Category Archives: Cancer Treatment

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.

 

 

 

 

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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.

Jeff is awesome and some other stuff.

It’s been exactly one month since I’ve put “pen to paper”. A lot has happened, geesh! Since our last post, as most already know, Jeff’s scan results revealed a sizable growth in his brain. And because no one could be certain if it’s cancerous or not, a craniotomy (brain surgery) was  recommended by our trusted team of doctors at Strong. After it was decided which surgeon was going to do the surgery, we met with him, ready with questions about risks, recovery time, possible long term side effects, and so on.  We sat down in the doctor’s office and were told the growth may shrink on its own and we could wait and watch. What a shock that was for us. I nearly broke down in tears. It never occurred to me that maybe just maybe Jeff wouldn’t have to be put through surgery. What a relief; perhaps a gift from above (thank you, Bruce).

Jeff has been on a steroid to control the swelling in his brain caused by the growth. It’s helped all of his symptoms…no more headaches, no more searching for words when he’s talking, and he can remember his passwords again for all of his online accounts. Yah, it was scary for a little while there. With ‘roids come some tough side effects that Jeff is doing his best to manage with the smile we all know and love. But in all honesty, he’s not quite himself, something we talk openly about. On August 5th we will get results from the next brain MRI (you’d think they’re having a BOGO on these things they way we’re going). The hope is that the growth will have shrunk and that the swelling will be reduced completely so that he can come off the steroids and even more importantly so that we don’t have to face surgery. To make things a little more interesting, Jeff’s liver enzymes spiked this week and he’s currently off his cancer treatment until they normalize. Sometimes there’s so much stuff to worry about, you can’t worry about any of it.

You know, someone at work said to me today that I take a lot of days off. I thought about that  tonight as I drove home. I guess I do take days here and there. More than I used to. It’s one of the ways I manage this, cope with the uncertainty and the stress and the sadness that I find myself struggling with more often lately than I have in a while. The last four weeks have brought Jeff and I closer than we’ve ever been. Because of his love and deeper understanding of what this is like for me, his caregiver, I’ve gone back to yoga (spending some QT with my mat as they say…actually no one says that) and am focused on getting myself a little healthier.

In spite of the “opportunities” we’ve been faced with this summer, we’ve committed to make the most of it, and we have. We’ve taken a couple of overnight trips (thanks to AJ, UT and Grandma Diane for watching the little man for us!), we’ve gone to farmers’ markets, checked out events in our beloved city (ask me how beloved it is when the snow hits), and have spent time with our amazing kids, family and friends. We are so blessed.

A final thought, that I will take with me to the mat tomorrow morning…When I first started this blog I really wanted it to be more about our life with a dash of cancer. As hard as we try to not let this illness define us (or defy us), it’s invaded our lives in a major way. It’s one thing to live with a disease that there’s a defined treatment plan for, a course to follow, an endpoint (one other than the unmentionable). This late stage lung cancer business just keeps going…sometimes I feel like a broken record when people ask how we are…how Jeff is doing…how I am doing. Sometimes I feel like I should make light of it, or change the subject so that people don’t get sick of us or feel like they need to search (once again) for encouraging words to share. Man, maybe the ‘roids are getting to me through osmosis or something…I did use Jeff’s toothbrush today… 🙂

Much love, much hope, less cancer. xo!

Unplanned scan.

Some things in life are predictable. Like PB+J is always going to taste good with a cold glass of milk. Even life events can be predictable. Like every Bills game we go to there will be at least one fight that breaks out, one fender bender on the way out of the stadium, and one shirtless dude will roll down that hill where everyone goes to pee. It’s also likely that the Bills will have an amazing first quarter and then somehow manage to tank the rest of the game. Things like that are a pretty safe bet. One thing that is low on the predictability meter is cancer. I’m learning this more and more as we go.

Last week was one of our longest weeks leading up to a scan. Jeff had his lung and liver scan results scheduled for Thursday morning. It felt like we were holding our breath from Sunday night until after the appointment. We hardly spoke to each other when we were at home. This was the first scan after Jeff had restarted treatment on the lowest dose of Zykadia. We had no idea if this new dose was doing anything to keep the cancer under control. It didn’t help that Jeff was having chest pain. Anxiety? Maybe. Cancer? Possibly. *Sigh* We were silently prepared for the worst. Fortunately, the scans were stable!! Some areas even showed some shrinkage (good in this scenario, bad if you’re George Costanza).

This news had the makings of a good weekend. We had fun plans ahead of us and a good (bestie-status) friend visiting us from out of town. We should have been on cloud 9(er), and in some ways we were. Unfortunately, however, Jeff has been having headaches on and off for the last few weeks. Since the appointment just last week he’s had more headaches and a few other symptoms popped up that have us concerned there may be progression of the cancer in his brain. His last brain scan a few months ago (after being off of treatment for 7 weeks) showed improvement in some of the spots, some spots were gone completely and there were some new areas of cancer that had cropped up. The plan at that time was to get him back on Zykadia and then in July go for another brain MRI. Instead, due to the symptoms, we are going to be getting him a MRI this week, we’ll get the results Friday.

We’re trying once again to stay in today, not worry about the future and all that good stuff that we should all do regardless of managing a cancer diagnosis. As a wise, animated mouse once said, “The only thing predictable about life is its unpredictability” (Remy, Ratatouille). I guess that’s all any of us can go on.

Much love, much hope, less cancer. xo.