Tag Archives: cancer

Hello Again

23 Nov

I had to look back to see the last time I wrote a blog, and it was July, just after I got the results telling me that my cancer was still stable after 5 years; those dumb nodules on my lungs are not really growing or at least not growing very quickly. I’ll take it. Writing has always been a release for me and a way to process my feelings, but this year it’s been tough to write, and I think maybe it’s because I have too many feelings to process. Before, it was just having cancer 4 times, motherhood, divorce, a child with a life changing health event (which was already a lot), but then the pandemic started and kept going, and I became an empty nester and then menopause, all the things politics, shootings, and absolute craziness. I have relegated myself to 3 bullet points in a journal highlighting 3 specific things I am thankful for each given day and sometimes that’s even hard. I recently read a book by Susan Cain called Bittersweet and boy did that speak to me. It’s a book about people with a more melancholic personality, ‘a tendency to states of longing, poignancy, and sorrow; an acute awareness of passing time; and a curiously piercing joy at the beauty of the world.’…Bitter and sweet are forever paired. Remember my word for this year was ‘AND’ because life was beautiful AND brutal, light AND dark? This book was validating and so me.

What does it look like as a Stage 4 cancer fighter on her 4th recurrence in 14 years to have an acute awareness of passing time? Pretty shitty, and yet…And yet there is so much beauty. And yet there is so much love from friends and family members and sometimes even strangers. And yet the time we do get to spend with family and those closest to us seem even sweeter, so although we don’t necessarily like ‘just be grateful and move on’, we can be grateful for another breath to keep moving forward. Moving on is different than moving forward. It also helps to seek out those things of beauty and be purposeful when it comes to finding joy.

I miss my kids. Being an empty nester is bittersweet to me, it’s great until it’s not. I’m happy they are all thriving and growing to be amazing adults, but there are days when the ache in my heart to see them, hug them and be around them is so overwhelming I can’t catch my breath. It doesn’t help that seeing them requires at least a 3-hour airplane ride and 2 of them are currently in two different time zones. And yet, they are thriving. And then, I remember my mom having to let go of me and my brother as we grew up and moved away; and her mother saying goodbye to her as she and my dad moved to the US, a different country; those who’ve had to send their kids off to war, and of course those who’ve lost a child, so many goodbyes and yet…

Tomorrow will be my first Thanksgiving EVER not having at least one of my kids here and not gonna lie, I’m pretty sad (although I got to see and spend time with my oldest last weekend). It’s the ‘take my breath away if I think too much about it’ sad but it’s just a day and I’ll see them soon. Also, that acute awareness of time plus having cancer is not cool. So tomorrow I may still cry, but it will be that perfect mix of sadness they’re not here and gratitude for life and living.

I’ve had lots of conversations about faith over the past few months and it’s been quite the journey. Here’s what I know, because of the pandemic, all the things happening in the world (including our own backyard), all the divisiveness, cancel culture, etc., people are asking questions. People are searching for truth but not pat phrases, bible verse responses, religious lingo, Christian-ese, etc…Truth in ACTION. Love in ACTION. Kindness in ACTION. Is that a tall order? I hope not. I will never abandon my faith, but I will continue to question rules that are manmade, those whose actions don’t match the love they speak about, and words and stories taken out of context to ‘win’ something when there are no winners and losers, just people trying to feel like they matter and that are loved. How do we love like Jesus? I’ll stick with that.

Thanks for reading. Happy Thanksgiving!

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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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Life Is A River (and yes I know that’s a lake behind me)

5 Apr

We just moved. It’s been a lot and I didn’t think it would be, but so many changes have happened over the 2+ years of pandemic. I can’t seem to push past some of the sad days but there have been so many good ones. Warning, this may be a super rambling blog, so sorry not sorry. I’ve had lots of thoughts swirling in my mind so I’m writing to actually clear it up and put it out there. First, it’s Lent. Last year I did some amazing Lenten devotionals (from Kate Bowler and Erin Moon), and they were so helpful in quieting my mind and keeping my heart in focus of the season. I grew up Catholic and was ‘taught’ to give something up during Lent; a fast to remind you of the 40 days Jesus spent in the desert leading up to His death.’ Last year, I decided to partake in this ritual of fasting and give something up. This year, as I was prepping for lent, I downloaded and joined a few Lenten devotionals from people I love following, Kate, Erin, Sarah Bessey and had full intention of following and partaking in a sort of fast again. DID NOT HAPPEN. I read a beautiful article right before Lent (thanks Erin) that really resonated with me. The author spoke about her difficulty finding something to ‘give up’ this year and she asked, ‘over the last 2+ years of pandemic, haven’t we given up so much already?’ We’ve given up the false security that we are invincible (maybe that’s a good thing). We lost time with friends and loved ones, and many people even lost loved one and weren’t able to have a proper goodbye. We’ve lost jobs and safety, trust and confidence and to some extent, joy and maybe a little sanity. It seemed irrelevant to give up social media, chocolate, or whatever, when we’ve gone a strong 2 years giving up one thing after another. However, it is Lent, and I love Jesus. In Barbara Brown Taylor’s book An Altar in the World, she talks about altars everywhere we go and in everything we do, so to live with purpose, slow down, pay attention; to be in constant prayer, not just ‘making time’ in your day to sit, read, and pray. What does that look like for me? Waking up and walking to the coffee maker in the silent, dark of morning and praying, being aware of the sun and rain and grass and flowers of spring, and praying, being in conversation with a friend or a child and praying for them while in conversation. Lent for me this year has been living in prayer and remembering God is always there (and also, on occasion reading one of those devotionals).

Second topic, we moved. I don’t usually get attached to homes or physical objects and I’ve never been emotional over a sale of a house, even my childhood home. I have always loved the idea of a different place, reinvention, scaling back, etc, but this one hit me hard. It didn’t happen right away. In fact, I was excited to downsize, save money, and move onward as empty nesters. Most of the kids had taken much of their things to their college/grad school apartments, in fact, AJ, the oldest literally only had his winter boots and coat left at the house. Then came the youngest, Alex’s room. His room was the same as when he left for college. The posters were up, the desk still had pens on top and notecards in the drawers, his closet had clothes, shoes, and a couple backpacks in their regular stack; it felt like another day and that he would just walk in after school and plop onto his bed. Then, still in the plastic hospital bag from when we left the hospital after his stroke in 2019, were the hundreds of notes and letters from his friends and well-wishers; reminders of that dark time that transitioned into a time of strength and healing. Packing up his room was the first ‘break of the dam.’ So many struggles, so many memories.

The piano. As discussions were had about what we would move or not move walking around the house, the piano came up. At first it was a non-negotiable even though, as Jim reminded me, I haven’t touched it in a long time. It was coming with us, and we would find a space. I have not been without a piano since I was 7 years old and maybe it had become a source of comfort and my link to my musical past. When Alex was in elementary, he even wrote a short assignment for school and talked about how my playing and singing would bring him joy and comfort so yes, it was coming. The weekend before the move Jim headed up north to bring some tools to the cottage and I sat at the piano to try to play. Cancer took my singing voice, but I had the piano. Over the years after all the surgeries and radiation, I’ve developed neuropathy in my left hand and arm to the point that I can’t really feel my fingertips. Sometimes it’s manageable and at times, it’s not. As I sat at the piano and tried to play that particular day, my fingers would not cooperate and actually sent more numbness and a little pain up my arm. This was the second ‘breaking of the dam’. I was heartbroken, hated cancer, and was now willing to NOT move the piano. It was Jim who said, ‘don’t give up on it yet’, so the piano moved and sits in a small corner of our even smaller home.

We gave up the keys to our house less than a week ago and over the weekend I flew to see Alex in Arizona for his mom’s weekend. I’m so grateful I got to spend time with him, and I decided, with the kids gone and mostly farther away, when they ask, I want to be there. The move was hard not because I loved the house or the ‘things’ inside of it, but because of all the memories. It was a house of safety, love, joy, and new beginnings for me; a place where I could mostly be myself and breathe. No, it was not all roses. We raised 5 teens in a blended family, Alex had his stroke, I got my fourth cancer diagnosis and Stage 4 on top of that: so many challenges but also so much love and support.

As far as the empty nest thing, what’s made it so hard for me is time and cancer. My same story. What actually helped me came from the show ‘This Is Us’ (spoiler ahead if you haven’t caught up to the current season). In a recent episode, Rebecca (the mom) who has early onset Alzheimer’s sits her adult kids down at a table and gives them a speech. I’m paraphrasing but basically she says, ‘Don’t let my illness make your world smaller. Take risks and live your dreams.’ It was a HUGE mindshift for me and I come back to that phrase when I get sad missing my kids. I will confess that I’ve used the phrase ‘don’t be mean to me, I have cancer and you don’t want that to be your last phrase/feeling/sentiment to me.’ Awful I know but sometimes I just want to hold them so tight. But, I too don’t want their worlds to become smaller because of me so here I am. This morning I did a meditation from Sarah Blondin and she talked about the constant tension of life between resistance and letting go. She said,’ Why hold on to the stones at the bottom of the river when you just want to be the water that flows freely?’ I want my kids to think of me and smile, feel loved, seen, and safe because they feel free and not burdened by my own expectations, sadness, disappointments, or my own pain. Heck, I want to be free of that too. How? Remembering that tension will always be there and that life is never perfect but is always beautiful. Thank you Jesus.

I feel better, not sure if you do. When is life not changing? Just like a river, it’s not always flowing peacefully, sometimes there’s rapids. Life is full of OMGs and WTFs but also full of love, joy, and moments of peace. I am so grateful I get to feel the gamut of emotions because that is living and that is growing and that is what it means to just be present. I am grateful for all of it.

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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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Empty Nest (yes I’m crying)

18 Aug

By the end of this week I will be an empty nester. Who came up with that name? I don’t think I like it. Plus, if it’s being compared to a birds nest, that implies they never come back. Am I wrong? Also, don’t mama birds shove their babies off and force them to fly when they’re ready? Ok. There were/are definitely times I’d love to shove the kids into the world and force them to fly but there are times I equally if not more, want to hold on and squeeze them in a hug and force them to just stay near. ‘The greatest gifts you can give your children are the roots of responsibility and the wings of independence.’~ Denis Waitley. Yes, yes, sure. I am not afraid of being an empty nester, it’s actually exciting to think the house will be more quiet, the tv/kitchen/couch will be just ours, our grocery bill will be significantly less (and I won’t have to think too hard about pleasing everyone for dinner), we can be more spontaneous, whimsical, and maybe even walk around in our underwear in our middle aged bodies.

I have been swallowed up in mixed feelings since Alex’s graduation last June, knowing he chose a college 2000 miles away and that this day would be coming sooner than later. I want to say that Alex is my hardest goodbye but I can barely remember launching the others so I know I’ll be ok. Alex is the baby and that in and of itself makes it harder. I was first diagnosed with cancer just as Alex started kindergarten and am now in my 4th recurrence. I was diagnosed as Stage 4 cancer when Alex was about to start his freshman year and I remember praying to just be alive to see him graduate high school. He has pretty much only known his mom as a mom with cancer. I’m still here, cancer has been stable since then but life was not easy within that 4 year period. Two years ago this month, Alex had a stroke and was right side paralyzed. In fact, almost everyday this month a memory has popped up on FB or in my google photos and it is of Alex at the hospital. This was the week, 2 short years ago, that he started moving his right arm and right leg again. Pictures have come up from the prayer vigil at his high school, of friends sending me encouraging videos, and of the night his friends gathered outside the hospital with flashlights and banners for him to see from the windows from his hospital floor. I lived at the hospital for 6 weeks and it wasn’t for me, it was for the child who is now ‘flying away’ and who had to fight hard both physically and mentally. Every memory and picture brings a flood of emotion. This is a hard goodbye.

A few nights ago we took a packing break and he laid down facing me on his bed and said, ‘let’s just talk.’ As I lay there facing him, I burst into tears. At the hospital, I would be in the exact position, staring into his eyes and praying at first for him to survive, then that he would just get better. I bargained with God to take me instead, after all, I was the one with cancer; the one who should be in the hospital bed. I remember the very last night at the hospital, looking at each other and both weeping about all that had happened, and expressing fear over his future and what leaving the safety of the hospital meant. I could not hold back the tears being in the exact same position looking in his eyes, I guess I have PTSD. All he said was, ‘Don’t let my last moments home be sad, be happy for me.’ I am ecstatic for him…for real!

As I try to process the last one leaving the house, I know that it’s not the fact that we are becoming empty-nesters, it’s the fear of an unknown future for both of us because of our health ‘scares’. I am also filled with questions about whether I was a good mom or not, did I help guide them on the right path, will they be ok and if they’re not, are they strong enough to ask and seek help, so many questions but I know I did my best. It seems the most random things melt me into a puddle of tears like the face to face talk, bringing something to his room and realizing he won’t be in it anymore for a long while (and then less and less), seeing the bag of almost 200 notes and letters he got at the hospital, the stupid picture memories that keep popping up on my phone, and even the random food items that only he likes that are still in our pantry and fridge. I know that as time passes these feelings will soften, he’s not the first kid to leave. It’s just another reminder that time goes so fast and to make each moment count. ‘Making the decision to have a child is momentous. It is to decide forever to have your heart walking around outside your body’.~Elizabeth Stone.

I learned after the first one graduated high school and left that raising kids is a long series of goodbyes and as they learn to ‘adult’, we learn to let go. Now I prepare myself once again to have my house as a place he visits instead of a place he lives and to leave another piece of my heart someplace else.

‘If you would have your child to walk honorable through the world, you must not attempt to clear the stones from his path, but teach him to walk firmly over them-not to insist on leading him by the hand but let him learn to go alone.’~Anne Bronte

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Caregivers

9 Feb

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I found out a little over a week ago that one of my caregivers has cancer. She was diagnosed a few years ago and it has returned with a vengeance. I met her when I first got cancer in 2008 and she was integral in my healing process both physically (helping me regain my voice) and mentally because she is one strong woman. She pushed me hard to help my healing and I am so grateful. A few days ago I found out another strong woman who has cared for me and my kids was just diagnosed with cancer as well. The news made me sad because you just never think the people who have made it their job to care for you and others would ever get sick themselves. Cancer is a bitch (excuse my language but it just sucks).

Over the past 11 years with cancer I have been a patient at a few different institutions and have had img_6957amazing doctors, nurses, and support staff. About 4 years ago one of my original doctors that helped navigate my cancer journey retired and I cried my eyes out.  He was the one who called me with the news that my cancer had returned the 2nd and 3rd time. He researched new therapies and called different surgeons and oncologists; this busy doctor made me feel like I was his only patient for the 6 years that I saw him. I love all of the people that cared/care for me. What a difficult job they have trying to comfort and encourage patients, while also doing their jobs and what’s medically necessary. The impact that caregivers have on our lives is pretty astounding. Having cancer comes with baggage; fear, sadness, uncertainty~ it’s a dark time and medical staff play an important part. No matter what is happening in their lives they are tasked to care and love hard. Dr. M and Dr. D, my prayers are with you and I love you both hard.

February also marks 6 months since Alex had the stroke. He is doing remarkably well! After having full right side paralysis, he’s now walking, driving, and back in school facetune_05-12-2019-17-31-34part time getting all A’s. He still gets a little tired writing but that is coming along. Here’s my mom struggle…before the stroke he was a normal teen boy doing the push and pull; the pushing of my nerves while trying to pull away into his own adulthood. I get it, I’ve had to let go of my other two and that’s how it goes. After the stroke, he became my baby again. It was an incredibly difficult time and sometimes when I close my eyes I can still see him lying in that bed in the ICU and it makes me cry. There are things I can’t even talk about without choking up including the last night we spent at the hospital together, praying, crying, and talking about all that had transpired, before img_6960being discharged to come home. Now that he’s about 95% back to being a normal teen boy, there’s that push and pull again, and I have to relearn it. As one radio DJ said, it’s like a hard break up. For me it’s like breaking up, getting back together, then going through an even harder break up again. Makes me sad but I know it’s necessary. Motherhood is hard and time flies. Besides Alex, my oldest is graduating college in a few months and planning grad school farther away, and Audrey is studying overseas this whole semester. It’s a mixed bag of sadness and joy.

I was a guest on another podcast last week and the topic was hope. She asked my definition of hope which I responded that it’s knowing your mission here on earth is not yet finished. It’s looking forward to another day with the expectation of something good despite your circumstances. Hope is the active response to gratefulness, recognizing the beauty of what, and who surrounds you.  The month of January my lipstick company, The Lipstick Journey, did a ‘buy one/give one’ to a cancer thriver and it was amazing. I got stories and emails and pictures of people across the country. I got to write notes of encouragement with every lipstick I sent. This is the mission that gives me hope and the motivation to keep my lipstick company alive. What else gives me hope? My faith in God knowing He’s ultimately in control, and people. Despite what we see on the news, the ugliness of politics, and people still judging others, there are kind people all around that want change and want to be helpful. I’ve seen it and felt it. When you’re sick or in need, people rise up. That’s hope. We are all caregivers. Be kind and love hard.

‘Hope is like the sun, which, as we journey toward, casts the shadow of our burden behind us’~S Smiles

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Tears Through Sadness and Joy

17 Dec

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This year has been a year filled with so many tears from both despair and profound gratitude. One of the aftereffects of having cancer is that your eyes and heart are so wide open, you feel and love more deeply because you’re much more aware of time, people, and life in general. Well dang, what a year it has been; still dealing with cancer, an unexpected emergency surgery, Alex’s stroke, launching a new lipstick company, job changes…so much.

A little over a week ago Alex had img_4634what will hopefully be his last procedure having to do with his stroke last summer. Afterward, while Alex was in the recovery room, the doctor came in and told us that all of the vessels in his brain looked normal and that he shouldn’t have another stroke due to AVM in his future. Done. A few hours after leaving the hospital I was alone in my car headed to the grocery store and I started to cry which then turned into weeping. I couldn’t stop. I realized that since Alex’s stroke in August, I was remaining strong and focused on him and his recovery, trying to keep his and my own spirits up, and now, I was letting it all go. All I felt was an overwhelming sense of gratitude. August and September were a blur of worry, grief, and tears and now, these were tears of joy, gratefulness, and relief.

Yesterday I had my 6 month CT scan because yes, I still have cancer. Typically for about 2 weeks before my scans I suffer from scanxiety; that anxious, fearful feeling from getting a scan that may say your cancer has advanced. I’ve even on occasion had a mini panic attack while being rolled into the machine. With my focus on Alex and his health over the past few months I haven’t had the time or energy to img_6120focus on my own stuff, which was kind of a blessing. Here’s the lesson in that, when you focus on others you focus less on yourself, it’s a good thing most of the time. I honestly didn’t even think about my scan until the night before. I got the results today and I’M STILL STABLE!! My cancer is still there but slow growing and as my doctor said in his text, ‘nothing to worry about.’ Tears, actually, lots of tears.

‘Pain and suffering eventually come to us all. At some point, we will all find ourselves in places of darkness that will seemingly overwhelm, even destroy us…Every journey into darkness, whilst terrifying, has unexpected treasures hidden in it.’~David Gotts

2019 is coming to a close, and after my scan and stable results today I feel like I am finally exhaling. A new decade is coming, 2020…a new DECADE! Through it all, what were the unexpected treasures? What were the diamonds that shone through the darkness? I cry thinking about it because there were so many points of light that I realize it was never really dark. Christmas is coming and one of the things I am most grateful for is my faith and knowing that I don’t ever have to carry anything alone. Through the tears, thank you, thank you, thank you. Thank you for following my lipstick journey. Merry Christmas, Happy Holidays, Cheers!img_5696

 

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Courage

28 Aug

alex

This has been one of the toughest weeks in the hospital with my son. As you know from my last blog, my 16 year old suffered a stroke on August 2nd. Since then he went from the ICU to a step down unit, to in patient rehab. He has made TONS of progress in terms of speech and his right side gaining movement, but all of this progress was leading up to 2 procedures to ‘fix’ the AVM in his brain; one to stop the blood flow in that area, followed by brain surgery to fix the actual malformation. What went from deepest sorrow, to joy from getting better, returned to grief and fear this past week for these next two steps. Everyday since last Friday, grief, fear, and joy lived simultaneously in his hospital room. During the day we would experience the joy of something gaining motion but at night, the fear of the upcoming procedures and what changes may happen would steal the joy. Then there were the questions amidst tears in the quiet before bed each night; Why did this happen to me? Why can’t I just be a normal teen? Why me? I didn’t know this momma’s heart could break even more, but watching your child in pain and struggling with these unanswerable questions broke the remainder of what I had left.

How do you answer these questions when you don’t have the answers? How do you remain courageous when you yourself have fear? All I could do was hug him, cry with him and tell him that it was ok to cry, be afraid, and ask questions but in the morning he needed to fight back and to push forward. I told him to ask God to strengthen and sustain him and to give him peace. For a kid (and even for an adult), that sounds so generic and blasé’, but it’s what I have to hang on to so I’m going to hang on to it. I also told him when he’s older, he can tell his kids and grandkids about the scar on his head and how he overcame the biggest challenge of his life when he was just a kid. Ann Voskamp speaks of grief and loss as a type of empty or negative space in our hearts which gives our lives definition; its constant presence in our thoughts and actions. She then says that God uses this space to give us permission to pause, help us reevaluate and draw our attention to what is positive-God Himself and the hope we have.

I am exhausted, mentally and physically. On top of this, we had 3 kids recently go off to college and another is starting her senior year of high school. Life moves forward. I thought that a Stage 4 diagnosis would do me in, but watching and caring for your child through such a major health crisis goes beyond human capability. I understand the being strong and fighting part when it comes to me and my fight, but for my child? It’s the next level. Children believe you when they see in your eyes that you believe, and it has taken every inch of my being, with HEAVY reliance on my faith to be strong and courageous for both of us. Love gives courage. We talk about life in seasons, ‘this is just a good or bad season,’ etc, but I heard Shauna Niequist on a podcast and she referred to life as more of a railroad track, the good and bad happen simultaneously side by side. I agree because I’ve seen it every day we’ve been here and even through my own cancer journey. In this hell, there has been light. On the worst of days, there have been glimmers of hope. There may have been tears but there has been laughter as well; always good and bad side by side.

The love we have experienced from friends, family, nurses, even strangers have meant so much and has lifted us up. I cannot thank you all enough for all the cards, texts, gifts, and prayers. As a Christian, I have always known the story of God and Jesus but now I understand even more the incredible sacrifice; a Father watching his son suffer real human suffering to give us all hope. That is love. Love gives courage.

‘Do not fear for I am with you; do not anxiously look about you, for I am your God. I will strengthen you…I will uphold you.’~Isaiah 41:10

 

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Is God Still Good

16 Aug

img_4179About a month ago I was scrolling through social media and one of the cancer survivor/fighters I follow had her first scan one year after being told she was cancer free, and it was still clean. This of course is reason to celebrate and her comment was ‘God is so good.’ I hate to say it, but in my mind I thought, What if the scan results did not turn out that way…would she have still said, ‘God is so good’?

I have had a beyond crazy couple of weeks. About 2 weeks ago I was part of a celebration called Brushes With img_4060Cancer. I was matched with an artist (singer) and we collaborated together to create a piece of music with spoken word. There were several other artist/cancer thriver collaborations and the night was beautiful. At the end of the night I was presented a painting from an artist who told me he was inspired by my story and the painting he had been working on that evening was meant for me. Cue the tears of joy, gratitude, awe, etc. I left on a high. God is good. The very next day my 16 year old son suffered a stroke. The very. next. day.

Two weeks ago today, my son suffered a stroke due to AVM, an undetected malformation in the brain from birth. The tears of joy the night before turned into tears of the greatest sorrow and desperation I have ever had. I have never felt such depths of grief until I saw my baby, right side paralyzed, unable to speak that first week, with so much fear in his eyes. Was God still good? I obviously have had my fair share of bad stuff, but that first week (last week) felt like I was in an alternate reality. The words, ‘God only gives you what you can handle,’ meant (means) nothing to me because this, I couldn’t handle. Then there’s, ‘Things happen for a reason,’…what reason? Why do I have Stage 4 cancer and why would my youngest have a stroke? Here’s what I think (and excuse my language), shit happens. It just does. We were not promised heaven on earth or some euphoric life. I live in Michigan, we have long, gray winters, Michigan is not heaven. This is real life.

When Jesus was on earth, He experienced real life too. God doesn’t give us what we can handle, what kind of God would punish us to see what we could handle? I have felt completely helpless in this situation and I can’t handle this on my own, so on the contrary, I believe God helps us handle what we’re given. Ann Voskamp writes, ‘The Writer of the story has written Himself into the hardest places of yours and is softening the edges of everything with redeeming grace.’ I like that, He is softening the edges of this nightmare.

God is still good. In the case of a Christian life instead of ‘seeing is believing’, we have to live by ‘believing is seeing’. Romans 8:25 says, ‘But if we hope for what we do not see, we wait for it with patience.’ This situation sucks. Me having cancer sucks. I know for sure though, that believing in God offers me the hope I need to push forward. This hope is the release needed to say, ‘I have no control over the situation and I hand it to You.’ Erwin McManus says, ‘Our ability to endure, persevere, to overcome is fueled by this one seemingly innocuous ingredient called hope.’  So, having metastatic cancer but still stable after 2 years? God is good. Alex progressing and getting better slowly every day? God is good. The hundreds if not thousands of people who have prayed for us over the past couple of weeks? God is good. Jesus living on this earth and suffering real, human, pain to give us hope? God is good. We will all have some adversity and some, even major tragedies which will be 100% awful and make us question everything. For me, the bits of peace and even the smallest rays of hope come from my faith in a big God, no matter the outcome. I am not alone. Small steps, big God. God is good.

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New Normal

23 Jun

scan day

My three month scan came and went and my lung nodules are still stable! Because of all the insurance craziness leading up to the scan, I wasn’t in a rush to get the results. My cancer has officially been stable for 2 years (next month) so now my scans move to every 6 months. It’s good and it’s bad. Every 3 months was hard but it felt comforting to keep tabs on those tumors, moving to every 6 months? Eh, I’ll try not to panic in between wondering if they’re growing.

I visit cancer centers for my job on a daily basis, ironic huh? Most of the people I speak to don’t even know I have cancer but I’m good with that. This past week I was speaking to a social worker about her role in a patient’s cancer journey and I ended up sharing with her that I myself have Stage 4 cancer. I could see her eyes and demeanor change as she shifted into ‘social worker’ gear. I told her that after this last scan I have felt more at ease knowing that my tumors have had little to no growth over the last two years; ‘still stable’ gave me a boost of hope. I told her that I was now trying to view my cancer as more of a chronic disease. This is my new normal, navigating a ‘normal-ish’ life knowing I have cancer. Yes, it’s weird.

On a podcast this week a cancer survivor said that while going through treatment, people would call her ‘warrior’ and ‘strong’ but she was just doing what she needed to do to survive. She said that integrating back into real life AFTER the tests and treatments was actually more difficult because there was no handbook, no one scheduling a test or bloodwork; she faced mortality and life became more ‘simple’. Simple meaning being grateful, loving others, being kind, appreciating time minus all the b.s. and drama and complaining and stressors that don’t really matter in the end. This is my mind daily, integrating into everyone’s normal daily life but having a more simple mindset because with metastatic cancer nothing is ‘normal’ living anymore. I can’t forget I have several cancerous nodules in my lungs and I can’t pretend that I don’t think they’re ever going to grow. How do I navigate normal and not really normal on a daily? Advice appreciated but I’ll start with grateful. Most of the time I view life as simple like the podcast chick, on occasion I get swept up in the drama but then I remember that life is fleeting.

How long is a long life? In a few months I’ll be turning 50, FIFTY!! I’ve technically lived a long life already. How do I want to live the rest? Warrior strong and not tinged with sadness and cynicism that having cancer can sometimes bring. Simple. Intentional. Grateful.

Today I wear Bare Minerals Gen Nude lipstick in XOX (which is a dusty rose) with The Lipstick Journey lipstick in Promise on top. The lipstick I created has enough pigment to wear alone but the texture is also perfect to layer on top of something you may already have to ‘adjust’ the tones. Putting Promise on top of this lipstick just lifts it up a notch and adds a tiny but of shimmer. Cheers!

 

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