Mighty Struggle

Alienation. It’s a lonely word. It’s a lonely place. I find myself here more often lately. It’s not all bad. It’s not as dire as it sounds.

There are two things in my life that are hard to talk about, let alone accept. Cancer. That is one thing that I have lived with, an affliction that’s impacted my husband and my mother. The other is mental illness. That’s been since day one.  A long line of alcoholism, anxiety, and depression exists in our family. I exist between two taboos.

I grew up as the youngest of three. My two older sisters had me by a decade plus. One of them was my hero. She wore her jean jacket from The Gap like it was nobody’s business. She introduced me to The Beatles and Milli Vanilli.  She taught me to drive stick. She brought me to my first bar, as a minor. (Magic Hat’s Fat Angel was horrible tasting, more memorable was the kick ass design of the tap handle).

We were close for a a long time. And then she got married and had kids. I was an afterthought, and rightly so. I get that now that I have my own family. I was just a kid and she had real shit to deal with. Naturally we grew apart. Things were never easy for her, though they appeared to be from the outside. She started to drink, she started to change. I remember one Thanksgiving I came to her house to help her prepare dinner. She offered me wine in a mug. She had her own mug of wine. She kept it hidden in a cupboard in-between basting the turkey and making the homemade cranberry sauce. I didn’t get it.

We don’t talk very often. Today she called me, a rare occasion. I picked up, unknowing as I stopped saving her ever changing numbers in my contact list. The person on the other end of the line was not my sister. And as much as I wanted to help her, as many times as I asked how I could assist, she grew angrier with me. I couldn’t reconcile the conversation.

Just like I cannot reconcile that my husband is terminally ill. There are campaigns and hashtags fighting against the idea of lung cancer patients being called ‘terminal’. I suppose you could say that we’re all terminal from the day we are born. Like a new car being driven off the lot, there’s no turning back. So given that and the statistics around lung cancer, I’m spending my energy on raising money for research, not hashtags.

Adversity strikes us all.  It hits when we least expect it. It shows up when we’re already knocked down and waiting for the other shoe to drop. Life isn’t easy. God, is it hard at times. Sometimes it’s a fight just to get your kid to clip his toenails. But whether it’s toenails or cancer, or the quarantine 15, life is seriously so cool. Some days (ok, MANY days) I have to remind myself to open my eyes wide to seek the beauty before me. But it’s there, it’s so close and within our reach if we just ask for it, if we’re just open to receiving it.

Wherever you find yourself today, you’re not alone. Reach out, open your eyes to possibility, believe in miracles (they exist!). Here’s to being human and to our mighty struggle. Much love and SO much hope. xo.

Inspo for this post (beyond the mighty struggle): The Lumineers III Album and  The Lumineers Tiny Desk Concert

 

 

 

 

 

 

 

 

Be you.

We are in trying times; personally, for reasons I’ll share. But, in the greater sense, this is a time of uncertainty (or oblivious-ness if you’re not paying attention), unrest and turmoil.

Personally, we continue to deal with Jeff’s lung cancer. As I posted about in a recent Facebook update, there was one metastasis to his brain that had to be treated. What I didn’t share was this was the radiology oncologist’s interpretation of the scan. The radiologist reported one week later (when Jeff went for his mask fitting), that there were actually three spots to be treated. Fast forward one week later, the day of the SRS (stereotactic radiosurgery) treatment, there were SIX metastasis. The significance of this is that, if history repeats itself (which it has 2x before), growth (aka cancer progression) shows up in the brain first and then it shows up in the body. Jeff is the eternal optimist. I am the realist/pessimist in the relationship. I guess I mentally prepare for the worst so that I can deal with it better (not sure that’s really a great strategy, but it’s my go-to suit of armor). If this warning becomes reality with his next scans, it will likely mean a treatment change.

NBD. Right? Unfortunately it IS a big deal. A treatment change means wading through the unknown once again. Will the treatment work? Will our insurance cover it? Will side effects be manageable? Will he have a physical side effect that will require we explain what lung cancer is to our 5 year old? And so on and so forth.

But let’s not get (too far) ahead of ourselves here.

Right now, we are all facing some uncertainty. We might be worried about a loved one, an elderly parent or a grandparent. A friend, someone important to us whose immunity is compromised. Someone whom we live too far away from to offer help, who lives alone and needs a hand.

It’s a time to come together and support one another. We can only hope that for those we want to help but cannot for whatever reason, they will get the assistance they need from an organization, a friend, or from the kindness of a stranger.

This is a time to be vulnerable with one another. To ask for help when we need it. To go out of our way to check in on those we care about (a text, a call even?!), but maybe haven’t talked to in a while. To tell each other how we feel, good or bad, so that we can bond and renew a love that was once there or establish one that has never been shared.

If there’s one thing that cancer has taught Jeff, and me it’s that there’s nothing else in this world that matters more then loving one another. It’s not been an obvious lesson, as it might seem. It hasn’t been a day one lesson. We’re not perfect at it. But it’s all we’ve got, and it’s truly wonderful. Be you. It means a whole lot to us and to those that love you, and to those that don’t know yet how much you care.

Much love and much hope. xo!

 

 

Another story.

The last week has been really eye opening. There have been things that have happened at work and in life that have exposed me to different feelings and ultimately different perspectives.

It is so true when they say, you never know what someone else is going through. The other side of that is don’t pre-judge (or like, don’t judge at all) and more importantly, don’t be an ass. I think we are hardwired to judge for some reason. Or to assume the worst instead of the best. Why is that??? I like to think of myself as someone who is open to different ideals, different schools of thoughts. I mean, I used to wear socks and Birks, and for shit-sake (thank you MB Conklin for ‘shit-sake’, it’s one my all-time faves), if that was in the dress code, I might consider doing it now. Why can’t we all just be chill and open and like non-judgey??

You know what’s the worst? When you’re in your own head and super judgemental. That is where I am right now. I can’t get out of it. Why didn’t I do this? Why didn’t I push for that? Why didn’t I solve for xyz at work 2 years ago? It’s so easy and natural to judge ourselves.

Today, I was at my annual OB appointment. For those who know me well, you know that my OB is a male and he is an amazing doctor. For others looking in, you might think why would a dude be an OB? What’s this guy’s motivation? Honestly, I had that thought too, at first. And then I got to know him as my doctor for several years. And then he delivered my first and only baby. And then he saved my life after a long and hard delivery. I have nothing but admiration for him.

At my appointment this morning, I could tell he wasn’t himself. I asked him how he was doing and he went on to tell me about his very recent trip to India. He spent two weeks in a red light district providing exams and prescribing medication to women and young girls (as young as 7 years old). He said the experience was sobering. This, from a man who has likely seen it all in his decades in the medical field.

As he logged the notes from the exam he began to cry, clearly emotionally exhausted from his experience. This man is an advoacate for women. Today he told me that he thinks women are just awesome. He is a husband and father to four girls. I mean, to live in a house full of hormones and to feel that way says it all.

At the end of my visit he told me the story of a young woman he met on his trip that by some miracle escaped slavery. She had been so poorly treated that one of her legs had to be amputated. My doctor is now trying to find a way to provide her with a prosthetic leg.

Since his return from India last week, this man has delivered 3 babies. Those three babies were born here in America, where anything is possible. Yes, there are challenges What about the 3 babies that were born across the globe, that have almost no chance of growing up the way that you and I did.

My one regret was not giving my doctor a hug. I felt like I needed to honor the doctor-patient relationship. I also thought it would be weird to hug someone while wearing a paper skirt, with socks…that is open in the back. So instead, I plan to send my doctor a letter. I want him to know how amazing and inspirational he is. Maybe he knows that already, but my guess is that he just thinks he’s doing the job he’s supposed to do.

I guess this week reminded me to make sure people in my life know how valued they are and to follow my heart. I hope you’ll do the same. Imagine what this world could be if we left our pre-judgements at the door and could just be human, kind and loving humans.

Much love and much hope. xo.

 

 

Don’t stop believin’.

It’s been a super long time since I’ve sat down and blogged. That’s a good sign. It means my mental health is….healthy and my fear/anxiety levels are manageable. I mean, by today’s standards. A little anxiety and fear can take you places, right?

A few things have happened since I last wrote in July. We had an amazing family vacation in Rehoboth Beach. We were in a 5-car pile up on the way home from said vacation. We made the decision to move my mom from VT to Rochester. We broke ground and closed on a brand new home (cancer and all, why the f not?!). We said happy birthday to our now 14 and 16 year old kiddos. Jeff has taken on a new role at work and it couldn’t be any better fit for my social butterfly. I have settled into my role as an IT manager (only took 2 years) and feel more at home in my own skin than ever. I’ve had my first root canal and mammogram too. TMI? Sorry, man. It’s all or nothin’ here.

It’s been kind of a weird few months, but also totally awesome. I love this life. And as you know ‘this life’ includes lung cancer. We’ve made so many memories with friends, families and co-workers…aka some of our best friends in the world.

So often though we are reminded of our fragile reality.

Over the summer we said good-bye to Kelly. She was really special. A beautiful human inside and out. And she lived here in Rochester. There aren’t many people locally that are running around with a young family and stage IV lung cancer (if you are, we want your celly). Kelly struggled in many ways, but her light shined regardless of the adversity of the disease, of being a single mom. Her apartment was across the street from Finley’s daycare. Even when I didn’t see her, I thought of her every weekday morning when I dropped off. And I continue to think of her.

Kelly and Jeff shared a special bond and they always will.

You see, even when scans are clean and there’s no shit hitting the fan and when the skies aren’t gray, we still live with a dash of holy shit, when will it be us? We know that someday it could very well be. Just a couple of weeks ago our lung cancer community took a significant hit with the passing of Matt Ellefson, founder of SurviveIt. If you have a moment, Google this guy, he’s amazing and so is his wife Melissa. They kept it real throughout the 9+ years Matt lived with ALK+ Lung Cancer.

The moral of this rambling blog is that life happens. And whether you’re living with an illness or not, make sure to take a moment and dream. Believe. Anything awesome or shitty can happen. And it’s up to each of us to learn from it and find the joy in it. Be the good, friends.

Much love, much hope, and much believin’. xo!

Lost.

As I move through this part of my life, a chapter I share with lung cancer, I have become acutely aware of how different things are for me, my family. Let me be clear, this is an observation, not a cry for some sort of acknowledgement or pity.

As I morn the very recent loss of a friend to lung cancer, and as I read heartfelt comments from her close friends and family, and scroll through generic comments and emojis presumably from acquaintances, this distinction becomes more clear. I had a life before cancer moved in, a time when cancer was something I heard about other people having (and to which I said, let me know what I can do to help, because I wasn’t able to relate and didn’t really know what to say). My life at that time was peppered with struggles, happiness, successes and failures, just like anyone else. And that is my life today. But what I have gained is a profound perspective that I believe I would not otherwise have.

That awareness, that deep connection to the intangible and meaningful things in life is an incredible gift, and it is also what sometimes leaves me feeling lost. It’s something that I feel I can share with very few.

I realized today that I can’t always discuss things from my vantage point for fear of being seen in any way other than optimistic or positive. For fear of not being relatable or relevant because often my thoughts and feelings on things are very different than those I interact with…I guess that’s what close friends and therapists are for.

Bring on the co-pays.

Much love and much hope. xo.

#beatlungcancer #teamjoy

 

When the fog lifts.

Four years, four months, and fourteen days. [Queue Sinead]

Statistically speaking, he isn’t supposed to be here.

For much of the last year or so, I’ve lived in a state of survival. Life became segmented and cyclical, quite literally living from scan to scan. Holding my breath at each appointment, sighing out for ten weeks, and repeating again.

Every holiday, birthday, and milestone event bittersweet. Desperately trying to enjoy the moment, collect the memories, and set aside the sorrow.

Even when the treatments have been working, keeping the cancer stable or knocking it back a bit, I’ve lived within an ever-present uncertainty of tomorrow. Not the ‘anyone could get hit by a bus’ uncertainty. Rather, the unpredictability of living with a disease that can be so silent and yet so volatile. Lung cancer can quite literally change overnight, I’ve seen it happen to far too many.

Two significant events happened at the end of last year that created a shift. On the way to daycare one morning, I was feeling increasingly overwhelmed and stressed to the degree that if I could crawl out of my own skin, I would have. There was no triggering event, it’s just the way I felt…and it was happening on a regular basis. I became more agitated as I began to anticipate the usual morning whining and asks for snacks from the back seat.  Instead, I heard singing. Finley sang for the rest of the car ride. I realized then that somewhere in all of this, I had gotten lost in the darkness of it all.

The other remarkable (more accurately, unremarkable) event? Remission. That’s right, Jeff’s doctor used the good ‘r’ word. Never in a million years (or 4 years) did we dream this would happen. For caregivers dealing constantly with our own turmoil of the illness, a time of self-realization and relief from active disease is a blessing like no other.

I feel like I can actively participate in life;  a life I had, but lost sight of. I am engaged more than ever in advocacy, I joined a patient/caregiver advisory board with the American Lung Association and I spoke at my first lung cancer conference just last week. That’s something I’ve wanted to do for several years. I’m also going back to school to learn about IT (I’m the only ‘adult’ student and sole female in class, but I do love it) and I’m becoming more active in our community (say hello to the newest Lakeside Neighborhood Board member, baby!). Looking a bit further into the future, making plans that extend beyond a three month timeframe seems safer than it has in the past. I can even imagine us in Ireland, somewhere we’ve wanted to go together since we first met. And maybe we’ll buy a new house some day, or build one, or tackle a renovation together (not like hard labor or anything, just picking out the drawer pulls and light fixtures). The dreams are endless. Now that the fog has lifted.

Much love and much hope! xo!

 

 

 

 

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

Jeff, Mom, Me. My world.

 

Molly.

This morning Finley showed me his latest studio creation at daycare. His first clay sculpture. Two pieces of brown clay stuck together. Yes, it looks like what you’re thinking. He is so incredibly proud of it. I can imagine him spending his time rolling the clay, poking at it, figuring it out. For his process, his effort, his discovery, I am so proud of him. This little clay sculpture makes me smile, and giggle a bit too.

As I left Finley with his friends, I thought of Molly. How many times had she held something in her hands made by her daughters, beautiful and meaningful not because of how it looked, but because of what it represented, because of who had created it. I took pause in my moment of joy and shared that with Molly, though physically we were miles apart.

Pure joy. That was a phrase that Molly used often when we traded messages or when she commented on a post of a family picture. In true Libra-fashion, she was kind, loving, and gentle.

Molly was an October 11 baby, just like Jeff. Our families were connected by the stars and by lung cancer. Both Molly and Jeff were diagnosed in November of 2013. There were so many parallels in our stories – young children, active lifestyles, professional careers, wonderful family and friends, the list went on. With the promise of the latest in personalized cancer care, targeted therapies, there was no stopping us. In my heart, and foolishly in my mind, I believed these two would be among the elite, the few who would survive this disease.

However, in recent months Molly’s treatments began to fail her, and this past week it was clear that her time was short.

And like that, she is gone from this earth.

And now we grieve.

Our friend who stood with us at the starting line so many years ago no longer runs beside us. We will honor her with the spirit in which she lived her life, with kindness in our hearts and with nothing but gratitude for every moment of pure joy.

 

 

 

 

 

 

 

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.

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