Parenting during a cancer diagnosis

We deeply appreciate the support that everyone gives us, in so many ways. We could not do this without you, and often, your strength carries us. Thank you.

Cancer can be isolating in many ways, and most especially when it comes to parenting. Your support holds us up so that we can be there for our kids, helping our children and our family as a whole.

Sometimes, though, I need to talk with someone who understands, someone who is in the trenches, someone who lives this. And while I would never wish this diagnosis on someone (okay, maybe I did once), I know that there are other people in this situation. I just don’t know them personally right now.

Plus, our kids can use some kind of support that they aren’t currently receiving, and I can’t put my finger on what that looks like. I know that there are many parts of this “lifestyle” that they find unsettling and abnormal, and for as much assistance (from family, friends and professionals) that we are fortunate to have, I can’t help but feel that they also need a community who understands their life situation and among whom they can feel normal.

I talked with the Dana Farber gastrointestinal social worker about this. She listened generously and heard our underlying need.

Most of the cancer world, as far as I can tell, is segmented by disease type. Breast cancer patients go together on the same floor and have their own designated topics for discussion and means of support. Colorectal and GI patients are grouped. So are blood cancers, bone cancers, and others, each with specific informational sessions and discussion groups.

But this social worker pulled together other professionals across those lines to create a half-day workshop to support families who have a parent dealing with a cancer diagnosis. Any kind of cancer.

I signed us up.

When the day arrived, I was post-chemo exhausted and no one in my family wanted to go, but I dragged myself and them. Our group consisted of approximately 16 adults (some who came as couples, some as singles) who brought children ranging from (I estimate) ages 4-14. During the first two hours, the children were in one room doing an activity and the adults were in another having a discussion.

We quickly found common ground. First of all, every family had a parent who was diagnosed with stage 4 disease.

Secondly, the aspects of our daily lives were surprisingly similar.

We related when someone talked about plans they made with the kids, then cancelled at the last minute because we felt too sick or tired. We chimed in about dealing with developmentally-appropriate discussions that come up but feel loaded (e.g., it is hard to discern when a child brings up death because they are processing their thoughts on what might happen with their parent, or they are simply learning about death as a general concept). We discussed helping our children deal with the overwhelming anger they can feel about the situation, often when they are still learning to recognize and label their feelings, and knowing that this anger can’t be directly resolved and doesn’t simply pass with time. We talked about not being as involved with our children as we would like, and needing to step back and let others do activities with them that we so desperately would prefer to do ourselves.

We recognized the strengths in each other, and we compared notes on ways to handle certain situations: How do you get a twelve-year-old to communicate? What is the best way to leave some essence of yourself and your teachings and beliefs with your children?

We commiserated on situations that we all face but none of us knew how to handle, like how do you enable a child, as they grow, to push you away as they naturally would without having them feel guilty about not spending enough time with you while they could? At what point do you tell a child that their parent is about to die?

And we talked about not being the parents we envisioned or having the family life we wanted to craft. Not even close.

I got a sense of normalcy from being with everyone in this group. Our boys connected with the other kids, one strongly enough to exchange information and want to stay in touch.

As you might imagine, we all arrived home EXHAUSTED. I find that I am still processing this – the benefits I got, the feelings that it stirred. Probably our biggest gain, individually and as a family, was a sense that we are not alone. We are feeling our way as our children grow, there are no good answers, but…we are not alone in this.

This group is not scheduled as an ongoing entity. I’m not sure it should be – I don’t have the energy to do this regularly! But it was helpful and I hope to always tap back into what I learned and the feelings it generated.

As we move forward, our family appreciates that you share your strength, your energy, your culinary skills, your caregiving, and the myriad other things you do and are. It surrounds us and carries us and helps us to find our way. And I have hope that, if something should happen to me, this energy as well as your presence will help to carry our family forward.

With love and gratitude,
Marie

Scan results good

Thank you for your prayers and positive thoughts for my scan and the chemo that followed.

The scan itself went well, with only one small bit of excitement:

• They accessed my port, then tested it by shooting saline in and testing for a blood return (does the blood flow out?). Fine.
• I drank two bottles of contrast or whatever it is. Fine.
• I lay down on the table to be scanned, and a tech flushed the port again and again checked for a return. But this time, no return. Ugh.
• She called in a nurse, who tried again and again, moving my upper body into many positions. Still no return. They asked if I had a vein they could use. I have one vein in my hand they could potentially use; I protect that with my life. I panicked and told them that I would rather reschedule the scan.
• So she tried one more time and, voila, blood return. The nurse was happily shocked – she said that she has never seen that. I simply gave thanks that it happened.
• Scan itself then went smoothly, and no side effects from the contrast. After all the excitement, I slept much of the rest of the day.

Scan results were good:

Got the results on Tuesday, just before I went into chemo. Good news: No new spots. The current spots are all stable or smaller. 

(Sorry for the delayed report – between chemo and recovery, I’m just writing now.)

All three days of chemo went smoothly. Yay!

Thank you again for helping me through this week and for supporting my family. We really appreciate all of it!

Love,
Marie

The Journey

I was lucky enough to lector at Mass today, and one of the readings was 1 Kings 19:4-8. In preparation, I read the passage several times during the prior days.

Essentially, Elijah is DONE. He wants to simply die in his sleep and be done with it all. But an angel wakes him and tells him to get up and eat. Elijah eats but then goes back to sleep.

So the angel wakes him again and tells him to eat more, because otherwise the journey will be too long.

First of all, I love that the angel prods until he or she gets heard. I’m hoping that means I will get several chances to hear any important messages. And second, telling Elijah that he has a long journey ahead feels optimistic, implying that he still has a lot to do.

But the giving up – I can relate. During my chemo days, I’m just done. I lay in bed and often I feel that if I died in my sleep, things would be so much easier.

But then chemo ends, and I get up. Sometimes I need and appreciate a little extra prodding. Most often, I shower and eat and drink, and when I do, it helps me to keep going. Well, that and a bit of social interaction. The social interaction really feeds me. I try to take one day at a time and, often, the following days are pretty darn good.

I am incredibly grateful to still be here. This morning in church, I also read the names of two people in our parish who died this past week. One name stayed with me and soon after, I learned that she was about to be a senior in high school and died of cancer. No matter how many times and ways I hear news like that, it is sobering.

Hopefully my journey is long, though I don’t want it to feel long in a horrible way. I want it to be long in a good way. But it will be whatever it will be. As long as I am here, I guess my job is not done.

Next stop on the trail: I have a CT scan tomorrow. I typically don’t have a lot of anxiety around my scans, but I do have anxiety around getting poked. They “access” the port in my chest, which means they stick a needle in it so they can do an IV contrast. This is infinitely better than getting stuck in my arm or hand. Actually, I have only one good vein left, and it is in my left hand, so I am endlessly grateful for this port.

Still, I hate getting stuck and this week, I will get stuck on Monday for the scan, and again on Tuesday for the blood draws and infusion. I am taking lots of deep breaths.

Thank you for being along on this journey. Thank you for your prayers and good thoughts. And thank you for staying nourished, so we can all walk together and even socialize along the way. May your journey be long. And fun! Thank you for including me.

Love,
Marie

Hailstorm

The other day, we had a rare hailstorm. Huge balls of hail dropped suddenly and pounded so loudly that I thought someone was stomping inside our house.

Photo courtesy of Ann Sweeney

Once I realized what it was, I watched in amazement through the screen door. I love extreme weather…as long as I feel safe.

The storm continued as I watched in awe, then I realized that I needed to pick up the kids from camp. Knowing that I would need to park the car and walk into the building to sign them out, and they would have to walk back with me, I grabbed a couple of umbrellas and hoped that was enough preparation.

Really, though, I hoped the storm would stop and I wouldn’t have to deal with it live and in person. I didn’t want dents in my car and I didn’t want to be pelted as I walked. But I couldn’t delay any longer. Even if I wasn’t excited about it, I was going to have to step into the hail one way or another.

Just before I left, a friend texted me: What are you doing?

I quickly responded: About to drive into a hailstorm.

I laughed when I realized that this is pretty much my life. I seem to frequently drive into these sudden storms. Here goes another, though literally.

Thankfully, in the moment between that text and the time I started my car, the hail stopped and the sun shined brightly.

I hope that, if you feel like you are heading into a hailstorm, it clears up before it hits you. And if it doesn’t clear up, I know you will deal with it somehow. I hope for the best for you, always. And even a hailstorm can bring its own wonder.

I will try to remember this myself as I head into a CT scan on Monday. Thank you for any and all good wishes and prayers!

Love,
Marie