Category Archives: Scanxiety

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.

 

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.

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.

Go easy, kid.

All too often I find myself trying to figure out what this whole cancer journey is supposed to mean. What it means to Jeff, his family, the kids, our friends, to me… It’s like sitting through a bad philosophy class in college where you’re desperately trying to follow along and understand, to make sense of it and then eventually some of the students just give up. Today I gave up. The past two weeks were excruciatingly long. At the end of it all, we are grateful and relieved, and we feel beyond blessed. This weekend we celebrated with family and friends who we hadn’t seen for far too long. Today I woke up like I do everyday to the sound of Fin crying (the little man, well, big man wakes up ready to eat!). Jeff got up with him and I slept in for the first time in months…maybe a year even. It felt great. As the day went on and Fin went down for naps, I laid back down too. I had no problem falling asleep. I realized I was tired like I used to be when I went home on spring break. It reminded me of those first couple of days in your own bed feeling so happy and secure, easily sleeping past the noon hour… Except today was a little different, I felt an incredible amount of guilt for sleeping as much as I did. It was a mix of feeling the tug of chores going undone, being absent from the boys’ stay, and realizing I was void of the energy I thought I should have after Jeff’s good news.

Even writing this post, I feel like I should be full of hope and happiness. It’s not that I’m not. In fact Jeff and I watched a great piece on 60 Minutes tonight about miraculous strides being made in the treatment of cancers using Polio. We were nearly brought to tears sitting there, being reminded of the reality of his disease, but even more so realizing the possibilities that lie ahead in treating it. Maybe curing it. All really positive things these last couple of weeks. All things I’m internally jumping for joy over. And yet, I know when I close my laptop I will be asleep in minutes.

I guess we’re all allowed a day here and there to give up, to give in. Maybe this will all make perfect sense tomorrow.  🙂

Much love and much hope! xo.

Scan week.

On Friday morning Jeff called me to say that his online medical chart updated and unfortunately his liver enzymes were still high. We were both anticipating all would be well and Friday would be the day he’d go  back on his treatment, but no such luck. I went into a bit of a panic mode and immediately called Strong. It took several calls to the cancer center before our team nurse finally called back (she made sure to tell me that they received ALL of my messages….sorry, Joyce, ever heard of “medicine of the highest order”?? this is not it!!). As we already knew, Jeff’s oncologist was not about to let Jeff get back on his treatment with the liver still healing. So, the plan is for him to have a full body PET scan this Wednesday. He hasn’t had one since his initial diagnosis (aka “Dx” if you’re Tweeting with  your cancer peeps) in November 2013. So…..we’re a little nervous about what the scan might reveal, but are also hopeful it could look ok. Jeff has been feeling mostly good, so hopefully that counts for something. We will get the PET scan results Friday morning. The next morning, Saturday, Jeff will go for a brain MRI. That will give a better image than the PET so we can see how things are looking in the ole’ noggin.

No matter how you slice it (scan humor anyone?), scan week is really stressful. Frankly, it sucks. If you think of it and could send a couple of extra prayers up to the big guy, we would really really appreciate it.

Much love and much hope! xo.

Last year was like getting a subscription to the Jelly of the Month club…

It’s hard to believe the holidays are upon us. What have been, in previous years, really special times that I’ve looked forward to are now slightly (ok, like really) tainted with the memories of last year  –  our first holidays with cancer. Merry Cancer everyone!

Now, I will say the second time around already feels a little easier, more manageable emotionally. I’m excited to decorate the house and to get things feeling cozy for the kids and for Jeff. I feel like I can handle the stresses that come with the holiday season because this year I’m not going to let it take over. If there’s one thing cancer has taught me is to not sweat the small stuff. And hitting the mall and buying gifts is small stuff. Baking and cooking and running around like a crazy woman trying to get “it all” done is small stuff. I plan on doing what I can, when I can and that’s it (my apologies to the half of you who do not get a card from us this year).

Tomorrow is the first appointment of two in our holiday series of cancer check-ups. We meet with our oncologist to review scans of Jeff’s lung and liver. He feels good, so we just hope that the scans reveal to us that the treatment he’s on is still working. While I know we could handle a treatment shift (we know someday it will happen), it’s not at the top of our Christmas list if you know what I mean. In December Jeff is scheduled for a brain MRI to confirm that the SRS treatment took care of those nasty brain mets and to see if any new ones have popped up.

Santa, if you’re listening, we’d really like good news from the doctor this holiday season. And if there’s room we’ll take a remote car starter too. 🙂

xoxo!