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Two bees mating flew into my head on Saturday night.

This happened tonight, not to me, but to Jeff. We had just sat down for a flight of tasty brews and out of nowhere something hit him in the head. It was windy, so we thought maybe a walnut flew off a tree. When we looked down, there were two bees on the ground that were…you know… together. They quickly flew off, going their separate ways. A totally random, once in a lifetime occurrence.

What a metaphor for life; so much of it is chance, good luck, bad luck, karma, the universe, whatever.

Last week was scan week. So as per usual our stress levels were relatively high waiting for results on Friday. On Wednesday, I called my mom like I do every morning and she told me very nonchalantly that she found a lump on her breast. No big deal, the Google results had already shown that it was likely benign based on her assessment. Now living in the mentally compartmentalized world that I do, I filed that away.

Friday morning Jeff and I met with two residents for rounds of routine neurological tests and questions (touch your nose, follow my finger, any shortness of breath? coughing? headaches?) followed by the radiologist and the oncologist all of whom had good news – the brain and lung scans looked great. This is the second set of scans since Jeff switched to Alectinib that the cancer is showing an excellent, sustained response to. God is good. We are so deeply grateful.

After the appointments, Jeff goes off to work and I stop off for a giant salad and seltzer (living large), and then a walk around a couple of stores before I head home to spend the afternoon with Finley.

That evening my mom calls to let us know that she had a mammogram and MRI. Three spots, all highly suspicious, nearly-confirmed breast cancer. Holy shit. Not my other best friend. I don’t know how much more I can take.

Now we are in the the throws of diagnostics. I say we, but mom is the one doing all the heavy lifting and experiencing the pain of needle biopsies and other discomforts of being the patient.  I am here, 250 miles away waiting for calls, conferencing in with her doctor, hoping, praying that she gets a bit of good news somewhere.

Yesterday, the doctor confirmed her diagnosis is breast cancer and not a recurrence of the non-Hodgkins Lymphoma that she’s already been managing for 10 years. We have more questions than ever, but we have to wait.

I find this is like learning another language all over again. I can speak lung cancer all day long, but breast cancer is like Greek to me. The diagnostics are different, the genetics are different, the treatments most certainly will be different. I thought I’d be the best resource for my mom and I’m already learning that I have a lot to learn.

I’m so tired of cancer. I’m not angry about it, I’m tired of it. Exhausted by it.

I do have to wonder though, why my husband and mother, the two people on this earth that I love, and trust explicitly, the only two people that I can be my most honest, true self with are sick. Why they are faced with such horrific illnesses is something I will never understand.

If there’s anything cancer has taught me, it’s that there’s nothing, absolutely nothing in this life that you can control. It’s the hardest lesson to learn when your world is seemingly so in-control until cancer invites itself in. And really, the lesson is to let go. Cancer or not. Let go and have faith in whatever or whomever it is that you believe in. Don’t let the stuff that doesn’t really matter get you down, or interfere with living life. We weren’t put on this earth to have perfect lawns and drive luxury cars, to kill ourselves to keep up with the Jones’s. We were put here to make a difference, to be kind and to help others, to love and be loved. At least that’s what my mom has taught me.

Those two bees didn’t see that ginger head coming tonight. But they’ll figure things out. And we will too.

Much love and much hope. #beatlungcancer #beatbreastcancer

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Jeff, Mom, Me. My world.

 

Action is hope.

The last several months have presented our family with significant changes. My mom retired after working for 60 of her 72 years on this earth. Her work was on her mind so much it used to wake her at 3 or 4am everyday. Since Fin was born I have talked to my mom every morning after daycare drop-off. I still talk to her most days, but sometimes when I call her now she doesn’t pick up. Because she’s sleeping in. She’s on her own time now, redefining her routine and her purpose.

After 12 years working in my company’s service ops division, driving to the same building everyday, I took a new job managing in IT. I felt like a kid going to a new school. I left a place where I knew most every face in the hallways to sitting in meetings where I knew no one and a precious few reached out to welcome me. I experienced all the anxieties you feel when you’re in new surroundings and meeting new people, AND I also had to learn a new language, IT-speak. I’ve never heard so many acronyms and numerical references crammed into conversations until I took this job. I can now say after just a couple of months, I’ve made some great new friends, I’ve proved to myself I can thrive in any situation (if I allow myself to be vulnerable), and I’m learning SO much from some wonderful and brilliant people. It’s exhausting and life-giving all at the same time.  My relocation meant Fin had to endure a change too.  We moved his daycare to a center closer to my new office as I traditionally handle all of the drop-offs (Jeff benefits from going back to bed every morning when we leave to help his body handle his treatment). For nearly three weeks Fin cried when I left him in his new classroom, he went on a hunger strike for several days, and he was just generally out of sorts. Now, he can’t wait to go ‘home’ every weekday to see his teachers and new friends.

And finally, Jeff started a new treatment. After 18 months of severe side effects (though he never complained) on Ceritinib, his second targeted therapy, he started Alectinib which was just recently approved by the FDA. Like the rest of the changes that were happening during this time, a treatment change brought on a whole host of uncertainties and anxiety. Did we make the right decision by going with this drug or would a clinical trial drug have set up us for longer term success (aka living)? Should we have pushed the limits with Ceritinib and tried to squeeze more time out of it? How’s he going to feel? Is it going to work? In November he started Alectinib and scans were scheduled for February. A reprieve of sorts going that many weeks (and through the holidays) without a scan looming. But it also meant some of those questions would remain unanswered until then.

Then there was another change. I won’t belabor the issues and concerns at hand under our new administration (if you can call it that). There are many issues on the table that concern us all, and some that concern some of us more than others, at least at the present time.

Fast forward to last week. Countless executive orders, bans and embarrassing Twitter storms later, we got great news in our little world. Stable scans. But not just any stable scans. For three years we’ve compared one scan to the next looking for subtle or major changes in the cancer. But this time when we reviewed the results we also looked back at the  original CT scan of the primary lung tumor. What remains from that original tumor, his oncologist believes, is scar tissue. And the lymph nodes that have been riddled with cancer are all greatly reduced or healthy compared to that first scan. The brain scan which at one point in time showed 17, yes that’s SEVENTEEN brain mets, now shows just a few, all of which the radiation oncologist proclaimed last week as dead. The liver is still healing, we are watching it closely. Though we are not out of the woods, we never knew if we would achieve such success with managing his disease, but we always had hope.

What we’ve learned these last three years is that action fuels hope. We have acted as our own advocates in the treatment process. And we have advocated for the greater cause participating in numerous lung cancer awareness efforts. We have prayed and trusted our faith to carry us through times of despair. We have humbly accepted gift from friends, family and strangers. We’ve been blessed with support of all kinds; meals, house cleanings, yard maintenance, prayer services at church and in our home, monetary gifts, gifts of time, and so much more. Without being open to any or all of this, without taking actions, simple actions (simple on the outside, sometimes pride-crushing on the inside) like saying “yes, I’ll accept your offer to help us,” I don’t believe we’d be where we are in this journey.

Whatever your change or your challenge today, know that there is always hope if you’re wiling to do something. If your only action today is simply being open to the idea of hope, that’s something. Much love and much hope. xo.

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And in the end, even if a scar remains it means you survived.

 

Through the storm.

The two innocent, incredibly adorable, rainy day-prepared girls in this photo are me and my childhood friend, Julie. Julie and I go way back, like to the 1980’s way back (in case you didn’t pick up on that from the picture). We lived on the same street and used to run to each other’s houses to play and do homework (she was way smarter than me, so that worked out in my favor). During the week, my mom left very early for work so I walked to Julie’s house each morning and then we’d head off to school together. I remember hanging out in the kitchen watching as her mom progressed through the many steps it took to get three kids out the door. It was a whirlwind of breakfast making, breakfast eating, hair brushing (this part took a while, these kids had some seriously thick hair!) and double checking everyone had their lunches and ‘stuff’ for the day.

Just like watching the routine of each morning whiz by, so too did our childhood years. When high school came along Julie and I grew apart as we met new people and explored new interests. Our one constant through it all was our love for the clarinet and Mr. Hillman, our beloved band director (this is an insiders reference for those who are lucky enough to call themselves Waverly Wolverines).

Julie and I found each other on Facebook in the early 2000’s. We exchanged some messages, but then (college) life got busy and we lost touch again. In more recent years Julie has been a wonderful support and has reached out to me numerous times since Jeff’s diagnosis.

Never did I think that I would be in a position to return the favor. In September, Julie’s mom pulled a muscle in her back. When her pain persisted she went in for an x-ray which led to further testing, and finally, unexpectedly, a lung cancer diagnosis.

We’re back at it, the two of us kids from Center Street. Quite literally we’ve been doing homework together and sharing notes. The subject matter has changed a bit and there aren’t any Trapper Keepers involved this time around. I will forever be heartbroken that Julie and her family have to travel the road that is lung cancer, however, I am incredibly grateful to have my friend back in my life. And just for the record, not that it’s a competition or anything, but I think if there was a Regents exam on lung cancer I might get the higher grade. ; )

Much love and much hope. xo!

“And once the storm is over, you won’t remember how you made it through, how you managed to survive. You won’t even be sure, whether the storm is really over. But one thing is certain. When you come out of the storm, you won’t be the same person who walked in. That’s what this storm’s all about.”

– Haruki Murakami

 

 

 

 

 

 

 

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.

 

 

 

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.

 

 

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.