Tag Archives: cancer

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

 

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.

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!

 

Two Breaths

5 Jun

img_3582-1It’s been a rough week and it’s only Wednesday. My scan, which was scheduled for Monday had to be canceled because the insurance company wanted to review my case to decide whether I actually needed a scan or not. This was a bit of a jolt to the system because it takes quite a bit of mental preparation to even get to scan day. As a metastatic cancer fighter who has been getting scans every three months to determine if her tumors are growing, I rely on these scans (maybe too much) to determine how I will live the next 3 months until the next scan. ‘Rely’ may be too strong of a word but knowing if your cancer is progressing is a pretty big deal. I was able to reschedule for 2 days later (today) so I quickly got over the hump of anxiety and disappointment.

Yesterday morning I was in a minor, which could have been major, car accident while taking one of the kids to school. While turning into the school a woman ran through the red light and slammed into my car. When I heard the horn and looked, I quickly accelerated so she ended up only hitting my back wheel and all was fine. Then, later in the morning I got a call from the hospital telling me that my insurance denied coverage for my scan because they found it not medically necessary…WHAT???? It took me a minute to get over the first cancellation, this time, I lost it. Angry, frustrated, nervous, I called insurance and made her listen to my WHOLE cancer story and why the scan was necessary for my case. I also called my doctors office and asked that they call, but by then it was the end of the day. After my calls I broke down and cried out of frustration and maybe out of fear. Cancer is just as big a mental game as it is a physical one. Good news is, the doctor’s office did call insurance today and they were told that after further review, they changed their minds and approved my scan…now scheduled for Friday. Lesson: WE ARE OUR OWN ADVOCATES!

It is only Wednesday. Deep breath. Interspersed into these 2 major events we had a child graduate high school, moved another child back to her college town into a house, and had to turn in a leased car while finding another one…all of these things just since Sunday. Oh and of course there is always teen drama and what have you, pushed into the small bits of time that I’m just trying to find a little peace in. It is only Wednesday. How does one find peace and solace when there is barely enough time to breathe? How do I release the stress of having cancer while attempting to still handle real life and all the unexpected daily events from insurance companies, work, teens, ex-husbands, etc? ‘Anything you can’t control is teaching you to let go.’~J.Kiddard  Hmmm. Ann Voskamp recently wrote, ‘Waiting is a letting go to let something grow.’ I can’t control any of those unexpected daily events and I can’t control people, including my kids so I have to let go. I consider Ann Voskamp’s quote and I wonder about the word waiting. Waiting to me means time, cancer takes away time so I view all of that simultaneously; the waiting, the letting go, the living, the growing, it’s all mashed together. Inhale wait, exhale let go. Inhale life, exhale grow. Two breaths. Can it be that simple? I know I have God on my side and that knowledge is everything. In a podcast I listened to, John Green called God the painter while we (humans) were simply the frame. So yes, through adversity and daily challenges, I will remember my two breaths living life and trusting God the painter of masterpieces. Inhale wait, exhale let go. Inhale life, exhale grow.

Today I wear The Lipstick Journey lipstick in Serene which is a beautiful brown/coral shade. Sometimes I wear lipstick because it’s how I feel on the inside and other times I wear it because it’s how I want to feel. Serene is perfect for just this moment.

Unlucky

27 Apr

mountain

Unlucky. I recently had a medical issue pop up (unrelated to cancer) which led to a surprise surgery. Not to worry, it was an outpatient procedure, and after resting a few days I was feeling better. I was in my (now former) doctors office that morning when she said, ‘I scheduled you for surgery later today. This can happen, you’re just unlucky.’ Excuse me? My response, ‘You know I have cancer right? A surprise surgery is not great news.’ Doctor, ‘I know and that’s right, metastatic thyroid is rare too…seriously unlucky.’ Yes, I called the office after I left begging for a different doctor, anyone else in the multi-physician practice but yes, this is the woman, the only one available, who was to perform the surgery later that day.

In elementary school during gym class and sometimes at recess, there were those times when the teacher would pick a ‘captain’ to a team and those kids were tasked to pick people to be on their teams one by one. Considering I was a girl, shy, and one of the only minorities in a predominantly Caucasian school (after we moved to the suburbs from Detroit), I was generally picked last. I was actually a pretty good athlete unbeknownst to them. I don’t even know why I remember this but whatever team I was on would always lose. Even when whole classrooms would compete with each other on ‘Field Days’, my class would lose. Of course moving on to Jr High and Sr High running track, playing tennis, etc, this was not the case anymore, but in those formative years of my very young youth, I felt like I was the ‘omen’ to any team I was on. I honestly do not know why I felt like that but maybe it was because I was the outlier, the minority, the shy girl who barely talked, but every time whatever team I was on lost, it was no surprise to me.

Fast forward to the doctor calling me unlucky for this medical mishap and also my ‘rare’ cancer. It brought back memories and maybe the underlying shame that I’ve always carried of being the girl who brought bad luck to a team. None of it was fun and bad memories/feelings tend to stick. I have not always been on a losing team. In fact, I’ve been on winning teams most of my life whether it be in high school sports, competitions, pageants, or even my work teams. Looking at my life now, I found an amazing husband who loves and supports me in everything I do and everything I think about doing and who holds my hand at every scan and appt. I have amazing kids and great friends, a great career and now a lipstick company that helps people and has brought me new life despite having cancer. Strangely though, the ugly feelings of not being on a winning team still bubbled up at that doctors office, caught me by surprise and gave me that insecure feeling again. For a brief moment I questioned my ‘unlucky-ness’.

Meanwhile, the moment we get tired in the waiting, God’s Spirit is right alongside helping us along. If we don’t know how or what to pray, it doesn’t matter. He does our praying in and for us, making prayer out of our wordless sighs, our aching groans. He knows us far better than we know ourselves, knows our pregnant condition, and keeps us present before God. That’s why we can be so sure that every detail of our lives of love for God is worked into something good.’~Romans 8:26-28 The Message.

You can’t believe in luck if you have faith and if you truly trust God and His plan. I am a Christian and that’s how I believe but I’m also human so it’s ok to experience fear and doubt too. What’s not ok? Shame. Words from your past that have imprinted onto your heart and brain…blog for another day. Life is a series of alternating bad or uncomfortable things that teach us lessons in love, patience, overcoming fear, resilience, etc,; and good things that bring us love, peace, joy, and calm. Both lessons to either rely more on God and less on self, or to be grateful to God for our blessings. It’s called being alive. Our histories and past make us who we are today but don’t dictate our future or who we are ‘supposed’ to be. Lucky or unlucky? No such thing. Things happen, we move forward, staying grateful, and trusting God.

Today I wear The Lipstick Journey lipstick in Fierce. I’m feelin’ it. Cheers!

 

 

Strength and Story

23 Mar

facetune_23-03-2019-09-50-57

Yesterday I had the chance to tell my story for a podcast that will be broadcast in a few weeks. I have to admit I was nervous for a few reasons; I didn’t know what to expect, I didn’t receive any questions ahead of time to prepare answers for, and I’m a little insecure about my voice because it is weak and ‘breath-y’ and a podcast is all voice. When Lauryn first called to get ready to record I asked what part of my story she wanted to hear, the cancer part, the lipstick part, how the cancer opened up the lipstick business, etc. She said, ‘Your whole story, beginning to end, everything you want to tell me, just keep talking.’ Woah. That’s a lot. I started with, ‘ I was born…’ I’m sure that freaked her out a little but I quickly jumped to my passions growing up then to the first time I had cancer. I described everything from finding out, to the procedures, work, kids, people, emotions, home life, etc. I described those things for every single time I was diagnosed until now. I spoke about being a mother to young kids the first time I was diagnosed and what that meant, then now being a mom to older teens/young adults and what being diagnosed with Stage 4 means to me and to them. And of course, I spoke about lipstick and the part it has played in my messy journey.

I talked for over an hour without interruption describing every nuance. I realized that this was the first time, if ever, I have shared all of those details out loud. Not just all of the times I was diagnosed, the when, and what happened, but all the emotions and most of my thoughts surrounding those times. Yes my voice shook, yes we both cried at times, but there was also laughter. I was literally exhausted for the rest of the day. The thing is, I let myself be super vulnerable and was able to open up, and after hearing myself speak about all that I had gone through up to this point, I felt strong. I have always thought that throughout my journey I did what I had to do to just keep going for me and my family and that was not strength, it was just will, and just because. After the interview I felt REALLY strong and realized that ‘the story’ was not really the big moments, it was every piece, fragment, emotion, in between. It was the filler in the pages between chapters and that is where the strength was really necessary. ‘You gain strength, courage, and confidence by every experience in which you really look fear in the face. You are able to say to yourself, ‘I lived through this horror, I can take the next thing that comes along.’~Eleanor Roosevelt.

At the end of my hour of babbling on the podcast, Lauryn had one question, ‘After everything, has your belief or faith in God changed?’ Good question. I have to say after the first 3 times with cancer I never asked God why. I just figured God had a plan and was generally at peace with whatever outcome. Total trust. This last diagnosis of metastatic cancer I finally asked God the why question. Not, ‘why me’, but more ‘why can’t my life just be good for awhile. Why can’t I just rest?’ I don’t know the answers but I still have peace with whatever. I absolutely still believe in God and if anything my faith has gotten even stronger. I told her that in the darkest of moments for me and with all the unknown, God was/is my only solid and that’s enough. ‘Never be afraid to trust an unknown future to a known God.’ -Corrie ten Boom 

I started my day yesterday seeing this quote on Lauryn’s Instagram and it was perfect,’Tell the story of the mountain you climbed. Your words could become a page in someone else’s survival guide.’~Morgan Harper Nichols. Amen and amen.

Today I’m wearing The Lipstick Journey lipstick in Playful which is a bright plum/berry. It’s the brightest color I created and it’s actually not super bright (meaning still wearable every day, not neon). I chose Playful because it’s spring and I’m feeling funky. Cheers!

 

Scan Day

3 Mar

facetune_30-01-2019-09-22-07-1

Here it is again. Tomorrow is scan day for me. Living with ‘stable’ metastatic cancer is so weird. First let me explain stable; stable disease means that although my cancer has spread to other parts of my body (namely my lungs), the tumors are either not growing or not shrinking, there are no new tumors, and the cancer has not spread to any new regions of the body. Bottom line, with a diagnosis of Stage 4 metastatic cancer with tumors in my lungs? Stable is an awesome thing. I have been stable for over a year so at the one year mark my doctor decided to stretch my scans from every 3 months to every 6 months. Well, it’s been 6 months. In a blog I wrote over a year ago I quoted author Bruce Feiler who referred to his scans as his ‘regular date with digital destiny’ to show whether his lung nodules had grown. He goes on to say, ‘Scans are like revolving doors, emotional roulette wheels that spin us around a few days and spit us out the other side.’ Yes, yes, and all yes, I’m going on a date tomorrow with my digital destiny.

I have to say I think the spread to every 6 months has been beneficial to my well-being. It has given me enough time to recover from the scan, infuse a little hope, resume normal life, and on occasion, forget the cancer exists. The problem is, internally this weekend or even this whole past week leading up to the scan I’ve been a wreck. Of course nothing visible to the public but anxiety I can feel in my stomach, heart, and mind. This past week I haven’t slept that well and have had a harder time breathing. This weekend I’ve been pretty emotional. Giving my son a morning hug and a nice note from one of the sponsors of my launch party this morning has brought tears to my eyes. I want to both crawl into bed and not get up but also jump out of my skin and run like the wind (even though I can’t really run anymore because of my breathing).

I will make it through. Just another day and another step in this crazy beautiful life. Ultimately, having scans on a consistent basis has also served as a reminder that life is short and that it’s precious. It’s a reminder to stop and be truly grateful for everything and everyone you’ve been blessed with. I think that’s why I get so emotional, not because of fear, but because my date with the scan forces me to stop and really think about my life and all the people. Dang, I love living so much surrounded by people I love. Monday is just another day and by Tuesday or Wednesday, whenever I get the results and whatever  they may be, I will be a little stronger than today.

I love those who can smile in trouble, who can gather strength from distress, and grow brave by reflection.’~ Leonardo da Vinci

Today I wear The Lipstick Journey lipstick in Promise which is beautiful, soft, shimmery pink. On the website I described wearing this color to remind yourself that tomorrow is a new day, a color full of hope and promise and a ‘pinky promise’ to yourself to be gentle to you. For today (and tomorrow) I pray for peace. Cheers!

 

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