Category Archives: caregiver

When the fog lifts.

Four years, four months, and fourteen days. [Queue Sinead]

Statistically speaking, he isn’t supposed to be here.

For much of the last year or so, I’ve lived in a state of survival. Life became segmented and cyclical, quite literally living from scan to scan. Holding my breath at each appointment, sighing out for ten weeks, and repeating again.

Every holiday, birthday, and milestone event bittersweet. Desperately trying to enjoy the moment, collect the memories, and set aside the sorrow.

Even when the treatments have been working, keeping the cancer stable or knocking it back a bit, I’ve lived within an ever-present uncertainty of tomorrow. Not the ‘anyone could get hit by a bus’ uncertainty. Rather, the unpredictability of living with a disease that can be so silent and yet so volatile. Lung cancer can quite literally change overnight, I’ve seen it happen to far too many.

Two significant events happened at the end of last year that created a shift. On the way to daycare one morning, I was feeling increasingly overwhelmed and stressed to the degree that if I could crawl out of my own skin, I would have. There was no triggering event, it’s just the way I felt…and it was happening on a regular basis. I became more agitated as I began to anticipate the usual morning whining and asks for snacks from the back seat.  Instead, I heard singing. Finley sang for the rest of the car ride. I realized then that somewhere in all of this, I had gotten lost in the darkness of it all.

The other remarkable (more accurately, unremarkable) event? Remission. That’s right, Jeff’s doctor used the good ‘r’ word. Never in a million years (or 4 years) did we dream this would happen. For caregivers dealing constantly with our own turmoil of the illness, a time of self-realization and relief from active disease is a blessing like no other.

I feel like I can actively participate in life;  a life I had, but lost sight of. I am engaged more than ever in advocacy, I joined a patient/caregiver advisory board with the American Lung Association and I spoke at my first lung cancer conference just last week. That’s something I’ve wanted to do for several years. I’m also going back to school to learn about IT (I’m the only ‘adult’ student and sole female in class, but I do love it) and I’m becoming more active in our community (say hello to the newest Lakeside Neighborhood Board member, baby!). Looking a bit further into the future, making plans that extend beyond a three month timeframe seems safer than it has in the past. I can even imagine us in Ireland, somewhere we’ve wanted to go together since we first met. And maybe we’ll buy a new house some day, or build one, or tackle a renovation together (not like hard labor or anything, just picking out the drawer pulls and light fixtures). The dreams are endless. Now that the fog has lifted.

Much love and much hope! xo!

 

 

 

 

Advertisements

There are no words.

Today was one of those days that I couldn’t find the right words. Or any words really. Jeff and I entered the funeral home together. It was the first time I would be meeting her. We were pen pals of sorts, trading the occasional email and blog post comments. We shared a bond; a story of two couples working for the same company with blended families touched by cancer.

Her name is Susan and she was our friend, support, and shining star of hope.

We looked at her pictures and read the dozens upon dozens of cards sent to her throughout her fight. The line to see her was long. We saw an old friend exiting the receiving line and I lost it. I couldn’t get a word out.

When I pulled it together, I looked up and saw Susan’s husband standing to the left of her casket, her family lined up next to him. This image will forever be in my mind. I found myself staring into another family’s version of exactly what we are fighting so hard to avoid. I hugged Susan’s husband tight. And again, could not think of how to articulate everything I wanted to say, something really meaningful and comforting from one caregiver/spouse/parent to another. And so he said it for me, “There are no words.”

Susan has been inspirational in our journey. She’s emerged countless times from insurmountable challenges, and that has given us strength to believe we can do the same.

Losing Susan does not mean losing hope. That’s not what she would want us to walk away with. So instead we walk away reminded that there’s a plan. And that part of the plan is to squeeze every last ounce out of this life. And to do everything with love and kindness. That’s what she did.

Rest in peace, our beautiful friend.

 

 

 

 

To the caregivers out there.

You are okay. That’s what I need someone to remind me everyday, or every hour for that matter. And I’m saying this as the caregiver of a lung cancer patient (aka wife of a really cool, sweet, funny, accepting, awesome ginger guy who is still working on his dance moves from the ’90s) who for the most part is doing remarkably well. I feel guilty. Don’t I have it easy compared to others caregivers out there? I should be counting my blessings. And I am, I mean I do realize how blessed we are. Truly blessed.

To say I am more in touch today with how fortunate my family is post-lung cancer is an understatement. So what’s my deal? Why can’t I just live in the moment and be grateful? Be happy? As hard as I try, for as many therapy sessions as I go to and yoga classes I take, I cannot make the daily worries and stresses of this illness go away, not completely. Not even for a full 24 hours (or like 2 hours). My mind so desperately tries to prepare me for the unspeakable, forcing me to step through different scenarios. This makes for very painful moments from time to time.

A friend of mine asked me tonight, “What’s the plan? What are the doctors telling you the plan is for Jeff?” No one has asked me that in a really long time. And so I stopped for a second. The plan is to keep going like this; scans every 8-10 weeks, treatment changes as-needed, possibly clinical trials, whatever is takes to keep the cancer at bay. This is the plan, indefinitely. Or until someone finds a cure.

Recently, I have felt as if my ability (or inability as it seems) to handle Jeff’s illness, the feelings that go along with it, the scanxiety, just day to day living, has changed. Sometimes I think it’s impossible to carry all of this and continue to function like a normal human being. I think for many of us, especially those with young families, we want to do it all. To take this thing on with grace, always with a smile. Sometimes it’s just not realistic, in fact it’s asking too much of ourselves.

So when someone asks you “How are you doing it?” or tells you how impressed they are by your strength, try not to just brush it off. Do not respond with, “I have no choice” or “You would do the same thing.” Take it in for a moment and give yourself some credit. Not everyone can do the caregiver thing. And we do have a choice, we choose to care for our loved ones. Sadly, not everyone in this situation chooses the same road. Whether you’re having a day of grace, of sadness, anger or joy, or utter helplessness, it’s okay. You are okay right where you are.

Much love and much hope. xo.