Happy 40th

Today is a day I should be celebrating. I should be planning some raunchy, welcome to mid-life party to celebrate your big 4-0. Instead, I am haunted by the past 9 birthdays I haven’t been able to celebrate with you. When Jan. 14th rolls around, all I feel is sadness and anger. Anger that cancer is a thief who violently ripped my best friend from this life at just 31 years old and sadness that there will be no new memories. No matter how many times I rehash it – there’s no rhyme or reason. Your exit from this world still paralyzes me. And then there’s the guilt, the guilt that I still get to be here. Twelve years and dozens of cancer treatments later – and I am still on this side of the dirt, without you.

This week, I had my regularly scheduled oncology visit. Just the usual – a chemo toxicity check and an injection. From the time I pulled into the parking lot until I got home I felt you with me. It started when the “iPod God” chose the Verve’s “Freshman”- I can still hear the song blaring from the CD player in “The Locker Room” on McDonald street. Because damn boy you loved that song. Then you followed me right into my port draw, when I saw your friend Nurse Susan. Why Susan hasn’t drawn my port in many, many months but your birthday week, there she was. The gift of a familiar, compassionate face. Then the oncologist actually brought up my current chemo pill’s ability to protect from pancreatic cancer. She had forgotten that you, mom and dad all died from the wretched disease. And I felt so torn – on the one hand, what great news to know there are so many more options out there. And on the other hand, why, why couldn’t these options have existed in 2013? Why couldn’t we save you?

So, in this weird world where I don’t have you with me physically – you still come to me in the strangest ways. And when this happens I feel so damn grateful to feel you with me again. I just want to press “pause” on the memories and wrap my arms around them tightly, protecting them.

The other day a teacher asked me where my son got his sweet dance moves? I could feel tears welling up in my eyes – as I knew the answer was you, Uncle Joe. I couldn’t help but close my eyes and see you sitting at Jim’s place with a smile and rocking some “pull the chain” dance moves. And then there was a flash of the good ole “Hackett two step”. And the next thing I knew, tears were racing down my hot cheeks. And just like that, my heart was aching and I was crying and smiling at the same time. Crying because your absence still hurts and smiling because I got 31 years with my best friend. It’s still so hard to navigate this world without you. The world, it is so lonely without you.

So on this day – I am going to honor the sorrow and sadness I feel without you. And I am also going to celebrate the 31 years I did have with you. I am going to remember you LOUDLY. Because I don’t think there is anyone who could make me laugh like you did, make me dance like you did, make me sing the song louder like you did. You had a way of showing me all the little things to celebrate – that first bite of a kickass lasagna, the first notes of a song that lit your soul on fire, that hole in one on a bag board, that first jump off the bow of the pontoon in early summer – you my brother were all about the pleasure principal. God, I miss the excitement of sharing all these moments with you. But I feel so lucky to feel you with me when I do any of these things.

Your magic is still here all these years later. We haven’t forgotten you. You left your mark little brother. I see it in Jack’s dance moves and his ability to remain ridiculously “cool” in any situation, in Grace’s one-liners and the smirk that is straight from your face, in Emily’s witty comebacks – you are alive and well at Casa del Baer. Happy birthday little brother. Tonight – in honor of your 40th – we shall have cupcakes and dance our faces off.

“What we have once enjoyed deeply we can never lose. All that we love deeply becomes a part of us.” –Helen Keller

Feeling the vulnerabilities in ALL the ways

This virus and our current situation has a way of leaving a gal feeling all the vulnerabilities.

Today was the first time I attempted to leave my house since chemo a week ago.  A quick drive to town to pick up some local take n bake pizzas and swing through the pharmacy drive through. Armed with gloves, disinfectant wipes, antibacterial gel and an epic playlist-my daughter Grace and I hit the road. Only to get five minutes into the trip before I felt it, that oh-so-reliable feeling of a stomach upside down. Dry heaving and nausea forced us into a quick trip back to the house. I knew I needed an anti nausea medication and my bathroom STAT and all would be fine. Or so I thought? And then I saw it as I glanced over at my almost 15-year-old’s sweet face – horror. Oh man. While this has been my norm since early December, it hasn’t been hers, or her siblings, I typically try to get my shit together when they’re at school. This damn virus and this current sitch has me feeling vulnerable in ALL the ways. I’d do just about anything to wipe the look of helplessness and horror from her face.

Quarantine time has been ok. My three teenagers are handling things surprisingly well. I’m so proud of their innovative spirits and resilience. I am so grateful to sink into some endless, schedule-free time with these humans whom I utterly adore. I should add how thankful I am that we have what we need while so many do not. But knowing they are seeing ALL my post chemo weaknesses has been sobering.

They’ve shown nothing but solidarity as many of their friends are finding creative ways to “get together” from six feet away. It’s been impressive to see them stand their ground and be okay with it. I’ve heard the whispers of their really sick mom, the one with the compromised immune system.

If I’m being honest – it breaks my mom heart a little. Breaks me that even during a pandemic (an insanely unifying moment when we feel our humanness together) they are aware their lives are a bit different. And then, in all this vulnerability I’m feeling so grateful that they’ve got me. They understand their movements can carry a heavy burden. They have a responsibility to their grandpa with COPD, their cousin who has had multiple heart surgeries and compromised lung tissue, or a friend with asthma or their own mom wading through cancer treatments. They understand things on a whole different life/death level. They understand on the most basic level that their decisions impact others. While this is not how I pictured teaching empathy, compassion and social responsibility,  there it is.

Gratitude and a Goodbye

Today we had to say goodbye and it wasn’t easy. We both knew the time was coming. This summer your green didn’t come back for long, not even on the tippy top of your glorious branches that stretched to the sun. In the last few weeks, I’ve been worried about you. You’ve been holding on. Stiffening up the little bit of umbrella you had left – and wrapping your limbs around the house – keeping us safe for one last transition. 

I think all the little forest creatures are mourning your exit, as  heavily as I. Why,  you’ve always been there – all of my years. Watching over us. My first memories of the lake – over four decades ago, you frame – your slim, almost elegant trunk stretched out into the sky for what seemed like miles. You were the last great big pine that close to the lake (besides the crazy leaner). All those years, you smiled down on us swimming, playing night games, catching frogs, peering through your branches at the starry night above. You welcomed us when we sang around fires, played bags, tied a clothesline around you.  You kept silently smiling. You gazed proudly as the house was painstakingly constructed (with your comfort in mind). And to show your appreciation you wrapped your big beautiful healthy canopy around the house to protect us as each board went up. You kept silently smiling. You were there peeking in on our wedding day, you were an incredible anchor for wedding tents, never so much as bending to the pressure. A stoic hero. You kept silently smiling. And then – you really WERE smiling as my mom chose a face for you. It seemed perfectly suitable. You kept smiling silently. You framed every single beautiful sunset from that perfect corner of the upper lanai. Whether these were photos or memories – they are locked into me. And I am so incredibly grateful for the years I got with you.

And I knew – our time together was waning. That pesky woodpecker was certainly speeding up your demise, like cancer mine. But, we came back for years – I waited. The summer of 2020, when I really thought it might be my last, I spread out my hammock beneath your branches, feeling your smile. I knew we were both in rough shape. But, then a little bit of green popped up on your tippy top and I could feel you just might have one more year in you. Funny, because my treatment changed at the same time and I was feeling a little less green, feeling like I might have a little more time left too. 

And this summer, when your tippy top never turned green – I knew one of us was not going to see another year. I tried to make you feel loved for one last summer – I am certain you felt it because I could feel your smile.  You kept silently smiling. I made sure to spread my hammock beneath you, hang towels on your clothesline, have little pep talks with you. (I could see you were barely hanging on). I even gave you more hugs than I have ever given you in all my 40 plus years. I noticed you more than ever, I took all the photos – both mental and actual photos. And then this fall, it was time. We had to part and I cried the day your face was pried off your sappy, elegant, slim trunk. I thought of all our time together. And then on an unseasonably warm autumn day – I wrapped my arms around you (for what I thought) was my last time. I cried and I thanked you, honored you for all your tireless love, your beauty and your fierce loyalty and protection. And then – delay. More delay. The day of your undoing kept getting delayed. I knew you were doing everything you could not to fall on us, not to tip right onto us. That damn wood pecker was riveting giant holes through your beautiful trunk.  Until the end, you persevered, you stood tall and protected us. You were so brave. 

And then the first snow came, I saw you smiling as the big, fat, flakes fell. I trudged out into the front yard that night to give you one last great, big hug – this was really our last one. I spun a little Pachamama web around you in the fresh snow to honor you.  And today, you came down. I am so glad we had that one last magical moment. 

You were magnificent.

Double Digit Celebration

Today is 10. Ten years ago today a young mother of three (ages 4, 5 and 7) was told she had metastatic breast cancer, terminal cancer. Back then, the life expectancy was 1-3 years. So, the young mother was told to live because she was definitely dying. 

Today that young mother seems like a stranger to the 10-years-older mother of three teenagers. Today she is a bit wiser too, she is certainly a whole lot more cancer savvy. Today she balances exhaustion and treatment fatigue with hope and cautious optimism while still (yes all these years later) mourning that life she thought she would be living. Today she is both celebrating the life she has been gifted these past ten years, while mourning what it has taken to be here.

So I guess you figured it out – I am that mother. When I look back at the past decade I feel as though we have LIVED. Oh boy, have we lived. Every road trip, every birthday, every baseball game, every choir concert, every basketball game, every dance, every dress, every learner’s permit – all the events take on a new meaning when you know life is so finite. All the moments look different when you know your next scan could take it all away. The next pain, the next twinge – it could be “it”.

For the past 3,650 mornings I have woken up and hesitated just for a second, hesitated just long enough to hope it’s all just a bad dream. But, it is in that moment that I feel the pull of my port, the stiffness in my radiated leg, the stiffness in my arms, the numbness in my toes, it’s this moment when I realize it is not a dream. Nope, this body has felt all those 3,650 days of continual cancer treatment. And that’s just the physical body, I can’t even articulate what confronting your impending death on a daily basis does to your mind. Oh, this mind of mine, what we’ve endured together. The close, suffocating horrors of tiny tubes, the scans, the waiting, the living, the dying, the living, the dying. Yep, a spin cycle of uncertainty on the most meaningful of things – life and how much more you will be granted.

So, on this day some  87, 000 hours later, I am tearful and I am grateful that my body keeps getting back up. Over 80 radiation treatments, hard chemo, maintenance chemo, infusions, injections, surgeries, biopsies, two ports and a picc line later – somehow this body keeps getting back up. I am honored and humbled. After a full decade I can’t even count how many brave, selfless, amazing women I have watched this disease ravage. My friends disappearing before my eyes – it is heartbreaking.  

This summer was the first time in my ten years that I was ready to surrender. After eight months of weekly chemotherapy and immunotherapy treatments none of the scans were showing even a little bit of good news. I was bald for the fourth time and thinking – I might leave this world before hair can return. I was thinking this was it. This body wasn’t getting back up. There were days that all I could muster was to drag myself to a hammock. The hammock allowed me to watch, hear and feel life happening all around me. The life I was too compromised to partake in. I used all the energy I had to deal with the end, so I could make the transition peaceful for all my loved ones. All those who have walked this tightrope with me for the past decade. 

On the day we decided to abandon my failing treatment plan, my caring, intelligent, all-female medical team decided we had a Hail Mary to throw. I am grateful that crazy, amazing, passionate scientists are creating the next drug, the next one that will allow so many of us more hours. Praying this is “THE” Hail Mary for me. And if it’s not? I decided this summer, my “heartiness” could probably keep me on this side of the dirt for a minute, even once we stop treatment.  And if not? I am blessed for every single one of those 87,600 hours. Every single one feels like a gift even the ones that brought me to my knees. Because this life, it is so beautiful, it is so one of a kind, it is so SO limited – it never ceases to amaze me just how far we will go for one more day, one more hour, one more moment with the ones we love.

This is something the last ten years have taught me. A whole bunch of loss, of big heavy grief can’t take away the beauty. In spite of all that horror this summer – I almost NEVER missed a sunset, a chance to float in the water, a chance to see friends virtually or otherwise, a chance to laugh. Every single moment one that I never thought I’d see. 

Oh yeah, the last decade has also given me MAD respect for all those badasses out there still living with cancer after reaching double digits.

Cheers to 10!

Earth Day love

Today is the 50th anniversary of Earth Day. I can’t believe it’s been 50 years since Wisconsin Senator Gaylord Nelson dreamt up the first Earth Day. As a matter of fact, I had no idea how much the day meant to me until I woke up and the memes, posts and news stories conjured up so many memories.

As a kid in Chicago in the early to mid-eighties I remember planting seedlings on this day (often the seedlings would double as a Mother’s Day gift), I remember going outside and picking up litter around our playground. I remember learning about Sen. Nelson from Wisconsin. (At about the same age – I remember being a card carrying member of Nancy Reagan’s “Just say no club” – I got the tshirt!)
I remember this day being exciting, empowering as a kid. Maybe it was because we got to be outside on the playground or planting those seedlings – fingers in the dirt? Maybe it was the collective pause in just enjoying the outdoors? Spring is certainly illusive in our parts – sun today, snow tomorrow kinda illusive. There was all this hope on teacher’s faces, on my parents faces, on adults all around. It seemed universal – who could dislike Earth Day? There was an underlying unity in saying thank you to this earth, our planet, our beautiful Pachamama that sustains so much abuse from us. But, here she was nurturing. It was almost as though the Earth could feel us trying, trying to do better.

Earth day reminds me of all those little things my dad preached throughout my childhood. His utter love for this Earth of ours. Sure there was the recycling, shaming litterbugs, growing a garden (and subsequently RAVING about how much better the homegrown veg tasted) repurposing items ( the man was upcycling long before it was cool). But it will always remind me of the way he loved a big old tree and it’s far reaching canopy and ability to protect. The way he shuffled in an almost full on skip when a tree seedling needed to be planted. The man couldn’t wait to get it in the ground and marvel at what this beautiful tree would look like in 5 years, 10 years…For a city kid, the guy always had a respect and love for nature and all things wild. Maybe his city upbringing is what allowed him to thoroughly love and respect the pristine, clean water we got to swim in Wisconsin? Or maybe it was the kaleidoscope of stars that were unveiled at the end of the pier on Berry Lake – a whole universe not accessible under the bright city lights? Whatever it was – I am thankful.

Happy 50th Earth Day. All I can ask is that the day continues to inspire hope amidst the chaos. The hope of doing better, the hope to keep trying, the hope of respecting this highly remarkable Mother Earth, this beautiful, forgiving Pachamama.

“If you think you’re too small to make a difference…try sleeping with a mosquito in the room” – Dalai Lama

Engineering a comeback is complicated

Everyone loves a great comeback story. The more I think about it, people don’t really care about the magnitude of the comeback? They just love a comeback story. Perhaps it’s more about the human spirit. The forward progress – has us all yelling – “Keep going, keep going, you got this”. Whether it’s the kid who has never made that shot on a basketball court or the adult that finishes a marathon hours after ALL the spectators have left.

This latest round of treatments has me begging for mercy and at times contemplating whether this is “it”. Is this where it ends? I’ve had a hell of a run – this year marks a full decade.  So many treatments, so many amazing memories I never thought I’d see or be part of.  So many phases with the kids that were preschoolers when we started this and now, now they are teenagers, they are driving, they are going to proms, they are getting first jobs…and I am soaking it all in.

But, this comeback. The comeback that I am still not totally certain is happening – man, this comeback is different in all the ways. Turns out ten years of cancer treatment will kick your ass physically but it’s the mind, the spirit that really takes the brunt of it.

Weekly treatments with a newly minted “triple negative” status have beat me down. Scans not favoring me as a victor have allowed all that uncertainly to sneak into my psyche. I’ve always proudly, lovingly accepted my status as an “exceptional responder”. Yes – I am one of the lucky ones. Each new torture method (treatment option) always had me rolling out like a champ. Yep – beaten and battered but still with two feet firmly planted on this earth (picture Rocky, a bit roughed up but still here again….and again! How many Rocky movies did they make?). This newest weekly chemotherapy/immunotherapy combination has been different. First off, there’s all the uncertainty -will it even work? Secondly, will it work fast enough? This has never been a concern for me – because along with being an exceptional responder I have also had the pleasure of being owner to a fairly disoriented cancer. You know the kind that takes a minute to get his friends onboard with marching forward and taking over full organs and bones. Like a little dysfunctional gang with questionable leadership. This new triple negative regime is a different beast all together. They have militant-style leadership ready to march to victory.

So all that gets into your head. Into your thinking. And while that is tough, I tend to lean into intuition more often. And it was what my intuition was telling me that has been freaking me out A LOT. The idea of a comeback seemed as far away as anything. My intuition, my gut – it was telling me to get my shit together because, yes, this could be it. This could be that illusive end that has been chasing me for a decade. You can only run for so long before you’re found. Now, I have to say the mouth sores, the body aches, the nausea, the inability to eat, to sleep, to get my ass out of bed for days at a time – pretty sure all those things were playing into my “gut”,  into my “intuition” as well.

The hope needed for a comeback felt so far away, so not available to me. I can’t say that I have ever felt this way. Ever. I found myself hesitant to fully drink in joy and happiness, love and possibility.  Distancing myself from all those things that make us human – connection, laughter, love. If I slowly eliminated all these things that make being human so freaking epic – well, it would be easier to leave. It would be easier for me to say goodbye. It would be easier for them, for my hubs and kids to peacefully, logically usher me to the next place. They could say things like, “She was ready” or “she’s at peace now” or “she’s out of pain”. Honestly, this is NOT how I pictured my last months? I pictured total excess. Yes, absolute excess in the immediate weeks, months and days preceding my impending death. Excess laughter, love, travel, friends, food – my final farewell. The idea of hope felt too cruel to even consider. It was easier to come to peace with the end for so many reasons. I had come to some sort of understanding with my impending death being sooner rather than later. Again, a damn good run.

I should probably insert here – no matter how dark or paralyzing the cancer or the treatment side effects have been I have had the joy of quite literally bathing in light showered upon me from friends and cousins near and far. They’ve lifted me up on their shoulders (picturing Rudy here – another epic comeback or maybe Rudy falls under “Possbility/Hope”). They’ve helped me fulfill my bucket list Oscar night get together in pajamas (even though I had to kick everyone’s ass with the winning ballot!!), they’ve driven my kids around, they’ve delivered meals, they’ve reached out in beautiful emails, texts, messages,  they’ve sent heartfelt cards. They’ve not given up on me. They’ve bought me crazy beautiful headwear for this bald dome, they’ve crocheted and knitted beautiful headwear, they’ve sent spunky socks, mouth sprays, ice packs, great books, notebooks, protein drinks, they’ve spent hours in the car driving me to chemo and hours with me at chemo.  They’ve offered their skills and energy with reiki and massage. And most importantly – they let me say the things I had to say without judgement, without trying to make it all better. They held buckets and buckets of space for me. And when I missed my family so much it hurt – these friends and cousins loved me unconditionally. They showed my kids compassion and love. And it’s been painful, so painful to see and feel all this love and keep myself numb. Numb because damn, that’s a lot of humanity right there man! I am trying to prepare myself to leave this place!! 
It took a two week break. Two GLORIOUS weeks without treatment. Two weeks in a row to feel me! I AM STILL HERE! For two weeks I have slowly felt my knees firmly hold me, my mouth sores healing. My stomach free of the bad kind of butterflies, the ones that flutter right before the anti-nausea med goes down the hatch. The me, that could wake up in the morning without begging to get right back in bed – exhausted and beaten. It’s been humbling and frustrating to feel every part of my body scream, rage against each treatment. This break, it was my savior. Familiar old friends have emerged – possibility and hope. If I have to leave – I gotta go on a high note. Imbibing in all THIS HUMANITY. ALL. OF. IT.

So – while I am still cautiously contemplating letting this hope in – the light, awe man – it feels so damn good, so freaking HUMAN. I miss this feeling. I need this feeling. Today – it was back to the “dreaded chair”, the chemo chair. But, I am happy to report something felt different.

 

 

An October to remember — A Terminal Case of Hope

What does pink mean to you? Or maybe a better question what does the month make you think about? I’ve had the pleasure of having many reach out to me as October is upon us. Just checking in on me. I wonder if I am what they think of when October rolls around? Whatever the […]

via An October to remember — A Terminal Case of Hope

An October to remember

What does pink mean to you? Or maybe a better question what does the month make you think about? I’ve had the pleasure of having many reach out to me as October is upon us. Just checking in on me. I wonder if I am what they think of when October rolls around? Whatever the reason – the love is welcomed and humbling.

I have a unique perspective living with Stage IV breast cancer for almost nine years. November 1st will mark a day that I never thought possible – nine years since I was told that I have terminal cancer. My life expectancy at that point was 1-3 years. I was 32-years-old with three small kids. I am grateful. I am grateful that research has provided options. As a matter of fact, my current treatment didn’t exist nine years ago.

Over the past nine years I have had the privilege of meeting some of the most brave, amazing, compassionate and determined women living with metastatic breast cancer. That’s stage IV terminal cancer. They are all living in varying degrees of grief and illness every day. They are all in constant treatment while working jobs, raising families and living with knowing that this monkey will always be on their back. They will bear the burden of marching forward while mourning the pre-cancer life they led. These women have provided me with so much inspiration I can’t even begin to articulate the amazing grace I have witnessed. Right now I am thinking of so many. 

My beautiful sister in Syracuse, the one and only Mrs. L. She changed my life with her grit and determination as she endured mind numbing treatments all to share more time with her beautiful son and incredible husband. She’s no longer on this earth. Or the tough-as-nails Ms. B, who was a single professional woman going through treatments while continuing to shatter ceilings in her professional life. Ms. B lived big and joyfully – December will mark 4 years in heaven, I can still hear her laugh. Or the sweet loving Ms. S who was divorced raising two beautiful kids with the help of her parents. Each day she woke up and endured this disease to see the next (maybe her last) afternoon at the beach with her babies. She was stunningly beautiful with a HUGE heart. She’s been an angel since 2016. Or the radiant, gentle Mrs. W who calmly, thoughtfully shared pieces of her treatment to educate  – all while loving every minute with her two daughters and loving husband. This summer marked three years without her on this earth. Her family continues to live a life of service contributing time and money to BC organizations. And more recently the soft-spoken, big-hearted, single mom Ms. R who left this earth yesterday. She left behind the most precocious, hilarious, kind, loving five-year-old that I’ve ever met. There are so many more. Sadly, I could go on for days.

Then there are the women who have somehow found unicorn status. Yes, you read that right – unicorn status. These are the women who ask their oncologist about this or that. And the answer is, “We don’t know? No one has ever lived as long as you on that drug? We don’t know because no one has had this exceptional response on that drug?” Oh yes, my pachamama soul sister out on the West Coast – the compassionate Mrs. B – she gets it,  the gratitude for life while balancing the struggle of side effects and treatment while raising a family. Or the determined Mrs. M who travels the world advocating for breast cancer patients while balancing treatment and side effects.

And then – there are those that are recently diagnosed. The women who welcome your cancer expertise as a long-time patient. The women who are dragging themselves through this new world of cancer treatment, this new world of uncertainty. It doesn’t matter if it’s stage O or stage IV it is terrifying and has a grip on every aspect of their lives. The lovely Ms. K comes to mind. Living her best life traveling, writing, while grappling with a second cancer diagnosis. Or the incomparable Mrs. S finding her footing while raising kids and balancing treatment.

And of course, there are those women that have their diagnosis and physical treatment in the rear view but are still grappling with the body the disease has left behind and the fears that grip them. The amazing Mrs. E who reached out to check in on me today comes to mind. Or the fiercely resilient Mrs. P who leapt and moved her family across the world for a change in perspective. Or the beautiful Ms. K who is always near and dear to me as she finds her footing in her post- cancer life (can it ever be post?!?). There is the soft, sweet, determined oily goddess Mrs. V who is raising four kids while finding a stunningly beautiful balance between eastern and western medicine. And then there is the incomparable Ms. W who decided to launch a non-profit organization after her diagnosis. An organization to help all these bc patients to find themselves after cancer, in the midst of cancer or while living with cancer.

These are some of the women I love, I have loved and lost throughout my nine years. These are the women that I could share my fears with, these are the women who understand scanxiety, treatment fatigue, headaches, stomach aches, loss of mobility, loss of hair, brain fog, lymphedema, new treatments, running out of treatments, fear and anxiety for themselves, fear and anxiety for their loved ones. These are the women I could get on the phone with and go straight to the heavy shit. How are you doing? How are you REALLY doing? Cut the shit – it’s me. These are the women that have and have had an innate ability to make me feel accepted. These are the women who offered genuine compassion in a judgement-free zone. My cancer wasn’t the elephant in the room, it wasn’t the thing we didn’t talk about. Hell, it was front and center and we connected and loved each other in spite of it. And when cancer takes me down a rabbit hole – they always come looking to fish my ass out. They knew and know when to push. They knew and know my silence is fear and isolation. I know and knew each time I connected that one of us was going to have to say goodbye prematurely. We both knew it. But, that human need for connection is so strong, it knows no limits.

So this October – To all the ones I’ve loved and lost I will make sure to love those you left behind extra hard this month. I will make sure to let them know “I SEE YOU. YOU MATTER” and your loved one mattered too. I will let them know I am sending peace and maybe a funny story about “their person”. And for all the ones that are still here – trudging through their days – bathing in the light that is another day while balancing the darkness of managing their disease, I SEE YOU. I ADORE YOU and I am so GRATEFUL and PROUD to call you my friend and my family. THANK YOU. I will take October to reach out to as many of you as I can to show you my LOVE and APPRECIATION.

Radiation Day 5

Radiation day 5

I’m back in the hot seat –  quite literally. I’ve been struggling to update this blog because what is there to say? I’m still here, I’m still doing this. 

I don’t feel shiny and unicorn-y and courageous. I don’t feel any of that lately. I feel worn, tattered and a wee bit dull as I drag myself to daily radiation treatments. 

I find the further I go – the more I turn inward. The more my energy needs a reprieve. The more lonely it gets. 

And last week just as I was putting on my hat-the one that says put your head down and get through this…the most wonderful little surprise happened. My lovely radiation onc (who has been with me all the way since 2011) stared me right in the eyes and said – “I see you”. Nah, she didn’t use those words but that’s what I heard. She sat me down and she acknowledged all this. All these years, all these treatments, all these scars, all these side effects, all this trauma. And in that moment I realized it’s ok to turn in. It’s ok to rest. It’s ok to resist the urge to PUFF up and tell cancer to eff off. I’m tired. I need a break. I need a quality churro (thank you steroids for the pain management and the absolute NEED for carbs!), a cup of coffee, a chat with a friend on the lanai, I need a good book, a good song, a minute. Damn-I need a nap or several. 

I need good vibes and understanding as this palliative piece is draining me. I’m doing my best to honor it all. Some days I feel as I am literally dragging myself out of bed. I’m doing my best. But, the light is quite literally impossible to bathe in without acknowledging the dark. 

The excruciating pain in my leg is easing – I’m not sure if it’s radiation or the steroids. I suspect it’s steroids. I’m overjoyed I can walk without wincing in pain. 

So – as I navigate the remaining radiation treatments I just want to say thank you for the good vibes, the understanding, the delicious chicken pasta Parmesan, the wonderful happy oily blends, the texts, the memes and all the good shit. 

A year of changes

I’ve been putting off updating this blog. Putting off taking words to paper (computer screen). The past year has been so life-altering. Putting even parts of it on paper seems to make it real and I really hate to upset this very joyful balance that we have recently found. To be honest I’ve been enjoying the peaceful afterglow of absolute chaos. A year’s worth of chaos and change all culminating to this place. When I really think about it, it’s way more than a year’s worth of chaos. This suitcase has been with me for some time and I’ve finally started to unpack it. Feels like a dream. A little too good to be true. But, the past year has taught me that maybe we should just revel in these little miracles instead of waiting for the bill. Maybe a big strong inhale – grateful and blessed right now in this moment better suits a joyful life? Suck it in.

A year ago this month – I had the opportunity to head to Peru with an organization called A Fresh Chapter. I leapt at the opportunity and with the help of a whole lotta generous souls I found myself in a whole new world in Lima, Peru. For two weeks, I was far away from my everyday reality and surrounded by 23 others affected by cancer (my tribe). I volunteered daily and saw another way of life. Volunteering in another country allowed me to get out of my head (funny considering that I didn’t know the endless loop I had created). I stopped planning the carpools, the dinners, the grocery runs, the cancer treatments, the scans, the every.single.detail. And you know what I noticed in the moment? That despite extreme poverty around me, I was witnessing, I was feeling, joy. The people of Lima, Peru showed me so much joy. And a different kind of joy – an untethered, calm, beautiful, simple joy. It was a back to the basics – stripped down appreciation for life – for every little moment, even the gritty ones.

 

It allowed me to truly experience the moment. Honestly, this was new. Eight years of cancer treatments, loss, grief – it had changed me. This tribe of mine, they accepted me – broken, exhausted, uncertain. They actually embraced me. They showed an unconditional love that makes my eyes teary and my heart full. Each one of their beautiful, imperfectly perfect souls has lifted me up during this past year of changes. While only we can make the changes in our lives, having a circle of support like this tribe it changes what is possible.

 

And you know what else I found – a whole bunch of peace. That illusive emotion. I felt it strongly. I felt peace knowing that my family, on the other side of the equator, they could live without me. Yep, I found so much solace knowing for two weeks they were ok. When my time comes, I know they are going to be ok. Why I didn’t even know I needed that? I found peace knowing my deep grief was accepted by this tribe, embraced – instead of swept shamefully under the rug.  I found that the wall of isolation that cancer creates, it can be penetrated by the right people, the right circumstances, the right organization, the right time. I’m filled with gratitude and my tribe, they are family.

 

So, how did I get here a year later? Turns out, my time in Peru taught me that I might have a bit more life in me. That paralyzing feeling of not being able to make changes. That paralyzing fear, that fear of the “other shoe dropping” – I learned to push it away and move forward. I must say, I am a work in progress – onward. My lens changed. Yes, I still had possibilities. I still had moments to create instead of worrying about the moments I wouldn’t get to create. Or standing still hoping that the universe didn’t notice that I was still here after being diagnosed with a terminal cancer eight years ago (GEEZ Kate, don’t draw attention!).

So, one year ago I landed back in the USA and began plotting the changes. My hubs happily embraced the change, the possibilities and you know what – he took my hand and we leapt! We leapt full of fear and uncertainty, we leapt in spite of  it. We leapt. I need to stress how very, open-minded and full of love my little family has been through this metamorphism.  We set sail on a life changing year. We sold the only home our three kids have ever known. We painstakingly negotiated to buy the other half of my family’s lake house. It was so hard. Hard actually doesn’t even describe it. There are no words. Every time I thought we needed to quit, there was someone there to push me forward, to help me reclaim my Peruvian vibe. We moved the kids and embraced country living, living on a lake.

Surrounded by a ridiculous amount of beauty each and every day has certainly shifted my lens. Waking up to this type of tranquility every day does that. Beauty, miraculous beauty assaults the senses first thing. Quiet, calm it’s almost overwhelming the quiet, the solitude. And then there is this glorious little town that has adopted us. They have embraced our little family, they have helped show us the ways. They’ve so very generously let us be a part of their way of life. In many ways, this town reminds me of my Peruvian tribe – they’ve accepted us, judgement-free with open arms. This type of warmth is pretty special all by itself but, when you are moving three teenagers to a new place it’s magnificent!

Grateful, blessed and humbled are just a few words that come to mind.

Today was my first time making the trek to a new hospital for cancer treatment. While we’ve lived here since late July ( I had been driving the hour back to my old cancer center the past few months) today, this one single act seemed to clearly define this life altering move for me. I suspect the kids felt this immediately and if not, those first days of school sealed the deal. And I know my very patient hubs is feeling it daily in his commute.  But, for me – this land that I have been coming to all my life well, it has innately felt like home.