Category Archives: Family

Molly.

This morning Finley showed me his latest studio creation at daycare. His first clay sculpture. Two pieces of brown clay stuck together. Yes, it looks like what you’re thinking. He is so incredibly proud of it. I can imagine him spending his time rolling the clay, poking at it, figuring it out. For his process, his effort, his discovery, I am so proud of him. This little clay sculpture makes me smile, and giggle a bit too.

As I left Finley with his friends, I thought of Molly. How many times had she held something in her hands made by her daughters, beautiful and meaningful not because of how it looked, but because of what it represented, because of who had created it. I took pause in my moment of joy and shared that with Molly, though physically we were miles apart.

Pure joy. That was a phrase that Molly used often when we traded messages or when she commented on a post of a family picture. In true Libra-fashion, she was kind, loving, and gentle.

Molly was an October 11 baby, just like Jeff. Our families were connected by the stars and by lung cancer. Both Molly and Jeff were diagnosed in November of 2013. There were so many parallels in our stories – young children, active lifestyles, professional careers, wonderful family and friends, the list went on. With the promise of the latest in personalized cancer care, targeted therapies, there was no stopping us. In my heart, and foolishly in my mind, I believed these two would be among the elite, the few who would survive this disease.

However, in recent months Molly’s treatments began to fail her, and this past week it was clear that her time was short.

And like that, she is gone from this earth.

And now we grieve.

Our friend who stood with us at the starting line so many years ago no longer runs beside us. We will honor her with the spirit in which she lived her life, with kindness in our hearts and with nothing but gratitude for every moment of pure joy.

 

 

 

 

 

 

 

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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.

 

 

 

 

Love. Good for what Ales you.

In February of 2014 the first Ales for ALK was held, an event our dearest friends and co-workers put together to support Jeff and to provide us both with some relief from an unimaginable situation. I was in my third trimester and was desperately seeking answers and hanging on to every encouraging word from loved ones and even strangers, words of reassuring that Jeff would beat lung cancer. Or that at the very least he would be around long enough to see the birth of our baby.

Fast forward to this weekend, the third Ales for ALK was held. If you had asked me in February of 2014 if my husband would be killing it at the water pong table (Yes, we had to use water, the event was held at a public venue. And yes, when I played my hand at said water pong I drank the water because I’ve only played pong one other time and my partner told me to.) at the 3rd annual Ales for ALK, I would have said yes, but internally I would have fallen apart. If you asked me if my baby boy and his older brothers would be enjoying their dad as a ‘normal’ dad for the next 2+ years I would have cried, never fully believing that was a tangible possibility.

Since Jeff’s diagnosis (May 6th was 2.5 years!) I have applied as much control in areas of my life and my family’s life as possible. Can’t cure your husband’s cancer? Then obsessively research everything about it, for hours every week. Keep a spreadsheet of clinical trials. Check social media constantly for new cancer research articles and medical journals. Surely the cure will pop in a news feed any minute now. Curious how a softball size tumor showed up on a CT scan of your spouses lung ? Test your house for radon immediately. Consult a dowser because maybe the ground water from the lake is the culprit. Don’t microwave anything in plastic. Buy organic as much as you possibly can. Reduce dairy intake (the yogurt he’s taken in his lunches surely caused inflammation which is probably why he has cancer right?), no more cold cuts, definitely no soy, start juicing. Make sure you drink the juice immediately because the nutrients are like a new car and as soon as you drive off the lot the value degrades. Holy shit, man. This is the kind of stuff I’ve been focused on (this list of preoccupations is just the tip of the iceberg…only dark leafy greens for this cancer-fighting family by the way), thinking I was somehow regaining some control in our lives.

The only thing I’ve successfully  influenced is a steady state of stress over something I cannot control. It was being at Ales for ALK this weekend that made me realize that while we’ve made some positive lifestyle changes thanks to cancer, this thing is bigger than me and my juicer. It’s bigger than everyone who was wearing purple for Jeff this weekend too. But I’ll tell you what, we felt so much love in that beautiful sea of purple shirts. And wheher that cure shows up in my Twitter feed tomorrow or we see everyone at next year’s Ales for ALK, we’re excited about what’s possible because we know a future is possible.

 

 

 

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.

 

 

 

 

Two of these people are not like the others.

They say time flies when you’re having fun. And it’s true! Another month has sped by since I last posted and so many good, no GREAT, things have happened.

Twenty-four hours before we passed the gravy, we had an appointment with Jeff’s oncologist. Before she came in to meet with us, Jeff had to have his routine EKG to make sure his heart is still handling the new dose of Zykdia. We were in a different ‘suite’ in the cancer center and so Rafaella (our usual EKG lady) was not there. Rafaella is always on-point with her EKGs, she runs them quick and she runs them right. This time we had Julio. Julio turned out to be a doctor from Cuba who is studying to become a doctor in the U.S. He set Jeff up with all of the wires and little tape thingies, ran the EKG, and it was off the charts. That’s a good thing if you’re Bieber, not so much if you’re Jeff Clark. So, they had Julio run it again. This one looked better, but still much higher than acceptable. Tensions were rising, Jeff was getting nervous that he’d have to come off his drug. He asked Julio if he does EKGs often. I think we already knew that he did not. After the third EKG was run, Juilo threw in the towel. The doctor came in about 15 minutes later and explained to us that she did some manual calculations and the EKG was good. And not only that, the scan was also good!! Jeff is stable!!

Needless to say, Thanksgiving was great! I must admit, after all the build up leading to the scan (and wondering if the new dose was working…and ultimately if Jeff would be able to stay on the treatment), we were definitely tired. But it kind of forced us to relax and really soak up the day and the time with our family. We could finally breathe easy…well, except for the tight pants post-turkey.

In other fun news, we just had an opportunity to go to a Bills game with former NFL player, Chris Draft. He founded Team Draft, a foundation aimed at changing the face of lung cancer.

I should really say, this wasn’t only an opportunity, it was truly an experience of a lifetime for us, for Aidan and Noah, and for our friend Kelly who is also a lung cancer survivor. We had breakfast with Chris, then toured the Bill’s training room, hung out on the side line, and then watched the entire game from inside…complete with our own waitress and unlimited popcorn (Aidan was in heaven).

We had some quality time with Chris and learned about how he’s taking a different angle with his advocacy. By taking survivors to games and partnering with professional sports teams, it gives people a chance to see survivors living and enjoying life. Young or old, kids or no kids, smoker or never-smoker, this program helps others to see that lung cancer can and does happen to anyone. Knowing that 1 in 15 people are diagnosed with lung cancer and then applying that statistic to a stadium of 80,000 fans…that’s 5,000 people that have or will have lung cancer…Which brings me to his next point (and today’s blog title)…if you didn’t know Jeff or our friend Kelly, you would NEVER suspect that they both have stage IV lung cancer. They look healthy, they feel good for the most part, and they lead normal lives (in terms of what they can/can’t do because of their illness). Chris wants to push the fact that it’s because of the science and the support that Jeff and Kelly and so many others have that they are not only alive, they are thriving. And if we take a team approach, focus on the positive, and really come together, we can and will tackle lung cancer (did you like my “play” on words? …there it was again..I’m kind of a football geek now)!

Go Bills, and Go Team Draft!!!

xo.

 

And So the Story Goes. (Alternative Title: The Mind F*ck that is Lung Cancer.)

Our last post on September 8th was such a happy time. Not that we are suddenly unhappy, but we find ourselves once again presented with some challenges.

On October 2nd, we celebrated our 5 year wedding anniversary! The fact that I am able to say this is a blessing.

We didn’t really celebrate in the traditional sense of the word. In fact we didn’t at all (yet!). We spent the afternoon with doctors and nurses. Jeff had a brain MRI and the results were inconclusive as the scan had not been fully reviewed by the time of our appointment. A sizable lesion was discovered (that much they could tell us), but it was unclear if it was active cancer or cancer that had been already radiated and was swollen (total cliffhanger, thanks, doc!). During our conversation with the neurologist Jeff told him about some leg pain he’s been having. The doctor sent him for an ultrasound to rule out a blood clot. So we hauled ass from the Neurology Center to Strong and just made it. Turns out, our ultrasound lady (had to use laymen’s terms so you can keep up) was the same one we had almost 2 years ago when there was concern about a clot. Our lady has red hair so you know she’s cool. More importantly, there was no blood clot. That was good news, but the pain was still there and we didn’t know why…not so cool.

Fast forward to Monday (10/5), Jeff met with his primary doctor who ruled the leg pain a pinched nerve due to compression on his spine. Cause? Slipped disc? Maybe. Cancer? Maybe. Are you fucking kidding me? No. Jeff has his next lung scan on the 20th so his primary doctor tacked on a spinal CT for the same day.

That brings us to today (10/6). I woke up feeling good about things. Worse case scenario with the brain Jeff would have to have SRS (targeted radiation) again…but this time just on one spot. And for sure the pinched nerve is being caused by a slipped disc, I mean Jeff is going to be 44 this Sunday. It’s just old age setting in! Unfortunately, this pipe dream changed when Jeff’s neurologist called this afternoon to tell him the brain lesion is active cancer. And not only that, there are 6 additional spots (albeit tiny) that were also found on the scan. This news leads us to believe that the drug he’s on is not doing it’s work in the central nervous system anymore…so that pinched nerve may truly be due to some cancer that’s snuck in near the spinal cord.

We have a number of things to do now. Jeff will set up an appointment with the radiologist to discuss options for treating the brain mets (hopefully targeted radiation and not whole brain radiation). We will see if we can get the lung and spine scan bumped up from 10/20 to anything earlier, we don’t want to wait to see what’s going on there. In the meantime I have dusted off my research hat and am scouring Twitter (if you’ve ever wondered what to use Twitter for, it’s a wealth of knowledge when it comes to medical news), clinicaltrials.gov, and am reaching out to patients and caregivers to find out what they can tell me about what’s working for them and what sequence of drugs has yielded long lasting results. You see, for every new drug that is put into trial or approved by the FDA it gives us another option and renews our hope. These drugs are so new, however, that it’s not yet known in what order these drugs give the longest and most beneficial results. It’s also not known if some work better in combination with others, etc. So while we are forever grateful to even have options, we also want to play our hand wisely. I’m not even sure I used that card reference properly.

I wish I had a sunnier update to share. I do believe there are bright days ahead. Thanks for keeping up with us. I’ll share updates more frequently as we go sort through this. Much love and much hope. xo.

Good times.

The season is definitely starting to change. Even though we’ve experienced a serious heatwave here this past week, you can see the change in the trees and the sky. Leaves are turning and starting to fall. Autumn has always been my favorite time of year. Like most New Yorkers, I look forward to the cooler weather because that means big sweaters, hoodies and boots, football (and what I mean by football is yummy snacks, friends, brews, and relaxation), apple picking, cider, pumpkin patches and corn mazes (which I always have to cheat on to finish). It’s also anniversary time for Jeff and me!! This year marks five years on October 2. It’s hard to believe that it’s been 10 years together and 5 of those married already. Oldies but goodies. 🙂

Since our last post, we had two really amazing scans. Jeff’s last brain scan proved that the big boy “tumor” is indeed necrosis (essentially dead cancer). That means no brain surgery! The other small brain “mets” showed stability. To us, that was a good sign that his lung and liver scans may also be stable since the treatment was still working in his noggin. We got better-than-hoped-for results. The liver is still clear (has been for a few scans now, but we still watch it like a hawk) and the main lung tumor shrunk by fifty percent. That kind of result hasn’t happened since February of 2014 when he had his first scan on the first treatment. Several of the lymph nodes also did the George Costanza.

Since those two glorious scans, Jeff got the ok to come off of the steroid he was taking to manage the swelling in his brain from the big boy tumor. Sounds like a simple thing to wean off a steroid. It came with a ton of nasty withdraw symptoms that lasted about a month. *Sigh*. It was a long summer to say the least. And while I think we’re glad to see the seasons change and to celebrate our anniversary and all things pumpkin flavored, the fall has added meaning now. October 2nd as I mentioned is our 5 year anni and this year it is also a brain scan appointment. God willing, we will be celebrating two joyous occasions that day (cross those fingers and anything else you can possibly cross on your body, you don’t have to say what they are, just keep ’em crossed). November is another anniversary, but we can talk about that later. One day at time, ya know.

On a very happy note, we have been really really enjoying the last several weeks. Steroid-free and riding the high of two good scans, it’s a good time right now! The boys are back to school and doing well. Finley is getting ready to transition to the toddler room at daycare in just a few more weeks. All three of those kiddos light up our lives; they are the sweetest little men you could ever hope to meet. And when they get together it’s pure joy to watch. Finley gives kisses now and his big bros gladly accept them, drool and all.

Before I turn in, I have to tell you, last week, when school started, I parked the car at daycare and watched as a mom and dad put their little girl on the school bus for the first time. They were teary and excited for her, they had their cameras in-hand and were taking a million pictures of her. They were so proud, you could just see it on their faces. I have seen the little girl’s mom at daycare many times, she wears a scarf on her head and has for months. I sat and watched, it was almost like watching a scene from a movie. I don’t know the situation or the mom’s prognosis, but I know how those moments can feel, I was feeling it there as I sat and watched. Those are the moments that are full of joy and love and are simultaneously tainted by fear and sadness. What I walked away with though was the reminder of how beautiful life really is and how lucky we are to be on this earth for however long we get to be here. Soak up every moment, every day, every kiss… drool and all.

Much love and much hope. xo.