my husband’s diagnosis a little bit wiser or more resourceful or kinder or more grateful then I think I failed him in some way. And I don’t want this family to go back and try it again, that’s for sure.

Why I Think My Son Is also a “Survivor”

 A few months ago, I finally put into words what had been running through my brain routinely since my husband’s diagnosis. I just kept thinking that anyone who loves someone diagnosed with cancer has also earned the “survivor” label. I mean no disrespect to patients but simply wanted to express the emotions that accompany the experience of loving and caring for someone coping with cancer. Once I started putting the thoughts into words, the words came so hard and so fast that I am certain that they were lined up in my heart just waiting for their chance.
The following is an excerpt from my essay and focuses on how I think the children in the home earn their medals of survivorship too.

“…..Our son is a cancer survivor too. He had no idea that the boogeyman had moved into our home when he was only two. He is a survivor with parents that flinch and look over their shoulders at things he cannot see. He is a survivor because his parents have been changed in every way: the way that they parent and the way that they love and laugh. He may not have known it, but there was a time during which neither of his parents were quite the parents they would have wanted to be: that makes him a survivor. He survived the days that Daddy’s legs could not carry him far enough or fast enough into the park. He survived his Mommy’s frayed edges in being everything to everyone. He is a survivor because he will change over time and will understand someday what he cannot understand today. He will be seven when we celebrate that magical five year mark and will begin to understand what he almost lost. He is a survivor because he will never know the number of times that his little arms wrapped around my neck in a hug that brought me back from the edge….” 

On “Being Cancer”

Michelle asked me to write a guest post for her really unique blog.  When I first heard about her Living Sunny Side Up and added her to my small, evolving blogroll, I had to create an entirely new category.  She addresses a situation that is so common to adult cancer survivors that it is surprising no one else had yet conceived a blog dedicated to helping cancer victims deal with parenting issues.

 

When I was first diagnosed, I had already been working as a cancer nurse for most of my children’s lives.  I have a photo of my two oldest boys, now 34 and 31, as two young boys, shirts off, with me drawing a skeleton on Nathan’s chest, and organs – heart, lungs, stomach, liver – on Ben’s.  They became part of my nursing school experience.  I would sometimes take them to the university swimming pool, arriving there from the underground maintenance tunnels that linked the buildings on campus.  Later, when I worked in the hospital, I would take for tours.  Sometimes we would stop and visit with some of my patients.

 

I had been working in oncology for 15 years when I was diagnosed, working at the bedside, serving as manager, serving as mentor and teacher.  I had given talks around the country and around the world.  I had taught cancer nursing in a dozen developing countries.

 

And yet on the day that I was given a differential diagnosis of lymphoma or leukemia, none of this experience had prepared me or my family for how to react or how even to talk about it.  From my journal:

 

I get home and my youngest son, Aaron, runs out to tell me that he has had three calls from doctors in the past 10 minutes.  Two from Tom, our family doctor, and one from a new doctor who told him that I have a Friday morning appointment.  Aaron is getting ready to leave for a four day National Catholic Youth Conference in downtown Indianapolis.  He had noticed on Tuesday the bandage and cotton ball on my arm.  And he now realized that I had taken the day off from work.  I have not thought this through and vaguely worry that I may be in the hospital by the weekend, before he returns home. So I sit Aaron down on the front steps and tell him that I might have a type of cancer.  I start to get tearful which I did not want to do – not now.  I regain control.  I tell him to pray for our family during his retreat.  Then I send him off.

As soon as they drive away I worry that I have made a mistake in telling him like that.  I try to call out to them as they back their car into the street.  I want to tell Norma, the group leader and our neighbor, what was going on and what I had told Aaron.  But they do not hear me.  

 

 

I was soon in the heat and fury of active treatment.  It was left to my wife, Tish, to deal with the parenting issues.  My oldest two were living their young adult lives by then.  So I cannot pretend that I know much about dealing with young children at home.  I have two young granddaughters now, 4 and 16 months, with twin baby girls on the way.  I am grateful that they were born after my illness, spared the confusion.

 

Here we are, some years later, and I have an eight-month old blog, Being Cancer,  dedicated to “networking people transformed by cancer.”   Michelle generously thought that there might be something of value at my site specifically for parents with cancer.

 The most popular feature is Cancer Blog Links , containing over 600 blogs divided by disease category.  Parents with cancer may find some new perspective in the categories populated by children’s cancers – neuroblastoma, leukemia, and brain cancers mainly.  Scattered throughout the list are hundreds  of blogs by people who are also parents of young children, including many of the breast cancer bloggers.  Also see Mothers with Cancer blog.

 

Mondays are Book Club discussions.  In the archives are reflections on our first selection, The Last Lecture, in which a dying father’s concerns for his young children are central themes.  In the Reviews section you can find book and movie reviews related to cancer.  A recent review of My Life Without Me deals with maternal legacy concerns.  My Cancer Resources page contains close to 300 references.  Although I have not started annotating the list, relevant material may be found in the ‘Support” and “Childhood Cancers” sections.  And, of course, shamelessly sprinkled throughout the site are dozens of photos of my girls, Sophie and Isabel.

 

I thank Michelle for this opportunity to introduce my site.  I look forward to your visits and comments.

 

Dennis Pyritz, RN, BA, BSN

Being cancer, networking people transformed by cancer

 

 

Featuring Cancerdirectory.com

 

 

 

Here is the first of what I hope will be many guest posts by other cancer resource websites that serve the cancer community. Please take a look at what cancerdirectory.com has to offer and visit their site for more information…
-Cancerdirectory.com is one of the leading and most respected cancer information websites, dedicated to helping those affected by cancer as a way to bring happiness back into their lives.
We are a community of patients, survivors, family members and health professionals who share our individual stories with each other and the world.
Cancerdirectory.com includes survivor blogs as well as the latest cancer and treatment news, reviews and links to the best cancer sites on the internet.
If you would like to blog with us, have a blog or a website you would like us to review, please send us an email to lauri@cancerdirectory.com. 
We hope we can help you through this difficult time!

 

 

Remind them

My son’s preschool class is learning a very important lesson. They have read the story “In My Heart” by Molly Bang which reminds them that even when children are away from their parents, we keep them in our hearts. He came home with a heart necklace that he decorated on one side and we will glue a family picture on the other side. Once returned to school, it will be a simple way for him to look at our smiling family when he is sad or feeling lonely at school. 

It seems to me that this same technique can be used when it is illness that separates parent from child. It might be a hospitalization that physically separates them or just an extended illness that causes more absence in the routine than usual. 

I do similar rituals when I need to travel for work. If I have to leave before he awakens, I fill the bed with his stuffed animals….all lined up to smile at him when his eyes open. Or I place notes in strategic areas to let him know that I love him and miss him: at his place at the table, in his car seat for school, in his shoes for when he goes out to play. These are really simple acts that have helped us both with our separation.

What simple things do you do to ease the transition of your absences? What physical item does your child have to remember you when he is feeling lonely? In the worst case scenario, have you prepared these types of reminders for after you’re gone?

Breaking the News

I just don’t understand. I am trying really hard to understand but I just can’t get my head around it. I have encountered several stories in a variety of places over the last few weeks in which parents have made the choice to not inform their children about “The Diagnosis”. Now, some families do not have the choice of withholding this kind of information from their children. Awful things happen to parents sometimes, They walk out the door in the morning and they don’t come back. There is just not much choice in these situations. I’m not struggling with that scenario (at least not in regard to this topic). I am struggling with the scenario in which there is a cancer diagnosis, there is treatment occurring and there is a lot of omission, denial and mistrust. I can understand that the decision is made out of love for the children and concern for their ability to cope. But what good can come out of this particular choice? It seems that trying to make things easier would just end up making everything harder in the end.

I actually read a story recently in which the same conversation that the children learned about the parent’s diagnosis was the same conversation in which they learned they were about to say good-bye. There had been a lengthy illness and there had been time. There is never enough time in these situations but there had been time to have multiple conversations and make some beautiful memories. And there are just no “do overs” in a scenario like this. You cannot go back and try it a different way. It seems to me that everyone loses: the ill parent loses the ability to talk honestly with his children, say what needs to be said and receive comfort in the sweet ways that only a child can give it. The well parent loses all of these and could be left holding the bag with children that have not been given time to process or grieve. And the children? They may lose a parent, a significant amount of trust and an opportunity to help and heal with their family.

I know that breaking the news about a cancer diagnosis is tough for anyone, particularly a child. But I have to believe that our children deserve the truth. It has to be delivered in age appropriate ways and with plenty of honesty and room for questions and emotion. A cancer diagnosis is given to one person but it happens to the whole family. How else can you all hold hands and help each other be brave if everyone isn’t allowed to participate in their own way?

What was your experience with talking to your children about a cancer diagnosis in the family? Did you consider not telling them?

When Kids Come to the appointment

We went to the oncology office this week for the regular follow-up appointment and subsequent deep exhalation of stale and pent up breath that we have been holding for too long. Good news awaited in the form of a clean scan and future appointment are scheduled in hopes of explaining some concerning symptoms.

It did amuse me, though, when the provider greeted our son and remarked how we always brought “great things to entertain him”. It makes me wonder what other famlies with small children in tow do to keep their own little people happy. We have no nearby family so our son is frequently along for the ride. I also hold the opinion that  it makes the situation less mysterious and hopefully less frightening to children to come along and see what it is all about. It is easier to talk about the doctors that are helping Daddy to feel better if he gets to come along and meet them and see their friendly faces.

So, with that in mind, here’s a peek into our little box of tricks…

Our little guy is four now but he was two when we startd our regular trips to this office. Preschoolers might enjoy watching the actual exam of Mommy or Daddy but there is often a lot of waiting before that part happens and ever that has a limited time offer. We have always taken some new amusement along with us to keep him busy and happy for a visit that is always longer than expected. Sticker books have been his addiction off and off for much of the last two years. After all, cancer magazines might be fascinating to me but they don’t hold much attraction for him. There have been coloring books and backpacks with snacks on a visit or two. Even a few select Matchbox cars have made the trip although that one can be risky depending on the day. In a pinch, there is always the back of a random envelope and a pen for tic-tac-toe or scribbles. We have also been known to  bring the portable DVD player with a set of headphones. We don’t allow much screen time for him so a movie is a particular treat that he does not often have. (I seem to remember Frosty the  Snowman playing in it during a holiday time appointment.) This time we had his Leap Frog Tag reading system with one earphone in his ear and the other in mine. And the office always has a jigsaw puzzle in some degree of completion and at recent appointments, he has delighted in contributing to that project while we burn some time the waiting room.

My survival tips for my husband’s medical appointments are simple. If our son is sick, he does not enter the waiting room. When he could not go, that meant I could not go. I suggest you have a back up plan or a friend that you can call in a pinch. Bring plenty of guaranteed diversions. If you can sneak something new into the bag, it just might help to save the day. Headphones are excellent for not only containing the noise we might create but also for helping us to shield him from excessive information at a young age. There are not often young children in waiting rooms so I have found that most patients and staff are happy to see a child in the office as long as the noise and chaos are under control.

Follow the clinic’s rules and wishes regarding children and where they are allowed to enter. Remember that chemo targets rapidly growing cells and what are children? Fast moving bundles of rapidly growing cells! Infusion areas are usually off limits for young children. Treatment days might be a good time to arrange a play date so that everyone has an easier day.

There is a bit of guilt that was packed into that backpack too. When I had to choose which of my boys to be with on any given day, I always grieved having to make that choice. Sending my husamd to infusion alone was sometimes a necessary evil. Sending my son off with someone else or constraining his enthusiam in the appointment never made me feel like Mother of Year either. 

Let me hear form you. What survival tips did you employ to keep kids under control in the medical office setting?

After the PET Scan

Here is something that has been a confusing issue at our house. After my husband returns from his PET scan, how long should he avoid close contact with our son? He’s received conflicting information on this topic at various scan appointments. Of course, we’ve done the “Google research” and tere are certainly differing opinions to be found there too. If I had to summarize, I would say that most opinions seem to agree upon avoiding close contact with children for a few hours after the scan. Rather vague, I think.

It goes without saying that if we can avoid passing theoretical radioactive effects from one person to another then that would be a good thing…especially when that comes to our little people. Whether or not that is something to truly lose sleep over, I have no idea.

My own suggestion to anyone who might read this and have a scan in the near future is to ask these questions of your oncologist, radiology expert or other health professional. I am none of these and never pretend  to be. I just know that it didn’t feel good to be told at the second scan appointment that my husband should avoid contact with our child when he wasn’t given the same warning the first time. It might sound a little funny to say that we wondered if our son glowed briefly, but really, it’s not funny at all.

What is your understanding of this issue? What precautions do you take with your children and spouse?

Cancer by Any Other Name

I am very interested in how parents talk to their children about a cancer diagnosis. In our house, our son was a bit over two years old and so we chose the words “sick” and “owies”.

It was my pleasure to speak to Julie Larson of CancerCare last week and we discussed this whole topic at length. She made perfect sense when she made the comment that children really don’t fear the word “cancer”. As parents, we choose not to use this word in talking with our kids because we think we are sparing them additional worry. But it isn’t any different than any other word to them. They don’t attach worry, grief or any other adult context to it…unless they see us emtionally respond to it in these ways.

And I hadn’t thought of it before but now I realize that by not using the real word “cancer”, we might actually be making it worse on our chldren. They could hear the word used later and think this is a new diagnosis, event or situation. It could cause our children to wonder what other information we might be withholding. And all that just because we are scared of one little six letter word. If he had been older, my chosen word “sick” might have connected the disease affecting his Daddy with the stuffy nose that affected our son. We all know that cancer is not contagious and certianly wasn’t caused by my son’s lack of hand washing skills or falure to keep his finger out of his nose. 

God willing, I hope that I do not have to have this diagnosis conversation with our son, now four years old, ever again. But if I have to go down that road with him this time I will use the word “cancer”. And just like always, we will all hold hands and help each other be brave.