Category Archives: Community

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.

 

 

 

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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.

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!

Pink beards, red wagons and ALKies.

Things have been blissfully quiet here recently. Finley turned one and we partied hard in celebration. Noah started golf lessons and is developing his own style with an arm full of Pura Vidas and red hightops. Aidan rocked this past quarter at school and is getting more grown up every time we see him. Even though we are constantly busy, things feel like they have slowed down. Jeff is feeling well and is doing well on his latest reduced dose of Zykadia. He’s been back on treatment for 5 weeks and counting. His liver enzymes have been within an acceptable range with every week’s blood test (he’s like the Norm of the local medical labs…much better looking, obvi). With things back to ‘normal’ (haha, no pun….ok) I think we all feel like we can breathe. I was at Wegman’s two weeks ago re-stocking our beet supply (more on this in a second) and bringing back some returnables. As I was headed towards the bottle and can machines (#livingthedream), I passed a tall, older gentleman with white hair and a kick ass pink beard. I couldn’t help but smile. I think in a past life I was a hippy, which this dude clearly was, and his pink beard totally made my day. At that very moment, one of my bags fell out of my cart (I refuse to use the minivan sized carts, so I always get the tiny carts that are just that, tiny). He stopped and picked up the bag and attempted to put it back on (not in) my cart. It fell out again. I told him not to worry, I could just carry it. He insisted on setting it back on top of the other bags and then held it there as he escorted me to the can and bottle machines. We made small talk for about 20 feet and then arrived. He said, “Cool beans! Have a great day!” (hippy-status doubly confirmed). As for the beets, I bought a week’s supply. Jeff is eating them everyday and we’re certain they’ve helped regulate his liver function (thanks to you, Linnea for the suggestion!). I’ve jumped on the beet wagon as well and can’t go too many days now without a beet-blueberry-spinach smoothie. Try it, you’ll like it.

Back to Fin’s birthday. He was spoiled absolutely rotten! He is literally swimming in toys and clothes (and several new bottles of sunscreen which we will go through quickly I’m sure). One of his fave gifts at the moment is his new red wagon. We’ve taken him for a ride in it almost every day since his party. I think he could ride in it for miles and be happy. And that, that makes me happy.

As we officially head into nicer weather, we are SO fortunate to kick off a good-looking weekend with a bunch of good-looking people at Ales for ALK II. I can’t believe it’s already been over a year since the first one. Jeff and I feel blessed beyond belief to continue to have an unbelievable support system. Thanks to everyone who have worked so hard to pull this event together, to those who are taking time to come out and kick some ALK ass with us and to those who can’t attend, but have reached out with donations of all kinds. Jeff and I thank you from the bottom of our hearts.

Much love, much hope, and cheers to ALKies everywhere. 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.