Tag Archives: thyroid cancer

Silent

23 Mar

If you read my last blog you know I had the flu almost exactly a month ago and when the fever went away after 8 days, my voice slowly went away with it. I thought it was from the excessive coughing and it still could be but I lost my voice for about 10 days before it SLOWLY squeaked its way back. A week ago, so 3 weeks post flu, it was sounding almost normal for a couple days. In fact, I had breakfast with my mom and she said she could hardly notice my voice had been struggling. Quickly after that, a little bit of cough came back, and my voice was trying to leave me again. I saw my laryngologist this past week and after scoping my vocal cords, he did not see any permanent damage from the coughing (thank goodness) So what is going on? This leads to today, it’s been another few days of a raspy voice that comes out only by pushing but still not clear, comes and goes. I’m doing the vocal exercises given to me by my speech pathologist every hour and only speaking when necessary. Vocal rest when I can.

Back when my laryngeal nerve was cut during surgery permanently paralyzing my right vocal cord all I thought about was the cancer, which at first had a bad prognosis. My kids were young (5,7,10), and yes, I grieved the loss of my singing voice but my focus was being alive to watch my kids grow up. As time progressed we made adjustments in the house, everything and everyone including the kids got more quiet. Everyone whispered to me, the television was rarely on and if it was, the volume was kept low, as if reducing the noise would bring my voice back. Mind you, I couldn’t even whisper and this lasted almost 6 months. Today, I’m going on 3 weeks with little voice, no voice, voice decently back, and now, strained voice…all from the flu virus? Kids are all grown and out of the house, but it’s quiet again. Unlike before when I felt confident and hopeful and singularly focused on surviving, today I’m nervous, frustrated, and questioning why of all the things, my voice is teasing me and keeping me in a place of apprehension. Now I’m leaning in, trusting God with His plan and not my plan (I wrote about this exact thing back in 2010?). As Kate Bowler said in a recent Lenten devotional, ‘not confidence, not clarity, not spiritual sparkle, but need.’

Here’s what I’ve learned in these ‘silent’ or quiet days:

*The world is noisy. When I got the flu I felt terrible; fever, headache, body-ache, etc. which meant very minimal time on the phone, couldn’t read or do any type of screentime including television, social media, phone calls. Then as I started to recover without my voice, my husband lowered the volume, would have to look at me to try to read my lips and interpret what I was saying-and it’s still kind of like that. I’ve also had to minimize time looking at a computer. Did I mention when I had the flu I passed out on the bathroom tile and hit my head? So yeah, staring at a laptop or even a book would give me a headache and make me a little dizzy. Quiet took some time to get used to but a break from the noise and overstimulation of screens and social media? AMAZING, you should try it. It gave me chance to actually listen and process MY OWN thoughts without the influence of well, the 1000+ people I follow on Instagram.

*The voice is powerful. This was already obvious to me from my past experience of losing my voice but now, with my voice coming and going and my push for vocal rest, I’m intentional about when I speak and the words I need to say. Answering questions? of course. But saying things just to take up space or fill gaps of silence? I don’t have that luxury right now. Just like the noise mentioned earlier, sometimes people have too many words from needing to take up space; from insecurity, from lack of noise, to be seen? I know as I’ve gotten older and maybe even from menopause, I can’t keep my mouth shut so I overshare or over-defend myself at times. This was/is a nice reminder to be intentional about my words and keep most of the ‘filler’ out.

*Rest is an act of resistance and renewal. I read that somewhere, can’t remember where but I totally get it. We live in a noisy world but we’re also busy. I think sometimes we feel the need to fill all the minutes of our days to be a relevant and significant part of society. It’s a sad statement that we have to get sick to remind our bodies that rest is good. When I read that quote I understood the renewal but resistance? Yes, resistance to society’s push to be busy and to find your worth in the things that you do, even if the doing drives you to caffeine in the morning, a glass (or 2) of wine at night and ultimately exhaustion.

I hate that I’m struggling with my voice. It brings back memories of my past with no voice, and of the cancer that took a vocal cord in the first place. I’m feeling all the feelings I had; not being able to talk on the phone, make and cancel appointments, go through a drive thru, can’t say thank you or hello, say ‘I love you.’ I have to remind myself I’m not there. I still have a voice, it’s just weak and raspy. It makes me sad and nervous that I’m still struggling, but I’ll be patient trusting it’ll fully be back soon. I recently watched a short film (18 min) on Netflix called The Singers which was an Oscar winner this year. I HIGHLY recommend it. I won’t spoil it but it’s about connection and community by surprise through the power of the voice. I cried. Please watch.

‘True abundance is not just the good stuff. We get it all. Every drop, every dreg-the good, the terrible, the ‘who even knows?’. Daily life proves to be a bit too much. It’s too frantic, too full, too bruising for our tender hearts. It contains more beauty, more delight, more awe, and more eccentricity than we can possibly hold, but we’re willing to strain our arms and hearts trying…This is the abundant life. We get it all.’~Shannan Martin

I decided to go back to where this blog started and share today’s lipstick. Today I wear Fenty Beauty Gloss Bomb Stix High Shine Gloss Stick in Riri which is a cool rose mauve. On the web it looks like a deep plum mauve color but on me it’s more a medium/lighter rosy mauve. The formula is highly moisturizing and smooth and is a cross between a lipstick and lip balm. I really like it! I wear it because it feels good but also it’s a beautiful spring color and reminds me of hope. Cheers!

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Bring Back the Joy

4 Mar

Months ago my husband pointed a couple things out to me that I did unconsciously all the time; one, I hum a few notes randomly whether it’s picking something up, grabbing something from the fridge, sitting down in a chair-random. Two, when music plays even if in the distance or if he decides to make up a song, he says I can’t help but start dancing or moving my body. Hmm. Throughout my youth and into college music and dance were my passion and great loves. I grew up taking dance and piano, singing came naturally for me. In college I started as a music major but as a first gen immigrant, switched to the more responsible science route. I continued singing into adulthood at church, events, weddings, funerals, even radio jingles. Then it stopped.

During my first round of cancer surgery my right vocal fold became permanently paralyzed and the singing stopped. The third time with cancer, after 3 surgeries and 7 weeks of external beam radiation, I developed left arm and hand neuropathy from damage to my brachial plexus-the piano and dancing stopped. The grief over losing my music felt heavy so I stopped participating. Music turned to podcasts and books, I couldn’t watch musicals or singers try out on American Idol without feeling something heavy on my heart. Even watching the worship leaders at church was gut wrenching at times. Over the years the grief has softened, but it bubbles up sometimes.

A couple significant things happened over the past couple of weeks. Let’s talk about the flu. Last week I had the worst flu in my life. I mean, I don’t remember ever being that sick (outside of cancer of course); high fever, body aches, migraine headache, cough, killer sore throat for DAYS-8 to be exact. Then suddenly as quickly as it came. It was gone. I woke up one day, no fever. The next day, sore throat and headache were gone. Unfortunately, my voice has not returned and it’s been days. Now, for regular folks this would be ok having complete confidence their voice would return. For me however, I have PTSD. Remember the first cancer surgery and my paralyzed vocal cord? Yeah, I couldn’t speak for about 6 months, just air. Back then I had lots more to worry about (kids, still having cancer), so not having a voice was hard but not entirely my focus. Now though, wandering through the quiet house, smiling and snapping at the dog, pointing and hand motions with my husband…I can’t describe the feeling of helplessness. Not to mention my job is also speaking to people in-person or virtually. I miss my voice and it scares me not to have it.

Back to the singing, dancing, joy part. Last week was also 3 years since my father passed away. It has felt both like it was just yesterday and also a long time ago. My dad was probably my single biggest musical influence in my life. He always played music in our home. I grew up with ginormous speakers in our family room and my dad would put classical music on the turntable and pretend he was conducting an orchestra. He was always singing, answering questions to some made up tune, and was always humming a few notes here and there. In his last week at the hospital before hospice he was pretty much non-verbal and mostly sleeping so I decided to look for Spotify stations of music I knew he loved. Classical stations but also oldies-Nat King Cole, Johnny Mathis, etc. I started singing When I Fall in Love close to his ear and with his eyes closed he started singing with me. I know in his head he was singing it perfectly as a duet with me, I could see it in his expression and when the song ended, he smiled. I have the sweetest video of this moment that I will cherish forever.

So there it is. What I thought left me and no longer brought me joy was just grief. The music didn’t stop, I stopped it to avoid the grief. Now, I can just rest in it and be grateful realizing that it has carried me all along. My dad and I share the humming and now when I catch myself (because now I’m more aware of it-thanks Jim), it makes me smile. My voice? Kate Bowler says ‘Honesty is a casualty of illness.’ I’m nervous I don’t have it right now and it is bringing me a flood of memories from cancer’s past but I know it will come back as I give my body time to rest and heal. I saw this pic online and it was captioned ‘seeing the melody’, made me emotional.

What brought you joy as a child or young person? Go back there, sit with it awhile. We all need some positive triggers right now.

‘In the accumulation of loss, retain an affinity for joy and know that some truths are only illuminated by tears.’~David Gate

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It Always Catches Up

8 Sep

It’s been over a year since writing this blog.

When I was diagnosed with Stage 4 metastatic cancer in 2017, I thought it was the worst thing in my life that could’ve happened. This was my 4th recurrence, my youngest was in middle school, my others kids were not much older. I spent lots of time staring and hugging my kids as much as they would let me, and of course, crying and praying not just for more time, but at the very least, to see that youngest child graduate high school. Two years after my diagnosis, that youngest child had a devastating stroke which left him right side paralyzed and needing brain surgery to remove a tangle of arteries and veins in his brain. 2020 brought the global pandemic which messed everyone up… in the world. Then I became an empty nester with all the kids far away, and in 2022, just after Thanksgiving, we rushed my dad to the hospital thinking he was having a stroke because he kept dropping his fork at breakfast. He walked himself into the ER and 2 days later he was confused, couldn’t verbalize properly and was diagnosed with CNS Lymphoma quickly taking over his brain. He passed away 11 weeks later in 2023 and then our beloved 7 year old dog who had been by my side throughout the heaviness of my diagnosis, my child’s side after bringing him home post stroke, the joy of the family while on lockdown, who comforted us while we stayed around my dad in home hospice, died suddenly just weeks after burying my dad. This year started for me with a sudden lay off on a Monday afternoon; no warning, just a call letting me know I, along with my boss and others, were done after a reorganization. These were the big ones but I can tell you there were many other frustrations, heartaches, and not so great things that happened weaved throughout the days, weeks, months, and years.

In my head, I had to keep going strong with a smile on my face. I worked hard, kept my chin up, started and ran The Lipstick Journey and went to events and pop ups, I volunteered, went to work, kept smiling and ‘people pleasing’. Motherhood is 24/7 so there were still meals to plan, dances, college drop offs, FAFSA forms, travel sports, etc. Becoming an empty nester in 2021 around the same time menopause hit brought grief to a whole new level. The sudden quiet house with mostly empty rooms after years of chaos hit me especially hard because I have cancer and how would I get more time with the kids if they were leaving?…Especially after the heels of the pandemic; stuck all together for a long time and then they were gone. Cancer feels like a ticking time bomb and the emotional toll of that as the base and all the other big things that happened took me and my energy down. Social media took my thinking brain away with too many continuous dopamine hits leaving me in a stupor. Grief caught up because it never really goes away. I stopped writing.

The good news. My cancer has been stable for 8 years. STABLE. EIGHT. YEARS. Those pesky nodules on my lungs haven’t grown or spread. Yes, they’re still living, but so am I. Fun fact, today is scan day; every 6 months, still. My child who had the stroke just before his junior year of high school? He made a full recovery and graduated college with honors this past May and my wish to see him graduate high school had me seeing him graduate college (obviously there were tears). The other kids are living their best lives and although none of them are near, I am now in a place of gratitude for raising amazing and independent human beings. There will always be hard days when my mama heart aches to be near them but mostly I’m excited for them and grateful they are good people and are independent. We got a puppy who will soon turn 2 and he’s the best doggie. I got another job quickly after the lay off and although it’s not my ideal situation it has been a blessing. Although I loved The Lipstick Journey lipstick company, I decided to close after 5 years. It was an amazing run and I needed it. The stories of other cancer thrivers who reached out to me lifted me up and the connections I made and support I felt, all incredible. No regrets and still wearing the lipstick. Just like heartache and sadness weaved through, there were plenty of joy moments-sometimes I just had to look a little harder. ‘Our circumstances shouldn’t narrate our stories.’~Lori Gottlieb

Ok too many words. I haven’t written in over a year but I FINALLY feel like I’m coming back to myself and I’m excited getting to know this current version of me. I feel joy and hope breaking through the muck that’s been weighing on me. It took this whole year (maybe even more) to get back here. How? Waking up EARLY and keeping a morning routine of silence, prayer, gratitude journaling, and reading poetry (you can’t read a poem quickly). I take long social media breaks and I can LITERALLY tell the difference on the days I’m not scrolling. I’ve mostly only said yes to the things that I want to do and that bring me joy. I try really hard to stay in the present moment, not worrying or planning the future and not dwelling in the past. Living with cancer has made this part easier. When you understand the brevity of life, everything becomes a little more special. Life will always be filled with inspiration AND tragedy, good AND bad, joy AND grief—all of which forms us and we carry in our bodies, no one is exempt. Kintsugi is the Japanese art of repairing pottery with gold; the cracks are part of the object’s history making it more beautiful for having been broken. My comfort is through all things, God is with me, He is the gold holding me together and it’s what’s beautiful. David Gate said in one of his poems, ‘In the accumulation of loss, retain an affinity for joy and know that some truths are only illuminated by tears.’ There have been many tears but despite heartache there are many moments of sweetness if we can just sit and open our eyes.

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Stable, Year 7

31 Aug

A couple of weeks ago I had my scans to check on the multiple cancer nodules housed in my lungs. It has been almost exactly 7 years since I was diagnosed with Stage 4 metastatic cancer and I’ve had scans every 3-6 months for SEVEN YEARS. STABLE. I usually greet the news with overwhelming relief and crazy joy but this time was different; still relief but with maybe more contemplation? I’m still processing the news and why the ‘celebration’ felt different. I’m thinking about what it has meant to be stable all these years and how it’s changed me and my perspective, how I’m living, and maybe how I want to live going forward. I cry thinking about how the word cancer first changed MY LIFE 16 years ago and how the words ‘Stage 4’ changed ME 7 years ago after wrestling with cancer two other times in between. 

We talk about gratitude a lot and I want to say I’m more grateful, but am I? I don’t want to have to think about cancer anymore. I don’t want to wonder if my next scan will still be stable or if I feel ‘off’ one day that my cancer is spreading, or if it’s humid and the air is heavy and I have a harder time breathing if it’s more or growing nodules in my lungs. I don’t want to wonder if I will make it to a child’s wedding or meet my first grandchild. I also don’t want to grieve what might be and miss what is. I know none of this is in my control and that there may be other factors that take me out, but cancer is what’s in front of me or should I say inside of me. I’m tired of the cancer dance. I’m tired. But yes, I’m still beyond grateful because without the weight of it, I would maybe miss the magic around me or waste even more time and air stressing about stupid stuff. I’m still tired.

The concept of impermanence is hard but living in duality may be even harder; making decisions can feel heavy, caught between I don’t care and I care too much. Talking and saving for retirement and but can’t focus on anything but today, planning for the future but wondering about the scan results six months from now, etc…it stinks. ‘I don’t care’ is my brain saying ‘I can’t process that right now’ or ‘does not compute’.

I’ve changed. Quality time has always been my top love language, but now it’s exaggerated. If I have a chance and the funds to see my kids, I will go. I want to surround myself with people whose joy is contagious. I crave community because the richest person in my book is one that’s filled with love, laughter, and time with family and friends. I will continue sharing my story and being vulnerable in hopes that it allows whoever else to be vulnerable with theirs. We learn from each others’ stories and vulnerability makes us more human. The perfection we see on Facebook and IG is mostly fake, fills us with fake longing, sometimes shame, envy and sadness that we don’t have what the picture shows us when truly the picture is just a picture. It’s flat and missing the three-dimensional parts of peoples lives. I’m softer, my heart feels like mush and I cry sometimes over the simplest of things. I’m also harder, I’ve learned to say no a little more without the guilt behind it. I don’t want to struggle or people please anymore to get attention or be included because time is too valuable and how exhausting is that?

The world feels like it’s on fire; people are more short tempered, judgmental, angry, self centered, and just ‘harder’ or hard hearted in general, unwilling or afraid to cross the lines or even share the lines of what they think how things ‘should be.’ Well, we all suck and I’m no better, but I don’t want to be one of those grouchy people, it’s such a waste of precious air.

I’m learning to embrace the impermanence of life even though it was by force (or I should say by diagnosis). No one gets to live forever. In a book I recently finished it said “That time always ends a second before you’re ready. That life is the minutes you want minus one.” -The Invisible Life of Addie Larue, by VE Schwab. There’s no best time, no one’s ever ready. 

Hope. Hope to me shows up when an adult child texts me that they love or miss me (without my prompting), when someone shows kindness, when my dog looks at me and tilts his head like he’s paying attention and understands everything I say, etc. Hope is tangible, it’s simple and it’s always in your face when your heart is broken enough to let the light in. My heart is broken. It’s not a bad thing, it just means it’s tender and has lots of space for love, joy, hope, and empathy. Yes, grateful for that too.

Life is short. God loves me, Jesus carries me, that’s my solid. I’m reminded of His love and goodness constantly. My cancer is stable. 6 months from now it may not be, or maybe it will be for the next 20 years, who knows? Today I will breathe in life and take this word stable and add it to my bank of hope for however long it carries me.

‘Life is brutally hard & still holds holy beautiful holy moments & we are all standing on the edge of more joy, more wonder, more awe in God, who carries us through all the waves of heartache and heartawe, and into the expansive love of His heart.’~ Ann Voskamp

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5

14 Jul

Five years.

Five years ago this month I got the devastating news that my cancer was back for the fourth time, but it had spread to my lungs putting me in the category of Stage 4, Metastatic thyroid cancer with distant metastasis. This is rare, occurring in less than 10% of thyroid cancer patients. The statistics are not great; 50% gone in 5 years, 90% gone in 10. I did molecular testing on my tumors and they showed the BRAF v600 mutation (lots of science) but basically, cancers with this mutation tend to be more aggressive. For the first 2 years post diagnosis, I got scans every 3 months, and since scan after scan showed stable disease (tumors still there but not really growing), my scans were spread out to every 6 months alternating between CT and PET scans.

What. A. Ride.

Last Saturday I had my 6-month scan which was delayed from June because of a nationwide CT contrast shortage (yes, there’s even a supply chain shortage on that). Monday, my oncologist sent me a text that everything STILL looks good!! STABLE! I made it into the 50% of patients STILL HERE after FIVE YEARS (Although I know there have been major strides in cancer care in the last 5 years so hopefully the stats are much better now). 5 years ago my youngest son was going into the 9th grade and all I longed for was to be alive at his high school graduation and here he is about to start his sophomore year in college. Now the longing extends to weddings, and dare I say grand babies?

How has my life/perspective changed in the past 5 years? That’s a tough question because my cancer journey started 14 years ago. I feel like cancer has been riding my shoulders forever but the last 5 have been the hardest. Not only the statistic constantly looming in the back of my mind, but that youngest child of mine had a stroke 2 years after that diagnosis, then the year after that we headed straight into this worldwide pandemic. Moving into 2022, I’ve really struggled. The whole ‘being brave and strong and keep pushing forward’ seemed too much and all the stored grief upon grief punched me straight between the eyes. I learned that the research done by Elisabeth Kubler Ross on the stages of grief were mainly on dying people and that we could not apply those same stages to the living. The living has to LIVE with that grief because it is entwined in our bodies, hearts, minds, etc. There is no ‘check the box and be done’ checkmark for denial, anger, etc leading to acceptance, while we’re alive we just weave in and out of those in no particular order. So, some of the lessons?

  1. Grief lives with us always, but it teaches us about ourselves, as well as our capacity to love
  2. My faith has become so simple; I believe, and love God and I want to love how Jesus loved. That’s it. Faith is not a building, denomination, or ‘being religious’. (I have lots of thoughts about faith and maybe I’ll write more in a later blog)
  3. Love lives in the small things, the in between moments of eye contact, lunch dates with friends, a hug, an encouraging text, etc
  4. Life can change in a blink of an eye
  5. You can’t stop time so make the most of those minutes. Stay present and notice.

Those are just a few things that come to mind. This year in particular I’ve been the angriest, and the saddest more than I’ve ever been. On a recent podcast, the speaker compared life these days to a tsunami. After the big earthquake a tsunami happens, then it’s waves and waves of aftershocks and destruction, but over time, the waves die down, then things slowly heal and become normal again. We just went through and are going through a global pandemic with the first hit in 2020. The aftershocks and waves are still happening giving us no time to heal; not just waves of Covid surges, we’ve had a war start in Ukraine, civil unrest, mass shootings, so so much. My ‘earthquake’ happened in 2017 with my Stage 4 diagnosis. We have had no time to heal.

Look up

I don’t mean to be trite but one day I was driving in my car, crying (which has been my norm over past months), and completely overwhelmed. After stopping at a stop light, I looked up. The sky was so blue and vast, and I was reminded of how small I was, literally just a speck in comparison. If you haven’t seen the latest images from the James Webb Space Telescope look them up. The universe is SO BIG. Looking up helped me feel better. Looking up reminded me that the God I believe in is SO BIG and that I am so small. That there are numerous unanswerable things in this world and it’s all a hodge podge of joys and sorrows but ultimately, I am so small in this ginormous universe and have very little control if any, of much of anything.

I listen to a podcast hosted by Kelly Corrigan called ‘Kelly Corrigan Wonders’. Every week she does an interview one day, reads an essay she wrote another day, then reads someone’s obituary on yet another day. All of her podcasts are great but the 5-10 minutes reading of someone’s obituary has had the most impact on me. Every week I get to hear a summary of someone’s life written by someone who loved them. All of them speak of the type of person their loved one was along with a smattering of examples like ‘he/she was the life of the party’ or ‘they would literally give the shirt off their back to a stranger,’ but what makes me catch my breath are the simple memories and the small moments like, ‘she made pancakes every Sunday’ or ‘I always came home to a hug no matter what.’ None of the memories spoke of grandiose events or big family trips. Love is in the small moments. What would you like a loved one to write in your obituary about you? I think about that all the time now and try to be that person while I’m living.

I live with Stage 4 cancer as a chronic condition, much like someone who has diabetes or Crohn’s disease. It feels like a double life or split personality most of the time. Acting normal, working out, going out with friends, enjoying life, but every farther future decision is tinged with the question ‘but will I still be here?’ While every daily decision as tinged with ‘is that how I want to spend my minutes?’ or ‘Does that buy me more time with people I love?’ For now, I don’t get to say that I fought cancer and won, the before/after narrative for me is before/during. But gratefully saying I’m stable and ALIVE after 5 years is more than enough 🙂

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Hello 2022

19 Jan

It has been a LONG time since I’ve written a blog post and honestly, I wasn’t sure if I would ever write another, but here I am. The last blog I wrote was right around the time Alex left for school making us empty nesters. Since then, I’d like to say that I’ve enjoyed all this ‘independent time’ not having to think about meals, sporting events, clothes for homecoming or prom, etc., but I haven’t. For the last 6 months I’ve been mostly sad. Not only are we in what seems like an endless global pandemic, but I also have cancer; both pointing toward a daily life of uncertainty. Time is my love language so having the youngest leave the house meant that that phase of motherhood and seeing them more often than not, was gone. Cancer already opens your eyes to your mortality so any less time with those you love is exactly that, less time. HOWEVER, I do realize that our job as parents is to grow independent kids and cheer them on as they learn to fly, so I guess I’m sad AND happy.

In the past 3 months I have been to 2 funerals; one a friend from church and the other, wife of a childhood friend that I grew up with. Both women younger than me, both moms, and both passing away from cancer. A friend of my husband’s passed away suddenly, another friend’s dad passed from cancer, and another friend’s young (younger than me), healthy boyfriend passed away just last week. All within the past 3 months. Time is our most precious commodity. Faith in a big God is still my peace.

What now? The pandemic is still raging. I still have cancer. People are struggling. All people are struggling. I am still mostly sad but getting better. All of the kids were home for the holidays which brought me so much joy and watching them come and go and ‘do their thing’ helped me be grateful for where they are AND where I am in life. We can start there, gratitude.

I don’t do New Year’s Resolutions but for the past few years I have picked a word of the year. Last year I chose the word ‘simple’ and it was so helpful. It became a mantra and reminder for me to keep things simple and to really focus on simpler solutions. I had it on a bracelet, and I printed it on the opening page of my planner and journal. This year I have chosen 2 words and they’ve already been SO helpful. My first word is Kairos. There is linear, chronos or chronological time and then there’s Kairos, or my definition of those magical moments not necessarily confined within those minutes. Glennon Doyle has written, ‘Kairos is God’s time. It’s time outside of time. It’s metaphysical time. Kairos is those magical moments when time stands still.‘ Since cancer I have always sought after those magical moments and now more than ever, we need the magic.

My second word is ‘AND’. I chose this word because with most things in life, two things can be true at once. Life can be beautiful AND brutal (an amazing full life AND cancer). I can be both sad that my kids are gone AND happy that they’re becoming these healthy independent adults. We can be grieving lives we thought would be different AND still find joy and laughter. We can be disappointed AND still hopeful. We can be scared AND still be brave enough to take that next step forward. For me, focusing on this simple word has been so powerful. If we can remember that there is an ‘and’, it makes lots of things feel more ok…well at least it does for me.

Have you chosen a word? An intention? We have one life.

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Tears and Magic

25 Nov

I lost someone dear to me last week and I cried for almost a half an hour after I found out. Then I cried again today. When you are a cancer fighter, and if you’re like me who has battled cancer more than once, you become close to some if not all of your healthcare providers, especially if you see the same people year after year. Dr. Menaldi was one of those people. If you don’t know already, I was a long time singer when I got cancer the first time. I sang at local events, church, radio jingles, was on a tv show, and was involved in musical theater. After my first surgery for cancer, my right laryngeal nerve was cut which paralyzed my right vocal cord. Singing I thought, was done. My vocal rehab team consisted of Dr Rubin~ laryngologist, Dr Menaldi~speech pathologist, and Marie~vocal coach. Dr Menaldi worked tirelessly trying to help me find a new way of speaking and breathing with only one functioning cord. Eventually, she trained me to be able to sing again albeit not the same. She pushed me and motivated me and when one thing wasn’t working she researched and tried some of her own methods to get me and my voice back, or close to the way it was.

Dr, Rubin (l) and Dr, Menaldi (r)

Cancer came back twice after that first time, both times in my neck, both affecting my voice again so I worked with my voice team for several years. They had become my family, my go to, my shoulders to cry on every time the cancer came back but also the ones who stayed positive, encouraging, and who pushed me to keep working to get my voice back. Last Friday, Dr Menaldi died of cancer. I hadn’t spoken to her in awhile. Last summer we reconnected after I found out her cancer had come back but I didn’t get to say goodbye. Instead this past summer, knowing her cancer was bad, she encouraged me in my path and in my current cancer journey. I cried because it brought back my past fight, seeing her two sometimes 3 times a week for 4 years. I cried because I didn’t get to say goodbye or encourage her in her fight. I cried because it made me scared about my cancer. I cried because it was a reminder of how truly brief our lives are here on earth.

We are in a pandemic and the holiday season is among us. Yes it’s different and we are all grieving, but life is so fragile and there is so much to be thankful for. My daughter and I were talking about things we miss because of pandemic and she mentioned that she missed travel. Then she said she misses landing and seeing my face and how excited I looked when I saw her (she’s been on mission trips to Africa, Haiti, India, and studied abroad in Jordan). Toni Morrison said, ‘When a child walks in a room…do your eyes light up? That’s what they’re looking for.’ Clearly that’s what she remembers, but aren’t we all looking for that? I think when this pandemic is over we will all be looking at each other with no masks on and magic in our eyes knowing we got through.

Elie Wiesel, a holocaust survivor, lost everything and saw death all around him. After his horrendous ordeal he said, ‘When we have reasons to rejoice, we know how.’ Read that again. He knew how to rejoice and be grateful because he saw what he saw. After surviving he was grateful for EVERYTHING. This pandemic cannot even come close to being compared to what he went through but because of it, how much more grateful will you be when you can see your friends, when you can have a big party, when you can sit for a meal in a restaurant, when you can fully hug someone without anxiety, etc.. I have Stage 4 cancer. When I get caught up in the nonsense of life, I remember, I’m alive and my cancer is stable. My thing is time. When I get to spend time with loved ones I rejoice and I know how. Time is everything to me because I know how precious it is.

I’m not ashamed to say I watched the teen show ‘Dash and Lily’ on Netflix. Although it wasn’t exactly deep or brain stimulating, there was one line that stuck with me: ‘We see what we look for…magic.’ I always say there is magic in each moment and I believe it, but we won’t see it if we’re not intentionally looking. Always be looking because even now, there’s magic.

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Quarantine Check In

20 Apr

img_7553Starting week 6 of our quarantine but who’s counting and how is everyone? I have to say, I have run through the gamut of emotions. The first week or so I was just busy; busy preparing the house for all of the kids to be back (the older 3 are in college and 1 was studying abroad), getting groceries, preparing the home office to transition to 100% work from home for both me and my husband, etc. The second week was still busy but I felt a little more anxious and maybe depressed. Week 3 was when my anxiety peaked and I think it’s when I cried the most, not to mention I think it may have been the week when all the kids started really getting stir crazy. Remember, they are all older teens and young adults and are all used to their independence so being stuck with all their cars in the driveway is a little crazy. Yes, we have lots of cars in the driveway and street so it looks like we’re having a party…trust me, it’s no party in here.

Well here we STILL are, another week. I feel somewhat settled into a ‘pretend’ groove, but who am I kidding. Emotions still run the gamut, but now more frequently at all times of the day. I’m snacking all the time and I’ve ‘watched’ a lot of free workout videos but haven’t actually done many of them. I never know what day it is or even what time it is. I just know when the sun comes out and when we’re all hungry. The time of day seems like is gauged by meal then getting to the next meal. I’ve cut my hair (mainly my bangs and a couple ‘layers’ to frame my face), I attempted to color my hair with a brand that’s advertised mainly online (what a mess that was), and in the beginning of quarantine I ordered a stack of books I wanted to read but have not yet managed to read a single page. I do however, always carry a book around with me and set it down in proximity of where I decide to sit so that it stares and haunts me as I sit and snack.

My first born is graduating college this weekend. Did you hear me? He’s graduating college!! I obviously knew it was coming but now that it’s here, I’m a little sad. He has worked hard and is graduating from the Honors College at his university and will be meandajgoing to grad school to become a Doctor in Physical Therapy. Here’s the clincher, he was going to start grad school in the fall but recently got accepted to another school he’d rather go to which starts in May…MAY. They have redesigned their first semester to have it all online, then he moves for in person classes for the fall semester (hopefully). It’s a lot all at once. I’m not sad that he’s grown up and moving to another state far away for grad school, I’m grieving the fact that I have Stage 4 cancer and I want to soak in every single moment and my first born child graduating college is a ceremony I just wanted to see, cry, and soak in. Yes, it’s about me, but it’s about him too because I know how hard he has worked to do well and finish an undergrad science degree in the honors college in 4 years. Sigh. This Friday, the university president will have a Facebook live commencement event; thank you social media, he graduates via Facebook.

Cancer leads me to my last point. This quarantine has made people crazy and is causing some division (not just physically) between us. I have MANY friends that are small business and restaurant owners with brick and mortar properties, and they’re hurting. I have MANY friends who are healthcare providers who are giving their all, working hard, exhausted, scared, and staying away from their children just to save lives. They’re sacrificing everything to help others and they’re hurting too. I’m stuck in the middle because I’m an enneagram 9 and I want everyone to be happy and doing well, but I have cancer and it’s in my lungs. I’m an at risk patient so I’d like people to stay home and stay safe with their families no matter what. I’d love for people to not argue the politics of it all because the issue is about health, which many people take for granted until they don’t have it. I hear a lot of Covid bringing out the best in people but I’ve also seen (or heard) the worst. Last summer my youngest child had a stroke. It was awful and by the alextime he (and I) left the hospital, it was fall. We lost summer. Now with Covid, by the time it’s over, it will probably be summer, so we lost spring too. Here’s the deal, IT’S A BLIP IN TIME and with Stage 4 cancer, I love and LIVE for ALL blips in time and having time in general, by trying to be grateful always, and trying to always find the magic. I emphasize ‘trying’ because it can be really hard sometimes. This is just a blip in time to be a little less selfish and a little more self-less for people like me, or your parents/grandparents, or even for a complete stranger. ‘No one should seek their own good, but the good of others.’~1Cor 10:24

“Breathe in the amazing, hold on through the awful, relax and exhale during the ordinary. That’s just living a heart-breaking, soul healing, amazing, awful, ordinary life. And it’s BEAUTIFUL.’~LR Knost

 

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Cancer and Coronavirus

25 Mar

 

 

tljs3-10For the last couple of years I’ve lived with a steady undercurrent of uncertainty and occasional fear and sadness from a diagnosis of Stage 4 metastatic cancer. Daily, I have prayed for more time, less fear, maybe for my cancer to miraculously disappear or at the very least, remain stable for the next 50 years. Cancer has forced me to face mortality, the fragility of life, and the real possibility of death sooner rather than later. One author compared living with Stage 4 cancer to walking around with a bomb strapped to your chest not knowing when it may explode. Now add coronavirus.

I thought I was doing fine. Over two weeks ago things got a little weird. Coronavirus started to spread across the states but I wasn’t panicky. Having a science degree and being involved indirectly in healthcare helped me navigate the news and all the articles. Then the urgent conference call from work stating that we would begin working from home the next day. Two days after that, I got an urgent text from my daughter who was studying abroad and needed a flight out immediately because the airport in that country was closing in 3 days. Panic started creeping up and fear started choking me but mainly at this time, it was for my daughter. Flights were filling up as I was booking, prices were skyrocketing but I didn’t care. She got out on one of the last flights and all was well. Then the busy happened. Last week, all 5 ‘kids’ came home and while many with younger children were worried about school work and keeping young ones occupied, I was running what seemed like a bed and breakfast with 5 older teens/young adults ages 17-22; three of which were already living semi-independently away at college. I was busy in this new rhythm of work from home, my husband was on conference calls non stop with everything that needed to get done at his organization, then the scramble to get food, antibacterial lotion, and toilet paper, and to keep sane.

We are full on, in the middle of week 2 and Monday, I broke. I’ve been busy cooking, wiping things down, keeping up with my day job and the various conference calls and remote trainings during the day, and trying to take care of my lipstick business at night. I haven’t been able to focus on anything, life has become blurry.  I have cancer in my lungs which makes me one of those high risk patients, my parents who live less than 10 miles away are high risk, and my oldest son had asthma when he was younger and still has a few asthma attacks here and there, which makes him high risk as well. I still struggle with PTSD from my younger son having a stroke last summer, and for a few days I thought my daughter would end up stuck in her program abroad. I’m trying not to have fear, I really am, but it’s alot. My cancer has been stable for awhile which has afforded me lots of hope for more time, but with Covid looming in the air we breathe and the surfaces we touch including groceries we bring in our house, mortality is back in plain sight; it’s the perfect storm. The fear and uncertainty the world now feels was already familiar to me after my latest cancer diagnosis…now what? Which is more dangerous, the cancer or the virus?

What now? Focus and do the same things I’ve done through every adversity thrown my way. Breathe. I’ve been trying to take a few minutes throughout the day to close my eyes, stop my brain from running, and just breathe and observe. What is happening in the present? Can’t stop your mind? Focus on a chair in your room, or your dog, or a tree outside, or whatever is solid and real in that very moment. Pray. Pray for whatever’s on your heart; healing, your parents, your kids, your inner peace and sanity? Just pray. Be grateful for what you have right now. Be grateful that we can go outside and breathe in fresh air (with social distancing). Be grateful there’s no shortage on handsoap. Control what you can and let go of the rest. I cannot control my cancer or when those tumors decide to start growing but I can eat better and exercise. We cannot control this virus but we can do our part by staying home and washing our hands, how easy is that? In our immediate gratification society we have a chance to learn patience and when the day comes when we can all work and play again with others well damn, it’ll be that much more amazing.

On to the positives. Just about every type of workout is available on social media and they’re free. I’ve done yoga, barre, dance, pilates, all from the comfort of my own home. I’ve listened to Chris Martin and John Legend serenade from their homes and I’ve taken dance class from Debbie Allen (which was one of my dreams after seeing her in ‘Fame’). There is a lot out there and for the most part, people are willing to share their gifts and talents. That’s the last thing, give. No one is immune to coronavirus and people are isolated. Check on them, send cards, get on Facetime, do TikToks, whatever. Everyday is a gift and there’s no light without darkness.

When everything is moving and shifting, the only way to counteract chaos is stillness. When things feel extraordinary, strive for ordinary. When the surface is wavy, dive deeper for quieter waters.~Kristin Armstrong.

 

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Forgetting

3 Mar

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A crazy thing happened to me last week. For a split second or maybe more like two minutes, I forgot I had cancer. It wasn’t too much of a big deal but I was at a meeting and I just forgot and felt normal. Here’s what’s even stranger, I work for a company that kinda deals with cancer so I’m surrounded by it all the time but again, for a minute, I forgot. It made me laugh a little when it came back to me but I’ve been stable for awhile so maybe this is pretty normal.

I was with a good friend when she asked if hearing others’ cancer stories bothered me and no, absolutely not. I love hearing people’s stories and it actually helps to hear what others’ thought processes are so I know my thoughts are normal. I did however, tell her that sometimes what’s harder for me is when others forget that I still have cancer. Now, this is tricky because I’m really high-functioning so lots of people don’t know, and I also don’t want pity or any special treatment.Cancer is ALWAYS on my mind whether I show it or not.

  • Retirement~will I be alive for that?
  • My back hurts~is my cancer spreading?
  • It’s harder to breath today~humidity/allergies or is my cancer spreading?
  • Have dessert~is the sugar feeding my cancer?
  • I’ve lost a couple pounds~cancer?
  • Coronavirus~Yes, it’s awful and seems to be an epidemic. All of the news outlets say that the elderly, the very young, and the compromised are the ones really at risk since it attacks the respiratory system. I have cancer in my lungs so while people are thinking about the virus~am I one of those ‘high risk’ people that would do poorly?
  • Cancer, cancer, cancer…you get the gist

Cancer is the backdrop of my thoughts and is the steady undercurrent in my daily life. It drives many of my decisions and can sometimes control my mood. I get quiet, I get sad, I get tired easily, and because I’m an introvert, it’s easiest for me to withdraw. On the other hand, I am more observant, more joyful, and more grateful so it’s almost extreme. It’s a clash of intense joy and gratefulness along with sadness at the same time. I guess I’m asking for grace. Something I’m really working on is not judging other people’s pain. Someone may be struggling with work, a cold, a headache, a family issue, etc. and in my head I want to say, ‘but I have Stage 4 cancer.’ Everyone’s pain is their own and no one’s is bigger than another. Comparison is a killer in all aspects of life.

I listened to a podcast today and Richard Rohr said that sometimes his joy can make him sad at the same time. He went on to explain that in moments when he is overcome with joy and contentment, he is sometimes told he carries a sad disposition. He explained further that he realized that he gets sad that people aren’t experiencing the same joy and love of life; two intense emotions coexisting which he calls the ‘bright sadness’. In his ‘both/and’ worldview, opposites don’t contradict each other, they deepen one another. I’m sure I messed that up a bit but I get it and feel that as well; intense joy and gratitude coexisting with sadness. I get overwhelmed with living and being so grateful for everything and I just want to shake people and scream that life is amazing and that even in the mundane, you get to live. I get especially sad when it comes to my kids because of all the same things. All the little things they worry about, some of the choices they make, some of the entitlement they feel, or feelings of worthlessness while finding their passions and purpose, I want to shake them. More than that, I want to smother them with love, I want them to see the beauty of life and of people, I want them to know how amazing and worthy they are, and I also want to live until they’re older so I can see them with their own families. Sigh.

I forgot I had cancer for a moment. It was beautiful.

Prayer is sitting in silence until it silences us, choosing gratitude until we are grateful, and praising God until we ourselves are an act of praise~Richard Rohr

 

 

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