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

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.

Backyard hailstorm August 2015

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

Through a hard place to the good

During my entire life, I watched my parents take care of other people. They prepare meals for those who need them and, when their family or friends can’t drive, they take them to the store, post office, doctor visits and any place else they need to go.They are the ones who show up in your hospital room, who care for the elderly, who regularly visit their loved ones in a nursing home, who sit with their friends as they are dying, who show up for a funeral.

Every month for the past seven years, since my diagnosis, they drove over 600 miles each way to take care of the kids, my husband and me during three of my chemo days. During the times when I had surgery, they stayed for longer stretches.

My father – who owned a grocery store and was a butcher his entire adult life – did the grocery shopping and made sure we had fresh food in the house. My mother cooked every meal (even delivering hot lunches to my kids at school) and maintained the kitchen. I loved that she was at home there and ran it like her own. They played with the kids and supervised their schedules. They kept the house clean and made sure that life was easier for my husband. They kept me company as I lay in bed or figured out which drugs helped with nausea and which simply made me a crazy person.

Because I watched them take care of so many others, I took for granted that taking care of me was just part of “what they do.”

This past winter, they didn’t come to visit and help. Granted, we had record snowfall this past winter in Boston, so I assumed that kept them at home. Plus they were getting older (I didn’t like to admit that) and the drive was long.

I missed having them around but was fine with it. My basic assumption is that help comes in many forms and not to hold expectations of what others should do for me. I’m blessed to have help at all!

But the other weekend, my husband shared with me that my parents are coming less frequently because it is hard for them to watch me go through this. Yes, I have good days, but because they are here to help, they see me on my not-so-good days. And to be honest, even my good days are not “normal;” even when we visit on Christmas (for example), I spend a lot of time sitting or in bed.

I don’t like to think that the people I love are suffering because of what I am going through, so I mostly ignore that. But here I was, face to face with the fact that two of the strongest people I know, people who do this as a way of life, find this hard. How difficult it must be. And if it is difficult for them, as adults, how difficult it must be for my children to live this every day. I was deeply sad.

I wondered if I should just stop, if that would be easier for everyone. Then anyone who needs to could mourn for a bit and get on with their life. I know, spoken as one who has not lost a parent, sibling, spouse or child.

I don’t like to feel sorry for myself so, after whining to a friend, I showered then took the dog for a walk.

A few houses away, the dog stopped to relive himself. I noticed that it was in a neighbor’s front lawn, but it was on some rocks near a flower pot. Probably not ideal, but at least their grass wouldn’t turn yellow. Besides, it was just another thing on my list of things that I cannot do anything about.

I felt like it was okay.

Another neighbor did not. She saw this and let me know in no uncertain terms that my dog was not welcome there. I was feeling so down that I couldn’t look at her. I just apologized and walked on.

As I walked, I continued to think. I was now sad AND angry. Who was she to talk to me that way? I tried to remind myself of who I was, of the good and strong things I have done. I wanted to feel like I was better than her. I told myself that, if this was her biggest worry then how small her life must be.

I also knew that when I am down, I tend to attract a lot of negative energy, and I was certainly down. I had to get out of this cycle or more crap would be coming my way. How could I break this cycle?

I tried to be generous and think positive thoughts about this woman. Maybe something heavy was on her mind this morning? Maybe her life is challenging in some way that I couldn’t see.

I hated that I didn’t stand up for myself. In my mind, I considered what I might say if I had a do-over, how I might handle it.

And at the bottom of all this, I kept wondering, why I am still here? Life felt crappy. I didn’t want to be here. Why doesn’t this all just end?

Walking back toward home, I noticed this woman still in front of her house, hosing down her driveway. I stopped in front of her, intending to tell her….I don’t know. Something.

She kept hosing the driveway and didn’t look at me until I spoke.

“I want to apologize,” is what came out of my mouth. “I’m sorry. I don’t usually walk the dog around here. You won’t see us again, but I want you to know that I didn’t intend to cause a problem.”

She started telling me about the rules for walking a dog, where they can go to the bathroom, etc., and I listened. She was clearly upset and focused on this issue, and it felt bigger than just me and my dog.

When she finished talking, I apologized again, and my eyes welled up with tears. She tried to console me.

“I’m sorry. I just had a really hard morning.” And I found myself telling her about it.

Her entire being changed, and she hugged me. She apologized for being so hard on me and told me why she was fixated on this topic this morning. She cried with me.

We talked about other things in our lives when she suddenly said, “God wants you here for a reason. And you have to take care of those boys. They need you.”

Unprompted, it was the answer to my question and exactly what I needed to hear. Maybe the path to get to this message was painful, but that path got me where I needed to be, and I could finally move forward from here. A gift, from an unlikely source.

So I need to remember, not only the message she gave, but also that when a moment is uncomfortable, it may be taking to me someplace I need to go.

Hopefully, you can get your messages in more fun ways than this. And hopefully I can too!

Love,
Marie

Note: A few details of this story have been omitted and a few have been slightly changed to hide the identity of the woman. I am grateful for all that she did, but she would be mortified if others knew who she was. I really believe she was doing God’s work, but I would hate to add to any burden she feels.

Complicated blessings

Chemo went smoothly this week with far fewer side effects than is typical. Plus I didn’t get hip pain from the Neulasta shot. I’m grateful.

The only real problem I ran into was this: On Thursday night, I couldn’t sleep. On Friday night, I did sleep…for two hours. On Saturday, totally exhausted, I went to bed around 8:00 p.m.

Our younger son fell asleep in our bed and, like many kids, seems to expand at night. The dog curled up at my feet – well, really, where my knees would be. I folded myself into the postage-stamp size space that remained and actually fell asleep.

Before too long, I woke to three long, piercing beeps that indicate our clothes dryer is done. My husband was leaving on a trip the next day and probably doing laundry. I was sure he would get the clothes so I fell back asleep.

But no – he was off doing something else and didn’t even hear the beeps. I know because about ten minutes later, the beeps went off again. Too tired to get up and empty the dryer for him, I put the pillow over my head and went back to sleep. But then it happened again. And again. I finally realized that he must have the Wrinkle Guard cycle going – where the dryer periodically turns itself back on and fluffs the clothes a bit so they don’t wrinkle. If you don’t stop this, it will continue for hours. So I dragged myself out of bed and turned off the dryer. (Yes, I checked to see if anything needed to be taken out. It was fine.)

I returned to my tiny space in the bed, which got even smaller since I left it, and fell asleep again.

Around 12:30, our older son appeared at my bedside.

“I can’t sleep.”

This often happens if he uses his iPad before bed, which we don’t allow but happens anyway.

I was annoyed and tempted to tell him to just go back to bed, but I remembered that I am not always able to get up and walk him back to his room.

So I did. But my anger brewed: He used his iPad, and my sleep suffers.

Without thinking, I gave him a hard time about it, which wasn’t conducive to either of us getting any rest.

Eventually, though, he drifted off. And while he did, I reminded myself again that I am fortunate to I feel well enough to get myself out of bed and help him.

Then I took it further: I am lucky to have someone who will turn to me for help.

Thinking back over the annoyances of the night, it felt nice to have a child and a dog so close, and my husband nearby.

My life has become much smaller in many ways. I don’t get to socialize in the ways I used to, and I miss connecting personally with friends and sharing in a meal, some exercise, or entertainment. I am often in the house for days in a row, with my husband and sons as my only social contact and our dog as my constant companion. I became grateful that, even if they were keeping me awake, they were there.

Our son fell asleep relatively quickly, and I returned to my room where I slept through the night, remembering that the things that bother me are often integrated with their very blessings.

Many blessings to you, with their complications and all, and joy through it.

Love and light,
Marie

Exceptional Patient

One of my favorite curious medical phrases was used on the old TV show Friends, when Monica and Chandler were having trouble conceiving a baby. The doctor told Monica that she had an “inhospitable uterus.” Monica’s response was something like, “I’ve always tried to be a good hostess!” So many medical terms can feel like blaming the patient, and even if we try not to take them personally, they can get into our psyche.

So, I prioritize how my doctor talks to me. My oncologist is generally upbeat and focuses on the positive, but I also know that I have no control over what comes out of his mouth. To protect myself, I often avoid topics that might head in an unpleasant direction.

Last week, however, a friend suggested that I talk with my doctor about how I am doing overall. I sometimes feel like I am out there on the skinny branches and, to be honest, I wanted to hear from him that I was doing a good job with all of this. But because asking “how am I doing?” would open me up to any answer he might give, I plunged in tentatively.

He responded that I am an “Exceptional Patient,” and I laughed out loud.

I know that he didn’t mean that I am scoring all A’s on some patient scorecard, and he certainly didn’t mean that I am so wonderfully compliant with his advice.

“Exceptional Patient” turns out to be medical speak for a patient who does not conform to the norm or to expectations.

He talked about his other Exceptional Patients and how the norm is constantly being redefined (because current statistics are based on past data, and all of us are creating new data every day we live). He explained that we don’t really know what creates an Exceptional Patient, though it involves some degree of luck regarding where the cancer migrates and how quickly it grows.

Even if it was a medical term and not the result of anything I specifically did, I liked hearing a positive phrase, especially a positive medical phrase. And chemo went pretty smoothly last week – I think that positive talk helped.

I would be remiss if I didn’t also acknowledge your positive thoughts and positive talk, which  keeps me going and often arrives just when I need lifting or encouragement to continue. Thank you. Your words are powerful and I’m sure you see the impact they have on others as you go through your day. What a gift you give. I hope that you are lifted by the good words of others as well.

Love and blessings,
Marie