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.

 

 

 

 

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New Year.

Happy New Year! Did you make a resolution? How’s it going so far?  I started thinking about mine weeks before the ball dropped (which I missed…I blame a certain ginger’s early morning wake up calls) and just today decided what I want it to be.

I’m at my all-time “curviest” and thought resolving to lose 15 pounds would be good. I also haven’t seen my yoga mat in about 5 weeks and thought recommitting to my practice would also make for a healthy resolution. Really, I’d kill two birds with one stone, I could lose some poundage and regain some mental and physical strength. Then I started to doubt my commitment to doing either of those things, or really anything for any sustained length of time. And then I got mad at myself for giving up before I even started. And then this showed up in my inbox. Choosing a theme for the year instead of making a very specific resolution is more my speed these days.

And so, the theme I’ve chosen for 2016 is acceptance. My runner-up theme was fuck it. That’s totally up for grabs if you’re theme-less. So what now? Seems like an easy way out to just pick a word or two and not have anything actionable like committing to run more (bad ankle, no can-do) or read more (too tired after the babe goes to bed…must rest). But you know what, I think this acceptance thing is going to be a challenge, one I’m excited about. The beauty of this particular focus or theme is that by it’s own virtue, acceptance means that something does not have to be perfect, and that in it’s own way, it’s own state here and now, it’s ok. Like, it’s all good, dude!

I want to be clear (for my sake more than anything) that by being more accepting or working towards acceptance, it doesn’t mean I’m giving up on things. I am working towards (fully-ish) accepting Jeff’s diagnosis and the challenges it presents us with. Acceptance of this bullshit disease (you can see where I’m still lacking some acceptance here) does not mean I’m giving up on him or our family. The more I can be at peace with it, the more room it makes for me to be a better caregiver, wife and mom. This is just one of many areas in my life where I want to and feel compelled to apply my 2016 theme to.

Before signing off, I want to share that we had a wonderful holiday this year. With a stable scan at Thanksgiving, cancer stuff was in the back of our minds and we were able to thoroughly enjoy every moment with our family and friends. Even Jeff will admit that 10 days with his mother-in-law was great.

The new year brings a new round of scans.  In a couple of weeks we will get the full report as the doctors synced up the lung/liver CT and the brain MRI so that we can receive results for everything on the same day. We are forever optimists, but I’d be remiss if I didn’t say that we’re both feeling the scanxiety creeping in. It’s been two years of this cycle and it finally time that I accept that this is how it feels and it will likely always feel…and it’s ok.

Whatever your resolution is this year, I wish you the very best. And if you didn’t make a resolution, or you already stopped going to the gym, fuck it.

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.

 

Lung Cancer. Life and loss.

Lung cancer. It’s on my mind tonight, more so than normal. Lung cancer awareness month is in full swing. Our lung cancer community is busy sharing important information, the stories of those who have passed, those who are fighting, surviving. We are urgently trying to reach the masses to grow awareness and to increase research funding that is so desperately needed.

Lung cancer is on my mind as I sift through news feeds on Facebook and Twitter. The longer and deeper our journey with this disease, the more people we meet and connect with. Makes sense. And this is a very good thing, mostly.

I can count on one hand the number of loved ones I have lost over my lifetime. I need both of my hands to count the number of lung cancer friends I have lost in just the past two years. Most recently our community lost a man, husband and father by the name of Dan Powell. Ironically, Dan was an air quality advocate. Not just in his spare time, it’s what he did for a living. Dan and I met at a lung cancer conference in Boston less than a year after Jeff’s diagnosis. After that we periodically traded messages about treatments and clinical trials. He was a friend and a partner of sorts, someone I could bounce things off of as I continue to search for answers.

As we approach Thanksgiving week, I think about all of the caregivers I know who are heading into the holiday season for the first time without their spouse, their children without their parent. I think about all of the patients I know who are looking for new answers because their treatments are failing. And I think about my own family and friends and how hard this has been on all of us. The uncertainty of an illness like lung cancer constantly throws not only your loved one’s mortality in your face, but your own mortality as well. It’s a bizarre paradox being focused on squeezing as much joy out of life as you can while simultaneously wrestling with the fear of death; I constantly play tug of war in my mind.

Jeff’s next scan of his lungs and liver is on Monday. We are scheduled to receive results on Wednesday afternoon (yes, the day before Thanksgiving!). A year ago this time we were faced with a similar situation. And when we found out his disease had progressed, it was like he had been diagnosed all over again. We pray that this won’t be the news we receive this year! Good, bad or stable, we’re ready. For goodness sake, this ain’t our first rodeo.

Much love and much hope. And much turkey (or Tofurkey) of course! Wishing everyone a peaceful Thanksgiving. Many thanks to you for keeping up with us, sending us your prayers, and giving us support all year long. We are so very grateful. xo.

 

Two.

Tomorrow, November 6th, marks two years since Jeff’s lung cancer diagnosis. It’s an anniversary of sorts, a “cancerversary” as it’s known in candy land, oops, I mean cancer land. Is it something to celebrate? Not exactly. However, there are a million things we are reminded of and so grateful for on this cancerversary, and for that, we celebrate.

Since our last post, Jeff had his brain radiation treatment. Five brain lesions (or “mets” as we say) were treated over an hour and forty minute session. I planned to meet Jeff at the hospital to wish him luck before the procedure, but arrived 5 minutes too late. Disappointed (and feeling a little guilty for my tardiness), I reached in my purse for my phone only to realize I had just missed a call from daycare. I called back and was told Finley woke up from his nap with blisters around his mouth and I had to pick him up right away as the center suspected Hand Foot & Mouth Disease. I forgot to mention, this day also happened to be my first day off from work for what was going to be a week and a half of “me time”. A chance to regroup and do nothing or everything I wanted. I broke down; selfishly thinking that I would be taking care of poor Fin for the next week and a half instead of having time to myself. And who knew how Jeff would feel after his treatment. So naturally I sat in the cancer center in tears (awkward) and called one of Jeff’s best friends and asked him to come to the hospital to wait for Jeff. He was on the road in minutes. I picked up Fin and we whooshed (any Thomas fans out there?) over to see the pediatrician who gave him a clean bill of health (aka a note stating he just had a rash on his face from his binky). Jeff’s BFF texted me to say the treatment went really well and all was right with the world once again.

I’ve mulled this particular post over and over in my head. It’s a privilege and a blessing to be laying here in bed, next to Jeff, writing this tonight. Over the last twelve months I have seen too many Facebook updates from fellow caregivers who lost their spouses to stage IV lung cancer. Some who were diagnosed around the same time or even after Jeff. Often, Jeff or I are asked if he is still on treatment or when his treatment will be complete. The answer to that is likely never. There is not a cure for this cancer, nor is there one in sight. There are, however, very effective treatments, like the two that Jeff has been on. These treatments do not tend to be long lasting as we have experienced first-hand. One treatment in year one and a second treatment that we believe is starting to fail in year two.

So what is there to be grateful for exactly? 🙂 Well, a lot of things. Namely, the amazing people (many of whom I believe are reading this blog) that surround us at home, in our community, at work, on social media, and of course our incomparable family and friends. More intimately, Jeff and I have had our marriage and our friendship tested in ways I didn’t even know were possible. And while this has been extremely hard at times, we are much stronger for it and share an unbreakable bond. For this I am forever grateful. We are also hopeful and excited about all of the potential that exists in the science and the treatment of lung cancer. There are over 100 lung cancer drugs in clinical trials right now. That’s something to celebrate. The list goes on and on. But I want to save something for next year’s blog. I think we’ll call it “Three”.

“Each morning we are born again. What we do today is what matters most.” – Buddha

Much love and much hope. Twoday and always. xo.

Must rest.

I have never met Jeff’s dad. He passed away in 1998 from pancreatic cancer. Though I didn’t have a chance to meet him, I’ve heard many wonderful stories about Bruce Clark. Jeff and his mom remember him fondly; his kindness, his sense of humor, his love for collecting (he had one of the nicest collection of antique Rochester bottles at one point in time), his green thumb, the way he made his family and friends feel loved. Jeff and his mom and dad used to take family vacations every so often. One of my favorite stories involved a trip they took to the Adirondacks. Bruce and Jeff wanted to go for a hike with Jeff’s mom up Bald Mountain. The three hikers started out pretty strong. But after a while Jeff’s mom started to fall behind a little bit. Bruce and Jeff kept looking back, reminding her how beautiful it would be at the top. Finally, after more time had passed they looked back and Jeff’s mom was sitting down on the trail whispering, “Must rest!”. We always have a good laugh about this story (Mom Clark don’t kill me for sharing it!).

Since our last update we’ve had a long week and a half of appointments, scans, differing opinions from the doctors, planning our Plan B (or would this be Plan C?…) and so on. To say this has been draining is an understatement. Today was the final appointment in the series, a meeting with the oncologist to review the lung, liver and spine scans. We are both exhausted, and as Jeff and I waited for the doctor to join us in the exam room we both fell asleep.

Ok, so let me cut to the chase with the update. The oncologist let us know that there’s some slight progression in a number of lymph nodes. The spine scan showed no cancer (hell yah!!), but rather, revealed a disc problem that is the cause of Jeff’s leg pain. With new spots in the brain (see previous blog) and slight progression in the nodes, Jeff’s doctor suggested he switch treatment (called it, kid). She recommended Alectinib, another targeted drug. This drug is not “to market” meaning he would have to enroll in a clinical trial. The nearest ones being in Boston, Philly and NYC. Jeff then suggested another option, to which she agreed to. The plan is for Jeff to increase the dose of his current treatment (Zykadia aka Ceritnib) and to get the brain mets treated with SRS (radiation).

So next week he will have his “planning session” to get another radiation mask made. Jeff had SRS to 7 brain mets almost exactly one year ago. Each time you undergo this type of procedure a new mask is made to ensure it fits your face perfectly. The procedure will be scheduled after that. We are both relieved to have survived another round of scans and appointments and to have a plan in motion.

Today reminded me how far we have come in the nearly two years since Jeff was diagnosed. And in a way it’s felt like an uphill battle sometimes. One of my good friends described the recent setback as shoveling snow while it’s snowing. And that is how it’s felt a little lately. But, we keep climbing the mountain, hanging on tight, encouraging each other when one grows weak or tired. And when we get to the top it will be beautiful. But for now, we must rest. 🙂

Much love and much hope. 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.