Tag Archives: stage 4

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

 

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!

 

 

Stable

13 Mar

facetune_13-03-2019-22-37-54

I am stable. I love the word stable. The definition of stable in the dictionary says ‘firmly fixed, not deteriorating, sane, sensible.’ I’ll take it. As a metastatic cancer fighter stable is the best possible word whether you’re on treatment or not, stable is the goal. Stable means I am not deteriorating. So here I am with the best news and not on any type of treatment yet. Awesome. I got the news via text from my doctor. [Note, YOU ARE YOUR OWN ADVOCATE. Find a doctor that fights WITH you and cares enough to tell you news you want, no, NEED to hear right away.] Anyhow, I get to soak in more life for awhile and I’m good with that.

Last week was a whirlwind of a week. Had my scan on Monday, got my news on Tuesday, then flew out for work Wednesday. I honestly did not have time to process news I had been waiting for for 6 months. After working Wednesday with my co-worker, I found myself sitting at a bar in a nice restaurant eating by myself. I ordered an appetizer, had a delicious dinner, and ordered the best wine. I pretty much ordered whatever the waitress recommended. At the end of the meal she asked about dessert and I said ‘no way.’ She looked at me and said, ‘Get the dessert, don’t you have anything to celebrate?’ That was it. I burst into tears. I realized that through the busy-ness of life and having to travel for work, I had not processed the news of being stable. IT IS SUCH A BIG DEAL!! She ended up crying with me then not charging me for this extravagant meal (there are fantastic human beings out there), which made me cry even harder. I left the restaurant and drove to my hotel still a blubbering mess.

After my work trip I was asked to share my story at an International Women’s Day celebration back in Detroit(it was a full week). I have to say I was SUPER nervous. I’m not sure what I even said but I do know I was able to touch on the major parts of my story…like my four trips with cancer and starting the lipstick company out of my need to have purpose and meaning from having cancer. What I realized afterward is that the ‘story’ really happens in all of the in-between times; in between those big events of diagnosis, surgery, and treatment. The stories are the waitress and the free meal, the moms on my sons basketball team making a shirt to support my cancer journey and surprising me with it by having all the boys wear it at a game, the tears I cry thinking about the kids and their future that I may not be part of…there are so many moments in a day that make up our stories and 15 minutes couldn’t touch the surface of those. ‘Life isn’t a matter of milestones, but of moments.’~Rose Kennedy  Never forget to notice the moments and soak them in.

I saw my doctor on Monday, one week after my scan. It was a generally good visit. He was smiling when he said, ‘All looks good! Still stable, no new tumors. Any questions?’ We chatted for awhile, he looked at my bloodwork, then looked at me and said, ‘I’d like another scan in 3 months instead of 6 this time.’ Hmmmm. There it is. That question in the back of my mind that’s been sitting there since the beginning, ‘When’s the scan, what will they find?’ I’m back in my scan cycle of life but instead of every 6 months, I’m back at 3 months. I read a blog written by another cancer warrior and it perfectly describes how I feel. The writer described her cancer as a bomb strapped to her chest not knowing when it was actually going to blow and that is pretty much how I feel. Categorized as stable is exactly that, still with cancer, but with stable and slow growth. Going back to the bomb analogy and combining it with statistics for my particular ‘brand’ of cancer it goes something like this…in 5 years, 50% of the bombs will have exploded and in 10 years, 9 of 10 bombs will have exploded. Barring all scientific advances, that’s a little rough to think about and that is what keeps my heart heavy and my mind focused on time. The other side of the coin is this, science is advancing faster than the doctors can keep up with so it seems statistics change on a daily basis, hallelujah! More time.

Today I wear a combo of two Lipstick Journey lipsticks, Stormy on the bottom and Fierce on top. It is my favorite combination, it deepens the red and ‘lightens’ the storm. Perfect. Cheers to a new day!

 

Living in the Loop

15 Jan

 

img_3582-1

Photo cred: Leanna Vite Photography

Last Tuesday when I was driving home from work I felt something in my eye, like an eyelash fell into it or something. Annoying, but since I was driving I obviously couldn’t do anything about it. When I got home I forgot about my eye but as the night wore on, my left eye started to feel more and more irritated. Before going to bed I looked in the mirror and my eye was pure red from my pupil down. One thing I hate about having metastatic cancer is that you are hyper aware of any changes in your body so yes, the first thought that came to my mind was that cancer had spread to my eye. When I first got my metastatic diagnosis I spoke with a couple oncologists. They both told me that it’s a guessing game as to when the tumors start to really advance; could be a month, could be years. One story that came to the forefront of my mind last Tuesday was a patient of one of the doctors had stable mets in her lungs (like me) for a few years but had to start treatment when a cancerous nodule showed up on her eye. With my eye situation that’s all I could think about so the next morning I called an ophthalmologist. Turns out I had a couple broken blood vessels from who knows what but my eye is better. Cancer stinks.

In a New York Times article last December, Kate Bowler describes her journey with stable Stage IV metastatic cancer. I resonated with most of the article (which I’ve read more than a few times) but one thing really jumped out at me and it was the way she described time. She called time ‘looped’. Time did not point to the future anymore but looped around every 3-6 months between scans or treatments. She says that hope (for the future) sometimes poisoned the work of living in the present. I get it. I find myself living in this loop. My next scan is in about 6 weeks and what has been in the back of my mind is slowly creeping back into the forefront. Elizabeth Gilbert said in a recent talk, ‘There is no such thing as a dying person. There are living people and there are dead people.’ So true. How do you live in the present without falling backward into the wasted time of the past while simultaneously grieving a possible non-future? Well, you just live. You soak in the beauty of love and family and friendships. You squint at the sun when it decides to show itself in Michigan winter. You keep dreaming, writing goals and going for them. In my case, you start a lipstick company 🙂 You just. keep. living. Every moment is a blessing and maybe hope is a moment thing and not a monumental thing. Maybe hope looks like the kindness of strangers, the new people I’m meeting, the people still praying for me after all these years with cancer off and on, time with my friends and family, and of course, knowing God truly loves me. So, I live in a 3-6 month loop of anger/hope, fear/hope, joy/hope and remind myself that it’s ok. I’m alive today and thank you God for the air that I breathe.

True happiness is to enjoy the present, without anxious dependence upon the future, not to amuse ourselves with either hopes or fears but to rest satisfied with what we have…’~Seneca

Today I wear a combination of The Lipstick Journey colors because yes, you can layer them! I chose the deep plum shade of Stormy as the base because life is dark sometimes but we need the dark to see the moon and stars. I layered Fierce on top because despite the darkness we can press on fearlessly and fierce! To layer my lipstick swipe a thin layer of the first color and pat it in with your finger. Wait a few seconds and swipe the next color on top. I LOVE these two together! Cheers!

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