Tag Archives: Anna Warner-Mayes

Proud

21 Apr

A couple things really affected me over the last couple of weeks. A big one was Artemis II; the unbelievable images they captured, the joy and awe the astronauts had, all the things. Because we are so connected these days we were able to really follow almost their entire journey around the moon AND see the astronauts, share in their camaraderie, hear their thoughts and voices too. Upon their return they did numerous interviews and in one of them Christine Koch got emotional talking about the time she saw the earth hanging in the vast pure darkness—wow. That statement made me emotional because some fight over land, power, fame, money, and yet we are so small and we ALL are living on one single ball floating in darkness. It’s crazy and the pictures from the space perspective they captured were astounding.

Another statement that kinda blew my mind came from the winner of The Voice, Alexia Jayy. First off, she was phenomenal the whole season so I wasn’t entirely surprised that she won. Right after she was crowned this season’s winner she cried (of course), and the cameras followed her backstage where she called her mom. There was the usual ‘I can’t believe it! I won! I’ve worked so hard’ statements but at the end, she shook her head and in tears said, ‘I’m so proud of myself.’ That statement. How often do we say that to ourselves? How often do we wait for validation from a parent, coach, or a boss to tell us they’re proud? Those are all important to hear but why is it more rare to say it to ourselves? Maybe you do but I’ve never said it to me and it struck something inside of me that made me emotional but also left me feeling a little more empowered.

Last week I got to participate in my doctor’s World Voice Day Celebration Concert. I have joined this celebration almost every year since 2009 (after my 2nd cancer diagnosis) but for last week’s concert I was chosen to be the featured speaker sharing my cancer story, how it affected my voice, and of course, the power of our voice. Now, if you’ve read my last two posts you know I had the flu almost 3 months ago but after the fever broke I lost my voice COMPLETELY for almost 5 weeks, then it would come and go (still coughing, still weak today). This Voice Day and my being a part of it was touch and go up until my doctor introduced me. What most didn’t know is that last fall I had a weird reaction to my tetanus booster causing all of my lymph nodes in my armpits and around my breasts to become inflamed so a mammogram was recommended (I didn’t do it). Then after Christmas and 4 months of being on HRT for menopause something strange happened and they wanted to do a biopsy in the female parts (I never scheduled). Then the flu, then my voice, then of course the timing. Two weeks before Voice Day I had my mammogram and gyn appointment, the week before World Voice Day, I had my 6 months scans to see if the cancerous nodules in my neck and lungs have started to grow. I hadn’t realized until then that losing my voice for this extended time period was the tip of the health iceberg for me and my body was definitely keeping score. My mammogram and female issue turned out CLEAR and my 6 month scans were still STABLE—despite the stress on my body over the past months, the cancer did not grow (insert BIG sigh here). Sharing my story and singing a song loaded in history and so important to me was overwhelming. All of the anxiety and mistrust of my body culminated in the 8 minutes I was on the stage and I couldn’t help but get emotional afterwards. There were things I forgot to say in my speech and the performance wasn’t perfect, but my heart was exploding with gratitude that hopefully everyone got to feel and hear.

You can watch the full concert here; my speech and song start at around the 15 minute mark (15:00):https://www.youtube.com/watch?v=rDoChWthbaY

I’m so proud of myself. I’m so proud of myself. I’m so proud of myself.

We are tiny tiny people, living on a ball, floating in vast nothing, in darkness. What a miracle to be alive. Had things turned out differently for me in terms of the mammogram, scan, voice, etc, I’d like to think I would still be ok and be able to soak in the magical moments with gratitude and hope because I would still have friends and family that love me. Love=Hope and looking back at my life I know I would still say, I’m so proud of myself. You should try it too!

Today I wear Thrive Causemetics EmpowerGloss Ultra Glossy Lip Serum in Vanessa which is a bright cherry. I have loved Thrive as a company for a long time and have been using their mascara for maybe 10 years now, maybe more? I trust their products and love the causes they give back to. Anyhow, this lip serum/lipstick/lipgloss hybrid is FABULOUS; Highly moisturizing, doesn’t just sit on your lips, and more color than a gloss (don’t be afraid of the bright cherry description). I chose this color because it’s red but glossy and not as ‘punchy’ as all out lipstick; the message for me is ‘almost’ fierce but still confident and yes, damn proud. 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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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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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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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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Weary

16 Sep

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Alex (and I) left the hospital a little over a week ago and it’s been so good to be home. He’s been getting better at hyper speed and it’s been amazing to watch and honestly, pretty miraculous. He still has some work to do but his recovery has been phenomenal and I am beyond grateful. The Monday after we came home I had my appointment with my oncologist and just like that, I was back into my ongoing cancer journey.hospital

This past weekend Alex spent some time at his dads and it was the first time since the stroke that I wasn’t around him. It made me a little anxious to be away from him but gave me time to sit and digest everything that had happened over the past month and a half. I’m tired, but more than that, I’m exhausted and soul-weary; physically, mentally, and spiritually. Over the past 10 years I have fought and beat cancer 3 times and am now fighting for the 4th time, Stage 4 metastatic…then Alex has a stroke. That doesn’t even include divorce from a (still) difficult ex, remarriage, step-kids, new jobs, moving, sending kids off to college and all the daily obstacles ‘normal’ life brings. I. Am. Tired. I picked up a couple of my old journals, one from almost 20 years ago and one just 5 years ago and both were filled with so many struggles but all my entries ended with ‘thank you for…’ I have never asked God why I got/have cancer, I did ask why Alex had a stroke, and I have asked why life just can’t be easy for awhile because there always seems to be something, and that something has felt enormous (cancer, stroke). God didn’t promise easy. If you’re familiar with the Bible at all, NONE of those stories point to easy. But still…

‘The world breaks everyone, and afterward, some are strong at the broken places.’~
– Ernest Hemingway

When I was first diagnosed with cancer 10 years ago, there was a time when my prognosis was not great, and while I was praying one night I audibly heard God say ‘trust.’ Maybe it was in my head, but it was an interrupted thought and just the word ‘trust.’ Since then, that has been my mantra, trust Him. I am not questioning my faith because man, without faith in these trials I would be flailing. In fact, I believe I can still stand strong because I am trusting God to hold me up. I am not alone in this crazy thing called life. I do feel at this moment like my soul needs refreshment. It feels heavy, sometimes sad, and honestly it feels harder right now to find a thank you because I’m just tired; tired for my child, tired of fighting cancer. Matthew 11:28-30 ‘Come to me all who are weary and burdened, and I will give you rest.’ I am craving that rest, not just sleep, soul rest and refreshment. Psalm 71:14 ‘But I will hope continually and will praise you yet more and more.’ Small steps, Big God.

alex homeIt was a tough 6 weeks. What sustained me and gave me energy? Love. Love is a superpower; love beyond any words, love that took action. My fierce momma bear love gave me the energy I needed to take care of Alex and to be there fully for him. The crazy love I received from my home team: my husband, kids, parents, friends, Alex’s friends and teachers, the parents of Alex’s friends, etc, helped sustained my spirit and kept me secure that yes, the world at home and around me were also taken cared of. The love Alex and I felt from the nurses, staff, work friends, acquaintances, and even wishes from social media strangers was incredible. Love does make the world go round and life always moves forward. ‘It is good to love many things, for therein lies the true strength, and whosoever loves much performs much, and can accomplish much, and what is done in love is well done.’~Vincent Van Gogh

 

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Courage

28 Aug

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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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Scars

22 Jul

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This week I started physical therapy on my arm. Remember, it was the neuropathy and lack of sensation in my left arm that actually helped discover my Stage 4 diagnosis. Anyhow, over the past couple of years my left arm has gotten weaker and the prickly/burning feeling has been magnified. I did a nerve conduction test and found out that I have nerve damage to the nerves in my brachial plexus from external beam radiation and it could actually get a little worse over the years. Not fun. Physical therapy was prescribed to help rehab the nerves that are left and somehow strengthen the muscles around those nerves. One of the side effects from this nerve damage is called paresthetica, which is basically persistent itching from damaged and irritated nerves. My arm is always itchy, numb, and tingly, and I now have scratched it so much that I have several little scars running up and around my left arm. It ain’t pretty and honestly, going to physical therapy is a little depressing. It reminds me that I’m sick and because of that illness, I’m damaged. The weather lately has been brutal on my breathing too…all those reminders.img_3895

I have a few scars, one on my neck from the three cancer surgeries, one on my shin from banging my leg into a car door years ago, and now, several scars on my arm from my scratching my ‘prickly nerve damaged’ skin.  ‘Scars have the strange power to remind us that our past is real.’~ Cormac McCarthy. Every scar serves to remind us of the stories that put them there but also to remind us of what we’ve overcome. I look at the scar on my neck and remember the three surgeries that put it there and how far I’ve come. The scars on my arm remind me of the 7 weeks of radiation that killed my nerves but also killed the cancer for awhile.

What about the scars you don’t see? The ones left by hurt, words, anger, discouragement, do those heal? I think it takes a really long time. I am fully aware of how damaging words and actions can be. When scars heal they change the texture of your skin, but what about the damage of scars on your heart and soul? Hurt always alters something. ‘It has been said, ‘time heals all wounds.’ I don’t fully agree. The wounds remain underneath but the scar toughens the exterior. In time, the mind, protecting its sanity, covers them with scar tissue and the pain lessens. But it is never gone.’~Rose Kennedy. We are all damaged and scarred to some degree visible or not, and we should remember that when speaking to each other.

For now, I will keep going to physical therapy without getting mad at my body. I will look at all my scars and remember that I am strong.

Today I wear The Lipstick Journey lipstick in Fierce because that’s how I’m feeling 🙂

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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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