Memory / Memories

The following is an excerpt of my forthcoming memoir, tentatively titled: "Cancer and Caregiving." The book is based on my CaringBridge journal from the time when my 44-year-old husband was terminally ill.

Memory / memories

Posted September 9, 2015 on CaringBridge

Tonight, as I cooked "Pioneer Pizza" (pizza made in a cast iron skillet), I listened to a recording of my aunts and dad singing and playing (on guitar) a number of old family favorites. It was a little slice of quasi-normalcy, at a time when normalcy is elusive, and highly prized.

As I sang "Charlie on the MTA" along with them, I vividly recalled singing the same song this summer, in my living room, with a good dozen+ people who had come to say the Rosary and stayed to sing together. It was such a great memory. It got me thinking about all the other good memories I have of this summer. (Don't get me wrong, I have plenty of other memories that are downright awful.)

I remember each person who has dropped off food, and stayed to chat and connect.

I remember teaching Peter to saute zucchini from the garden when he was practicing for his cooking merit badge.

I remember picking up the kids from the lake, and them begging to stay longer, to not get out of the water just yet.

I remember the happiness of receiving cards and messages from people.

I remember the late-night chats with friends who stopped by after everyone was in bed.

Speaking of everyone being in bed, I remember messing around on guitar into the wee hours of the morning.

I remember Megan getting confident with using the stove, and practicing her techniques for pancakes and assorted types of eggs.

I remember so many positives in the midst of the most awful summer ever.

I also remember some very difficult times --

The time after his first surgery when he didn't remember me. (Fortunately that was brief.)

The look on Peter's face, when the kids and I first discussed how the doctors can't fix dad's cancer. Peter heard me sniffling, and turned around in shock/surprise when he realized I was crying. And later that night, when Megan said, "I didn't know adults cried."

The initial meeting with his primary care doctor, when he first said, "there's something very wrong with your brain," and I sat there is disbelief, saying "are we really having this conversation?"

Each and every ER visit.

The time he was discharged from hospital to skilled nursing facility, and the handoff was handled terribly, and the needed medications didn't arrive until after midnight, and then only after I pushed and pushed them to fix the problem.

I could go on, but you get the idea.

All these memories got me re-thinking about something I've been marveling at lately: I think it's a wonder that any of our brains work at all. I mean, as I watch Dennis' memory decline, I am amazed at all the things any of us remember. Consider some basic categories of things:

vocabulary words - think of all the thousands of words you know, including spelling, definition, how to use them properly, etc. And some people know hundreds or thousands more in another language, too. (Why do I still remember "aus, bei, mit, nach, von, zu, ausser, seit" from German grammar class in high school??)

hobbies - think of a hobby - say, home improvement in my case - and think of all the tools, their names, how to use them, which projects you used them on, which saw is better for which type of cut, for example, and on and on.

songs - think of all the thousands of song lyrics and melodies you know. And commercial jingles from decades past that are still rattling around somewhere in your head.

professional knowledge - a whole, vast area that I won't even try to describe - but think of all the details, big and small, that one needs to know related to their job, and how you constantly have to integrate all that into relevant and coherent thinking related to whatever issue is at hand.

random memories - the name of your camp counselor when you were 12; what happens in all the Brady Bunch episodes; the list of Presidents that you memorized in 3rd grade; and on and on and on....

How ever do we remember all these things? Really? And how much has to get messed up -- by cancer, brain damage, etc -- in order for us to not remember then?

When I think about how Dennis has declined so rapidly, from someone who was working and living life normally 4 months ago, to someone who is now much like a dementia patient, I wonder why and how any of our brains can remember all the things I described above, and so much more. It's really amazing to me. If anyone here can explain how memory works, please do.

All evening the song "Memories" from Cats has been stuck in my head. Problem is, my memory is a bit fuzzy on it (ironic, I guess :) So, the sound track circling through my head goes something like this: "Memmmmreeees, da da da da da da daaaa / da da da da da da daaaaa / da da da da da daaaaaa" Not too good! Maybe I'll look it up on You Tube so I can get that endless loop out of my head.

Now, tonight, I have no news on the infection. I thought they might be calling as soon as today, but they've not. I feel like the other shoe is about to drop. He's been home about a month; I am predicting he will be back at the hospital soon, but I really don't know for how long, nor whether it will be a quick in-and-out or something longer involving another surgery. I'll keep you all posted.

How becoming a young widow taught me to turn grief into action

Starting a social microbusiness with my 10-year-old was Step 1 in conquering “widow brain.”

“I need to figure out how to build a web site, because it will help Megan with her grief.”

My family in September 2015, shortly before my late husband went on hospice. (Photo courtesy Rebecca Ort Photography)

My family in September 2015, shortly before my late husband went on hospice. (Photo courtesy Rebecca Ort Photography)

This was the thought running through my head as I pondered how and where to create a simple web site to sell notecards with my 10-year-old’s artwork. She and I had started a social microbusiness to raise money for brain cancer research; she was handling creative and I was handling the business side of things.

You see, I had lost my 44-year-old husband, Dennis, to brain cancer a year earlier. It’s a devastating disease that has claimed the lives of John McCain, Beau Biden, Ted Kennedy, and so many more.

A year out, I was struggling with direction. What should I do with my life? Being a young widow – and a solo parent – was certainly not what I had signed up for. Still, I couldn’t change what had happened. I was determined to thrive – not just survive – for my remaining decades.

I was also having trouble focusing. Attempts to work – not ten feet from my husband’s urn and the surrounding family photos – were met with flashbacks of ER visits, surgery waiting rooms, and his time on hospice. I needed something to grab onto, something that would let me claw my way back to the present day and to my new reality.

Enter Megan’s Cards for Cancer. It was surprisingly useful for me to have tangible, concrete tasks to focus on. Tasks that were a bit of a stretch – and that required focus – but not so much of a stretch that they were insurmountable. And, importantly, tasks that would help not just me, but my daughter. As a parent, that motivation to focus so I could help Megan – in addition to myself — gave me that extra push I needed to get it done.

Now that Megan’s Cards for Cancer has raised nearly $6,000 for brain cancer research at the Ben and Catherine Ivy Center for Advanced Brain Tumor Treatment in Seattle, what I’ve learned is this: turning grief into action can be a fantastic grief recovery tool. As Adam Grant said, “When you lose someone who is very close to you, you can do good in that person’s name and it becomes an extension of their life. It becomes part of their legacy.”

It turns out that regaining my ability to focus has netted me a new sense of direction, too. It’s been three years now that I’ve been picking up the pieces and, for me, the widowed parenting aspect – also called “solo parenting” or “only parenting” – has been hardest.

Because here’s the thing: even if your kid goes to a therapist weekly, a peer grief group monthly, and a grief camp for a few days in the summer – which would be a lot of grief work, really – that still leave 300-ish days in the year where it’s all on you to handle things. And it’s not like you can push the pause button on parenting while you try to figure out what to do. You’ve got to keep going, every day, and figure it out as you go along.

And so, when I first became a widowed parent, I went looking for the book that would tell me what to do. And I found that it doesn’t exist. So, I decided to go out and put together the pieces of this puzzle. And — most importantly – to share what I was learning with other widowed parents.

Last November, during Children’s Grief Awareness Month, I launched The Widowed Parent Podcast. I talk to people who have been down this path. People who write books and who practice in the field. I interview them for the podcast — and bring listeners the best advice and information I can find. They can listen in right from their phone as they go about their day. Or even on Alexa as they fix dinner.

Hosting the podcast has been incredibly rewarding for me. I’ve learned so much about widowed parenting, and about myself. And I’ve heard from fellow widowed parents that they have, too. In fact, this is the listener feedback that I’m most proud of:

“I’ve listened to all of them and look forward to it each week. It’s real and relevant intermixed with a sense of hope for the future.”

Real. Relevant. A sense of hope. That’s exactly what I’m going for.

And it’s exactly what I learned when my husband died, and I became someone who turns grief into action.

This piece was originally published on Thrive Global.

You don't have to listen to the hospice chaplain when he tells you that making remarks at your husband's funeral will be too hard

"You don't want to make things harder on yourself than they already are," said the kind and well-meaning hospice chaplain.

We were in my living room at our first -- and, I should say, last -- meeting. My terminally ill husband was in the other room, probably with one of the many friends who came to keep him company and give me a break from round-the-clock caregiving.

I had mentioned to the chaplain my intention to speak at my husband's funeral. We didn't know when it would be, but he had been diagnosed with a 13-month-average-lifespan brain cancer 6 or 7 months earlier, and had recently become a hospice patient. I had been kicking around what I wanted to say at his funeral for a while at that point – primarily when I went walking.

in college I used to compose papers in my head while walking from the US capitol to the lincoln memorial (and back). I could never have imagined that 20+ years later I’d fall back on that method — walking — to compose remarks for my 44-year-old husband’s funeral.

in college I used to compose papers in my head while walking from the US capitol to the lincoln memorial (and back). I could never have imagined that 20+ years later I’d fall back on that method — walking — to compose remarks for my 44-year-old husband’s funeral.

I should say, as an aside, that walking tends to be when I do my clearest thinking. It's when I wrote my best papers in college -- I'd head out on a couple-hour walk from the Capitol to the Lincoln Memorial and back, and by the time I returned, I had composed a 5 or 10 page paper in my head. I just had to sit down and type it out.

So, I had been walking around the neighborhood composing funeral remarks in my head. That doesn’t sound weird to me these days, as I type it now … but I’m sure back when I was composing college papers on walks, I would never have imagined that someday I’d be taking that same approach when preparing to eulogize my 44-year-old husband.

I was 99% sure I wanted to do it. But, when the hospice chaplain tried to talk me out of it, I second-guessed myself. I mean, here was a guy who knew a lot more about death that I did. Maybe he knew something I didn’t? Maybe there was something I didn’t know about funerals that would make my plan impossible. Or unwise. Maybe I needed to listen to the “expert?”

I don’t know why he gave the advice he did. I suppose he typically worked with widows much older than I; maybe they don’t often make remarks at their husbands’ funerals. Maybe he just thought, “here’s this poor woman with two young kids, she doesn’t need one more thing on her plate.”

But, he didn’t know me. He didn’t know that I’d been blogging on Caringbridge since the beginning of my husband’s illness, sharing our journey with family and friends near and far. That 78 posts and 29,000 site visits later, I needed to speak to the people who’d been supporting us for so long. I needed to reflect on my husband’s life, and I needed to thank our community for their role in the hardest time of our family’s life.

And so, I thanked the chaplain for visiting, and we wound up the conversation. I was pretty sure I was going to ignore his advice, but a little part of me did keep wondering what this expert knew that I didn’t.

I’m proud to report that I did make remarks at my husband’s funeral. Parts of it I had been carrying around in my head for months, turning over ideas and refining wording at every chance I got. Parts of it came together in the final days before the funeral. All of it I was satisfied with; even as I re-read it now, 3 years later, I wouldn’t change a word.

Mostly, I am satisfied that I trusted myself on this one, and didn’t let the hospice chaplain talk me out of what I knew to be the right decision for me.

Why the simple question “how are you?” would send me into an existential tailspin

It seems like a simple question. Uttered, often, without thought. A greeting, almost.

“Hey, how are you?”

“Fine, how are you?”

“Fine, thanks.”

Me, with my husband shortly before he went on hospice. (Photo courtesy Rebecca ort photography)

Me, with my husband shortly before he went on hospice. (Photo courtesy Rebecca ort photography)

And then everyone goes about their day.

Except, when your 44-year-old husband has brain cancer, it’s not such a simple question.

The question might come at school pickup. It might come by text; it might come from a neighbor or friend stopping by with dinner; it might come on the sidelines of the soccer field.

Getting this question – always from someone sincere and well-meaning, I should say – would cause fits of uncertainty in me.

You see, I find it an impossible question. It requires a series of split-second calculations:

Who is asking? Do they really want to know, or are they just being polite?

How much do they already know? If I were to even begin to answer, how much context do I need to give? Are they interested in summary-level status, or the details of the latest medical news?

Am I even interested in telling this person how I really and truly am?

And anyway, how am I? Can I even answer that for myself? At any given moment I might have multiple answers that are all true. I mean, on one level, I might be fine. Or even good. I might not have a headache and I might have eaten recently, for example. But on another whole level – say, the existential level – my whole life is falling apart before my eyes. So, on that level, I’m the exact opposite of “fine.”

More often than not, all these thoughts would swirl in my head for a fraction of a second, I’d sigh and give up, and out of my mouth would come: “fine.” Which was neither helpful nor accurate, but it was all I could muster.

And I’d miss a chance to connect with someone who really did care, and really did want to help.

Sheryl Sandberg, in her book Option B, talks about learning after losing her husband that “how are you today?” is a much more manageable question. I agree, and I try to stick with this when speaking with someone I that know is going through a rough situation.

Generally speaking, I’ve been trying, since my experience with my husband’s terminal illness, not to default to “how are you” as a greeting. “Good to see you,” “what’s happening?” or “what’s new?” are all great options. I don’t always remember, but I always hope to.

And, I am happy to report that, if you run into me today and ask “how are you,” I will answer “fine.” Maybe even “good” or “great,” depending on the day. No existential tail-spinning required.

How my family turns grief into action

Megan (then age 8) and her dad shortly before he went on hospice (September 2015). Photo courtesy Rebecca Ort photography.

Megan (then age 8) and her dad shortly before he went on hospice (September 2015). Photo courtesy Rebecca Ort photography.

One day after school my 10-year-old said, “Mom, when I grow up, I want to help cure brain cancer.”

We weren’t talking about cancer. Or careers. We were talking about snack and homework.

“That sounds great,” I replied. “What did you have in mind? Do you want to be a doctor, a nurse, a researcher?”

“No,” Megan said. “I want to use my art skills to raise money for the research others are doing.”

Just ten months earlier her dad — my husband — had died of brain cancer. It was glioblastoma, the same type that Teddy Kennedy, Beau Biden, and more recently John McCain, had died of. Megan had been struggling with our loss. In her seemingly offhand comment, we found a way to help her turn her grief into action.

“You know,” I started. “You don’t necessarily have to wait until you’re grown up to help. You could do something smaller now, and raise a little money for the research Dr. Cobbs is doing.”

Dr. Charles Cobbs, of the Ben and Catherine Ivy Center for Advanced Brain Tumor Treatment in Seattle, was my late husband’s doctor. He is leading exciting and critical research into some viral causes of glioblastoma.

Megan had been wanting to have a table at her school’s upcoming St. Nick fair, but didn’t have any ideas of what to sell. “Maybe I could make Christmas cards and sell them, and give the money to Dr. Cobbs,” she said. She ran off to her room and got to work. An hour later, she was back with a half-dozen designs — and looking to me to figure out how to get them printed, packaged, and ready to sell.

We were able to donate $500 from that initial effort, and Megan’s Cards for Cancer was born. We decided to put up a little web site and have her make some note cards and thank you cards so we didn’t have to wait a whole year to do it again.

Working with my daughter, now 12, on Megan’s Cards came at a great time for me, too. It was a time when I was also struggling. My head was all over the place, and I was having difficulty focusing. Sitting down and saying to myself, “I need to figure out how to build a web site, because this project is helping Megan with her grief,” was surprisingly useful to me. It forced me to focus. I was turning my grief into action. And it was helping both of us.

Just last week we crossed the three-year mark since losing my husband, Dennis. Three years he’s been gone; three years I’ve been trying to pick up the pieces; two years we’ve been raising money through Megan’s Cards. And, to date, we’ve been able to donate over $5,000 to brain cancer research. My goal is to get to $44,000, in honor of his 44 years.

As Megan said when she was ten, “I want to give money for research because I don’t want any other families to go through all of the sad times like my family did.” I’m so proud of her and how’s she’s turning her grief into action.

Last September, I hosted a Biden Cancer Community Summit for cancer widows and their families to turn their grief into action, too. Over 50 key players made commitments to the Biden Cancer Initiative to take action that would help advance cancer research, patient care, and more. One of these commitments — Take Action Against Cancer — grew directly from my experience turning grief into action in my family.

If your family has been widowed by cancer, you can join us for the first-ever Take Action Against Cancer Day of Service and turn your grief into action, too. It’s happening the weekend before February 4, which is World Cancer Day. It’s a way to give back while having fun with your friends and family. Or, if you want quick-and-easy, there are a couple of online options, too.

The important thing is to do something — anything — to turn your grief into action. As Adam Grant said, “When you lose someone who is very close to you, you can do good in that person’s name and it becomes an extension of their life. It becomes part of their legacy.”

My family has certainly found this to be true. We hope yours will, too.