Jump to content
Sign in to follow this  
  • entries
  • comments
  • views

About this blog

Welcome to LUNGevity's Caregiver-focused blog! I'm your host, Danielle. I am so happy to meet you!

We will travel this "caregiving" road together, and learn from each other as we go. LUNGevity and I will host monthly Twitter chats under the hashtag #LCCaregiver. This blog will be a forum to introduce and analyze topics of Caregiver concern, and the chats will be a safe space for discovery and sharing. Everyone is welcome. Bring a friend! Let's get started! It is my sincere hope that this project will be useful and inspirational!

P.S. Make sure you are following @LUNGevity and @Actorielle (me) over on Twitter!


Entries in this blog


Part 3: Resources

One word that is perhaps overused in the professional cancer services field is a word that is also overused in many other humanitarian fields: “resource.” Sometimes, it seems like a catch-all. What do you guys offer? We offer resources! Hm.

What does “resource” mean to you?

To me, it means something that is drawn from by someone in need of help. Something that is stocked and available to give concrete assistance in a particular situation, and is either infinite in itself, or can be replenished.

A replenishable replenisher, if you will!

When I see fellow caregivers ask other fellow caregivers “what can I do? How can I help you?,” the answer is always the same. It’s an answer we see every time we ask the #LCCaregiver Twitter chat community the same question: what can your CG family do for you? What is the best way we can be a resource for each other? What can we do for you that is not already being done for you?

The answer is so profoundly simple: be there. Listen. Lend a supportive ear. Be a safe space for venting. Sympathize.

As much as we all sincerely want to “do more” or “be more” for those who are in our same situation, it seems as though the most important release we can expect from within the “pack” is the one thing we can’t really get from anyone outside the “pack:” understanding. As with any other experience in life, the bond formed when we realize that someone sincerely feels the same way we are feeling in response to the same stimulus is both profound and instant.

Only our fellow CGs “get” how we have time to do the shopping and the laundry, but do not have the time to answer the texts or get to the post office (or vice versa), without requiring an accounting of our hours. I swear, my dear non-CG friends and family who may see this, that I know you do not require timesheets from me, but sometimes it feels as if you do. Meanwhile, people who have undertaken a similar journey are not surprised at all when I explain that the day somehow did not actually contain 24 hours as promised on the packaging.

As useful (and awesome!) as it would be to live in a place where we could all physically pitch in for our fellow carers (a caregiving co-op of trusted co-carers? Say that five times fast…), it is MORE than enough to lend a shoulder and an “I hear you.” Your support is enough. YOU are enough. Something you have to say could make all the difference in the world for a new or overwhelmed caregiver.

So: the number one resource that caregivers have are fellow caregivers. Find them. Reach out. You’re in the right place to start, here on the LCSC: use the Caregivers message board.

Use the “LUNGevity Caregivers” Facebook group here: http://www.facebook.com/groups/LungCancerCaregivers/

Come find a buddy in the LifeLine program here: http://www.lungevity.org/for-patients-caregivers/support-services/peer-to-peer-mentoring/lungevity-lifeline.

Come to our monthly #LCCaregiver Twitter chats! :-D 

If you have been doing this a while, find someone who is new to the situation. Someone who needs to be told “it’s okay. I promise. You will find the new normal. It will become routine.

I’m here.”


Part 2: Resets

The beauty of the Sunday afternoon chores, in addition to creating a zen moment before winding up for the assaults of phone calls and emails and appointments that can come between 9am Monday and 5pm Friday, is that they serve as a sort of reset. A blessed, welcome reset. Whatever was undone from the week before is still undone (LOL!), but nobody died because of it. The cans of cat food that didn’t get moved from the kitchen counter to the bin in the pantry? Not lethal, it turns out. I didn’t have it in me, Wednesday evening, to move those cans to the bin. I just didn’t. One or two or three of us in this house had had a doctor visit, or there was a pile of paperwork with a deadline, and it was all we could do to three-musketeer (three-stooge?) through that particular endeavor before we collapsed.

But, now, it’s Sunday afternoon. Tomorrow is a new start, with a new list of responsibilities and schedules, sure, but for now, I can luxuriate in moving those cans of cat food from this counter to that bin. That’s all that’s required of me in this moment. It’s delicious. It’s delicious, and it’s necessary. I am angry at cancer for so many things, but oddly thankful for this lesson that the small chore in the right time can be a way to wipe a slate clean before moving forward. A way to acknowledge what was done, forgive what wasn’t, laugh about it, and start from zero once again.

And, if I try really hard, maybe I’ll even commit to that actual hour of work in the morning, instead of getting it swept off the board. Maybe I’ll be that organized. Maybe I’ll structure the day around what needs to get done, and finish the necessities with verve and focus, and by virtue of that organization I might have several hours to give to one of those back-burner projects.

And, if I don’t, that’s okay, too. I will have replaced the light bulbs, and wound the clock, and moved the cat food from the counter to the bin. That’s a lot, and that’s enough.


Part 1: Routines

Are you a person who likes routines? Or are you a person who likes to play things by ear, deciding in the moment?

See: I had always thought I was the latter. I am not the most organized person in the world (sorry, family!), except in those moments when I absolutely have to be. So, it’s always seemed easier to me to make plans on the fly, at the last practicable moment.

Or, so I thought.

Funny thing about lung cancer: it’s a “canceller.”

A what?

A canceller.

Picture the big, important businessperson of cliché-fame telling her assistant to cancel all her appointments. All her phone calls. Something else has come up. Something bigger. Something that has to be handled NOW.

Well, that’s a canceller. Lung cancer is one of them.

It’s the feeling you get when you realize you don’t have your wallet. It’s the huge spider that’s headed for your foot that makes you not care that you’re dropping your pile of clean laundry. It’s the face you make when the grocery store is out of the one item you really needed for dinner (seriously. The ONE thing. The thing that made you get up and go to the store. Really?!).

Only, worse. Much worse.

I’m not saying anything new to you. If you’re here, it’s because lung cancer has reared its ugly head in your life already. I am so sorry for that. I do not mean to dwell in that place.

Rather, I want to talk about the thing that happens after the “canceller” throws its wrench in your plans.

It turns out, much to my amusement and chagrin, that we…well, we try and find routine.

If I’ve said one thing to new caregivers more often than any other thing, it’s: “don’t worry: it’s terrifying now, but eventually it will become routine. No less terrifying, but it will become routine. You’ll find it.”

Here’s another phrase I am certain you have heard: “the new normal.” “Our new normal.” “This is our new normal,” “we’re finding our new normal,” etc. See: even in the face of the canceller, we scramble to assemble pieces of routine to create a new façade of having planned at least SOME of what is going on. We crave a normal. And, what else is “normal” if not going about some form of daily grind, fairly certain about at least a majority of the events to happen in any given day?

Trust me, I’m the kind of person who never would have thought she found comfort in routine. But, I do. And chances are, you do, too. The very nature of the “canceller” is that it is the event in your day that you never expected, never had written in your planner, and dealing with it requires a tightrope walk between the planned (appointments) and the unplanned (results).

Like so many other perspectives and perceptions, becoming a caregiver cruelly removes this inherent ability we all have: to subconsciously rely on routines for safety, while all the while cavalierly denying the need for routine, thinking of it instead as a boring or stuffy way to live. Ohhh how foolish I was! I used to brag about not being a creature of routine: I craved spontaneity and I sought ways to keep the days interesting. I thought that the difference between getting coffee at the same shop in the morning on some days and in the afternoons on other days would save me from ennui. I really thought I had this all figured out.

But then, when mom was diagnosed and we were figuring out our new roles and jobs and needs and priorities, I was left aghast at how I was suddenly and sharply yearning to wake up at the same time the next morning and get coffee at the same place and take the same grueling hours to get through my same inbox. I didn’t want to deal with oncology appointments and scan schedules and treatment research and insurance verifications. Who does? That grass on the other side was urgently bright green, and all I wanted was the down-to-the-minute synchronism of the day before the diagnosis. Who wouldn’t?

Our routines are also where we as caregivers tend to notice our sacrifices in the clearest terms. “Okay—I can run these errands today and still get in about three hours of my own paperwork.” “Okay, well, that took longer than expected, and I didn’t have a good dinner planned, and that’s on me, my bad, so, well, I guess I can scrunch up that three hours into one hour and just do my best to get it all done.” “Well, okay. I really didn’t know the kitchen would take that long to clean. I’ll try to get my stuff done tomorrow.” And so on and so forth. It occurs to me to assure you that I am not complaining: I would never. Caregiving is a choice I made, and one I feel blessed to be able to make. I am just trying to give voice to what I have learned is a common but unspoken experience in the journey. The lonely hours I used to begrudge giving to email and other necessary evils are now hours of peace and quiet that I miss.

How often, as a caregiver, have you been told to “take care of yourself first?” It’s probably a piece of advice you’ve heard many times, all from well-meaning folks: other experienced caregivers, or perhaps loved ones who are worried about you. I maintain that taking care of yourself is often antithetical to the idea of caregiving, but putting that aside for the moment, notice: so much of what we really want for self-care is actually just a return to routine. Time to get to a salon. Time to take on an organization project at home. Time to bake. Time to knit. Time to do any number of mundane things that got left on the back burner when lung cancer rang the doorbell (out of nowhere. Rude).

For me, Sunday afternoons are the times when I am most aware of this juxtaposition. On Sunday afternoons (or, on holiday weekends like last week, Monday afternoons!), I try and take the time to do the small things that sit undone in the busy-ness of business hours: change dead lightbulbs, refill the coffee pod carousel, wind the analog clock. Odds and ends. It is meditative work. It’s repetitive. It’s calming. It needs doing, but I find such joy in doing it.


Routine is a teddy bear that gets taken from us, and we spend much of the process of coping with cancer and caregiving trying to pick the perfect replacement teddy bear. It has to be one we can afford, and it has to be one we can fit in our arms with everything else we must carry.



Hello, my dear friends!

I. Have. Missed. You!

It is so tempting, in my relationship with caregiving, to take on blame. Blame myself for this or that. Plans didn’t go off accordingly? It’s my fault. Time got away from me without my control? Oh, that’s my fault, too. Sign me up!

Since my last post, our “best laid plans” were thrown out the window. Forcefully. To be totally real with you, my friends, I had wanted so badly to post about ALL THE HOPE in May. I wanted to fill your inboxes with notifications that there was a new post here every day. I wanted to fill your “Caregiver Quiver” (ooooh, I like that, I’m gonna use that!) with so many HOPE arrows that you would have a weapon to combat every moment of hopelessness.

After all, May was Lung Cancer Hope Month (thanks to LUNGevity!). That’s huge. For a diagnosis that used to be like a flipped hourglass, any dose of HOPE can make the difference between having or losing the will to fight. We who spend every day in the LC community know there is SO MUCH HOPE, and yet Society At Large still sees the hourglass.

So: I had wanted so badly to fill your May with links and resources and information on the newest and best stories and breakthroughs and answers. That was my “best laid plan.”

But then, my dad ended up in the hospital for the entire month of May. My mom is my LC patient, but my dad has his own chronic health issues that require frequent hospital stays.

You know the darndest thing about hospital stays? They aren’t always marked out in my day-planner! Shoot. Go figure!

So. There went May. And I have been tossing and turning and being grumpy and angsty about letting you guys down. I went and pulled the tweets from our last #LCCaregiver twitter chat, when we talked about HOPE and how we could spread hope and share hope and how we as caregivers could encourage our loved ones to have ALL THE HOPE. I was in a real funk, guys. I really felt like I had lost the chance to really make Lung Cancer Hope Month “count.”

Then, it hit me…

Do you remember what we talked about in that chat? Because I do, and I will NEVER, ever forget it.

We talked about HOPE, and sources of hope, and we said: this community is our source of hope. This group of souls going through the same thing is our source of hope. We feel hopeful by being there for each other, thick and thin.

And my angsty funk? My trying to stick to plans? That was all making me feel hopeLESS. I was acting and talking like a person who felt hopeLESS.

No more. I reject that trap. You are my family, and I am yours. I don’t need deadlines and set schedules to be there for you, and you don’t need that to be there for me! The most relieved I have felt along this entire walk with lung cancer have been the times when I let go of trying to keep to an ironclad schedule, and have instead followed my gut and allowed myself to really be present in the current moment and what the moment needed.

I want to be present for you, and I know you are present for me. We are all in this together.

Now, don’t get me wrong: I DO want to catch up and write some posts about ASCO (the major oncology conference that just took place in Chicago); about recent drug approvals; about ways caregivers can find peace. And I will. But I also know I won’t be letting you down.

Let’s chat!

TONIGHT (Wednesday) at 8pm ET, let’s chat about the support network you keep around you. Let’s talk about what you need, where you feel most confident and least confident, and what you can do to help your support system help YOU. This is an ongoing conversation, believe me; let’s all grab our tea and put on our slippers and come together to follow #LCCaregiver tonight. Questions are below. I hope to “see” you there! Bring a friend; all are welcome.

Love always,


#LCCaregiver Twitter chat, tonight (Wednesday) at 8:00PM ET. Follow #LCCaregiver on Twitter to participate!

T1: Who do you consider your “support system?”

T2: What are the strengths in your support system?

T3: What are the gaps or weaknesses in your support system?

T4: What has been the hardest thing to ask someone? What kind of help is hard to find?

T5: Would you rather people ask what you need, or just volunteer specific help?

T6: What resources or tools would you like to have in your Caregiver Quiver? (sorry, can’t help it, I really love that phrase now)

(If you’ve never used the LUNGevity Navigator App, just wait: I’ll tell you about it tonight!)

T7: Are there local resources for caregivers where you live? What local resources would be cool to create?

T8: What can the nonprofit orgs like LUNGevity do for you? (have you checked out LUNGevity’s awesome caregiver resource center?!)

T9: What can your fellow caregivers best do to support you from afar?




Hello, my friends!

I HOPE, wherever you are, that you are having a beautiful Spring!

I HOPE, whatever you are up against, that you are finding support and peace in your endeavors.

I HOPE, however you need, that you are finding the time to create room for yourself in your busy schedule.

I HOPE, above all, that you and yours are doing well.

Thanks to #LUNGevity, May is officially “Lung Cancer HOPE Month.” This particular awareness campaign places a much-needed focus on all there is to be HOPEful about in the #lungcancer world. To that end, we will be talking frequently this month about what HOPE looks like; what it feels like; what it means to you and to your loved ones involved in this lung cancer experience.

Also: I had the extreme honor of attending LUNGevity’s national HOPE Summit this past weekend. For the first time, the Summit featured a separate day of sessions designed for Caregivers: the “COPE” Summit.

My suitcase is still in the hall; I am still sore, sleepy, and overwhelmed: in the MOST productive and phenomenal way possible! If you have not yet attended a regional or national HOPE Summit, I could not possibly recommend it more wholeheartedly. The experience is hard to explain, other than saying it is a near-necessity for anyone touched by lung cancer: there is nothing more uplifting than being surrounded by fellow survivors, Caregivers, experts, and researchers who are ALL working through the same difficulties to reach the same goals. The sense of community is intoxicating, and the sense of forward progress in policy and knowledge is inspiring. It is part conference, part congregation, part school, part party, part reunion, part group therapy, and ALL heart.

Thank-you, LUNGevity!!!

I had briefly considered writing a novel-length post that would recap all of the Caregiver-specific takeaways from the weekend, but then I realized that that would be unfair: unfair to you, my friend, having to read all of that at once, and unfair to the extent of the material itself. I have plenty of talking points from the conference to share with you, all about HOPE, and since this is HOPE month…you see where I am going with this…

Stay! Tuned!

Let’s start conversations! Let’s put our heads together and be honest and be open and reach out. I would be honored to hear from you!

To kick off this month-long conversation, our regular monthly #LCCaregiver Twitter chat will be tonight (Wednesday, 5/3) at 8pmET. You know the drill: follow the hashtag #LCCaregiver to participate. (I highly recommend using a chatroom service such as tchat.io as well. Just put tchat.io in your address bar, and enter #LCCaregiver when it asks for a hashtag).

If you are not on Twitter, please join! The lung cancer support community on Twitter is large, active, and incredibly helpful. There is no need to face any of this alone! The message boards and blogs here on LCSC are profoundly comforting, and the Twitter presence of fellow advocates is a meaningful complement.

For tonight’s chat, we’ll be focusing on breaking down a large question: what is the role of Caregivers in spreading and advocating for HOPE in lung cancer? One major thought I’ve had since the HOPE Summit—one major takeaway I will explain in more depth later—is that HOPE can be complicated. It can be especially complicated when the Caregiver is taking the natural backup role: we are not the patient. What are our boundaries? When should we captain the HOPE ship? When should we yield? Is it a different skill to help our loved ones be HOPEful than it is to help spread HOPE in the wider community?

Think on that. The specific topics I’ll be asking about tonight are listed below.

I can’t wait to “see” you tonight! Bring your popcorn and a friend (or two)!

Love and thanks,


Topics for #LCCaregiver Twitter Chat 5/3

What does HOPE look like to you?

What brings you HOPE?

What does HOPE look like in the broader cancer community?

What have you done to bring HOPE to your loved one?

What can we, as Caregivers, do to bring HOPE to our loved one?

Is there something that we, as Caregivers, can do to bring HOPE to our loved ones with cancer?

What specific actions can Caregivers take to support Lung Cancer HOPE Month?

What actions are appropriate for us to take as Caregivers to promote HOPE?

What do we do if we have different ideas about #HOPE than our loved ones?

may chat graphic.jpg


"Boy, what a week!"
...How many of you know that phrase by heart? All of you! (And not always starting with such an innocent word as "boy...")
Well, that's been my week. And I know it probably has been for you, too.

Just by way of illustration: I went to the grocery store a week ago. On the day of my mom's most recent treatment. Mom's treatment stays usually last about 6 hours, so the day is toast by the time we get home, and we are "pooped."

So, back to the groceries.
I. Just. Now. Finished. Unloading. The. Car.

Don't get me wrong: I got the precious perishables out as soon as we went inside.
But the rest? 
It slept in my car through a week of hot-cold-stormy-sunny. Once we had the front door locked, the outside world vanished.

This week progressed similarly for the rest of our responsibilities, too: we felt under the weather (literally and figuratively), so the ticks on the tick-off list just didn't get ticked. 

I am absolutely sure that each of you knows that feeling. That's one of the safety nets of this community: nobody knows what it's like until they've been there. Not really. That's what helps to build our Caregiver community and our LC community. That's our familial bond. 

But, like most weapons, it can be a sword or a shield. Sometimes, that bond can also be a burned bridge.

Have you ever been challenged by another Caregiver? Asked to defend why you chose a particular approach for your loved one? Asked why you haven't done this or tried that?

I have. And I bet you have, too.
It hurts. 
Not only does it imply that one approach is better (which is condescending), but such criticism places an additional burden on already overwhelmed shoulders: explain this to me! Justify this to me! Take the time to research my position!

Even as we build our bonds as Caregivers, and even as we acknowledge the struggle that unites us, we must always remember that every family is different. Every patient has different needs, so every Caregiver must respond to THAT patient, OUR patient, rather than to some "ideal" formula of caregiving.
Want a live-in aide? Hire one. Don't? Then don't. Same with choosing treatment plans, listening to holistic practitioners, which tasks to assign friends and family, which information to share with whom, how to make the calendar...anything.

I'm as guilty of this as anyone, but I try to consistently remind myself: we are on the same journey, but along different paths. And that's okay.

I would be honored if you would join us at our next monthly #LCCaregiver Twitter chat: tomorrow, Wednesday 4/5, at 8pm ET. Just follow #LCCaregiver to participate. Everyone is welcome. Bring a friend. Tell a fellow Caregiver. Have your loved ones chat alongside you.
I am so excited to share with and learn from you.
The questions and topics are below, so that you may review them before we "meet" tomorrow night.
Love and thanks,

Did you find support among other caregivers or do/did you find it more challenging? Why? 

Have you experienced feelings of guilt or judgement placed upon you by other #LCCaregivers?

What are some of the tensions that can erupt between carers?

What are the different tensions between #LCCaregivers in families vs in support groups?

How can a new #LCCaregiver prevent caregiver conflict and competition?

Are there any tips or resources that can help an #LCCaregiver dealing with competition and judgement?



Taking Care of You

"Why don't you join us?"
"Can you come? Want to go?"

"I...hope to?"
"I...wish to?"
"I'll check my schedule."
"I will try..."
"I can't. Thanks, though! Maybe next time!"

Doesn't this sound like the common Caregiver script?
I know it does in our house.
Invitations turned down and plans not made.
The secret is:
Even if I thought I could go to the event, I wouldn't want to.
Even when I think the potential plans are logistically possible, I always feel as though I have increased the chances of a setback or emergency just by operation of being absent. It only rains when you leave your umbrella at home. Your phone only rings when it's at the bottom of your bag.

Being absent seems to be the antithesis of being helpful, and being a Caregiver at any level of involvement means being helpful, right? Present. Aware.
If I am neither present nor aware, how can I be helpful? It cuts straight to the "identity" of "Caregiver."

No human can be in two places at once. We all know this.
...But it doesn't mean we don't try it anyway. We teleconference, telecommute, telephone. We Skype and FaceTime into doctor appointments. We do research late at night, elsewhere on the internet and in forums like this one, only to call our loved one's doctor back long-distance the next day to ask more questions.
So, in the moments when we are not present in any way, actual or wired, how are we being *helpful* in any way?
We make ourselves available even when we aren't actually available, so why would we expect any diminution in our commitment to be totally available in lieu of leisure time?
No time is disposable. If anything teaches us the preciousness of time, it's cancer. Brutally and unmistakably. So...what is this "leisure time" you speak of?

I do not like to miss my mom's appointments. That's my Caregiver profile. (And we will talk about the insidious nature of competition and advice between and among Caregivers later this year). Basically, every situation is different just as every family dynamic is different. Patients and Caregivers are people. No one approach works easily as well for one person as for anyone else. (This is the same as what the oncologists tell you about treatment, so it only makes sense, I suppose).
Because I am the kind of Caregiver who balks at missing appointments, my experience is peppered with unmade plans and unmet deadlines. But every Caregiver at any distance or availability feels the same: the waiting, the walking on eggshells, the wondering, the lack of certainty. It all takes an emotional toll. Don't forget: "toll" means "cost."

No Caregiver does what he or she does in order to be called a saint or a martyr. The vast majority of us are not even close to completing the to-do list, and are still way behind on everything, but just doing what we have to do. So: why is it that the support systems in place for the Caregiver always make it seem as though taking breaks is best way to operate? Why are vacations encouraged? "Why don't my well-meaning friends realize how much it hurts when they ask me if I can take time for myself?"

The bill has to be paid. The dinner has to be cooked. The Rx has to be filled. These come first. They are time-sensitive, life-sensitive concerns. They aren't the hurdles we have to jump; rather, they are the very track we run on. It seems the spa days and morning walks and movie dates--let alone vacations--become the hurdles. The extra effort. The energy mustered at the end of the day, the end of the list, if at all.
It is my personal conviction that "self-care" for a Caregiver is not necessarily feasible. Not to the extent that it is discussed and recommended.

It is said that "you can't pour from an empty vessel." But doesn't the vessel take time to refill? And pouring has to happen anyway...
It's a weak analogy.
It is also said that you can't take care of anyone if you don't take care of yourself first. Like the oxygen masks on the airplane: this is another metaphor you see in the self-care conversation quite frequently. A metaphor that is particularly painful in a lung cancer context. If someone needs the mask more than I do--literally and figuratively--I simply have to give it over first, and secure mine later.

This week, on our monthly Twitter chat, we will be discussing the idea of taking care of yourself first. Is self-care possible? Is burnout avoidable? Let's talk! 

We will also be sharing some of LUNGevity's many resources for Caregivers, such as this: http://www.lungevity.org/support-survivorship/caregiver-resource-center/caregivers-job/caregiver-fatigue.

Join us Wednesday (3/1) at 8pm EST on Twitter. Just follow #LCCaregiver to participate!

As always, I look forward to learning from you, and to coming together as a community!
The topics we will discuss are below. Take a look. Sleep on them. I am excited to hear what you have to say!

Love and thanks,


What are some of the challenges you experience as a Caregiver?

Many #LCCaregivers don't get the help they need, or they take on more than they are able to handle. Do you?

What are some common misconceptions about Caregiving/Caregivers? 

Looking back, what are some warning signs of #LCCaregiver fatigue/burnout?

How can a new #LCCaregiver prevent caregiver fatigue/burnout?

What advice can you share that may help lessen the burden of Caregiving?

Do you feel you have the time to take breaks?

Do you feel the need to take time for yourself?

Do you feel guilty when you take time for yourself?

Do you feel like less of a Caregiver when taking time for self-care?

What do you do for self-care?

LCCaregiver 030117 graphic.png


Welcome! Settle in. Get comfortable.

If you’ve joined us here, lung cancer has touched the life of someone you love, and has thereby touched your life as well. I am sorry.

Well: I am sorry you are going through this, for sure, but: I am so glad you have found us here. Excited, even. You have found a new family, and a new wealth of resources. You will not be alone in this (insert your preferred word: some say “fight,” some say “journey,” I say “process”)! 

A few words about me, so you know who you’re “talking” to: I’m 29, and I’m a full-time caregiver for my parents. My awesome mama was diagnosed with Stage IV NSCLC in March of 2015, and has been on an immunotherapy (PD-L1) clinical trial ever since. My awesome papa has other serious health issues, so we all hang out together, as a team, three stooges making the most fun we can (we’re good at that) and doing our best to keep the to-do lists at bay.

Ahhh, those to-do lists…

Ahem. I’m sorry. That’s a topic for another day!

I’m a Social Media Ambassador for LUNGevity (more info here), and a volunteer for other projects of LUNGevity and for various other lung cancer organizations. I am a full-time advocate for better lung cancer care, research, and treatment. You can find me on Twitter @Actorielle, and on Facebook at Facebook.com/Actorielle or at danielleremkuspardue.com.

Most importantly: I’m invested in YOU, in US, and in what it means to be a “Caregiver.”

I have no particularly special training, and no specialized skill set for the tasks and responsibilities of “caregiving.” Here’s the secret: none of us do. We all learn by doing. We learn as we are called upon to fulfill needs. Bridging gaps between an uncompleted chore, an unshopped grocery trip, and an unresearched new treatment. We all tend to launch (or, rather, be launched) into this lung cancer world, with differing levels of healthcare experience, and all grasping for every bit of credible information we can find. Every bit of comfort, reassurance, honesty, and…help.

That’s just it. We all begin this process needing all the help we can get. Your loved one, your patient, has his or her medical team, and has you. You, in turn, can have us. This. LUNGevity’s resources for Caregivers (start here) are vast, and practical, and vetted. You can find everything from peer-to-peer mentoring, to message boards, to an individualized app that organizes your specific lung cancer experience. However: amongst all these tools, where does that leave you, the person of the Caregiver? Where can you feel…Connected?

Here.  In addition to your family and friends and extended support network, join us here!

LUNGevity is greeting 2017 by undertaking several exciting new endeavors, including this one: a new initiative to blog and chat specifically for the Caregiver audience. It’s almost like a New Year’s Resolution!

As we explore this New Year’s Resolution together, you and I and LUNGevity, we will consider a different topic every month. I will introduce the topic here, on the blog, for your perusal. The following week, LUNGevity and I will host a chat over on Twitter, so that everyone (you, me, your family, your support network, and our entire community of fellow Caregivers) can come together to discuss, vent, learn, and grow.    

After each chat, I’ll review our conversations and post a de-briefing blog post. Where are we? What do we know now that we didn’t before? What do we need? Where can we go from here?

So: it is my great honor to invite you to our inaugural #LCCaregiver Twitter chat of 2017, to be held next week, on Wednesday, February 1st at 8pm EST: “New Year’s Resolutions for Caregivers.”

What do YOU want to say? What are YOU working on in your relationship with yourself as a Caregiver, and in your relationship with your loved one? If you have been a Caregiver for a while, what would you like to improve or change? If you are new to this role, what do you need in order to feel comfortable?

As for me, I’m still working on what that title entails. I think we all are. In fact, that one word means something different for every survivor, every family, every household, every situation. “Caregiver.” Care partner, carer, caretaker?

For me: daughter, friend, and advocate.

Join me as we walk this road together.

I am so excited to learn from you.

Love and thanks,


LCCaregiver 020117 graphic.png

Sign in to follow this