Tag Archives: transparency

50

16 Nov

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It’s been a long time since I’ve written. If you read my last blog I spoke about being weary. After coming home from Alex’s 6 week hospital stay from the stroke, I was physically exhausted, mentally fried, and soul-crushed tired. All of that turned into functional depression or maybe grief over the past month or so. There’s a lot of talk about mental health these days so it seems ‘safer’ to speak truth and this is me being vulnerable. I say ‘functional’ depression because I continued to work, and smile, and socialize, and maintain my regular ‘high achieving/ goal oriented’ daily life, but then there was the other side. There was the underlying sadness that I could feel wanting to pull me down, and the tears that would show up at random times. It was like skating on thin ice wondering when it would start cracking and hoping I didn’t fall through. I still feel it come and go but I also feel like I’m coming out of it. I have PTSD from Alex’s stroke. When he doesn’t respond to a text within minutes I’m panicky, if he sleeps 5 minutes longer than normal I wonder if he’s ok. I hate it. He has one more procedure coming up to make sure his AVM is completely gone and it happens to be the same week as my CT to measure my tumors. It’s a lot. I probably need therapy.

I have to say this past year has been a challenge (cancer, emergency surgery, stroke, job stress and changes) but for every bad thing that’s happened there have been a million awesome things. Balancing the weight of having cancer was(is) difficult enough, but then I had to dig even deeper for strength to help my son. Isn’t that how life is? Never comfortable? Adversity and challenges come and go to help us know what we’re made of. We can either cower and crawl into fetal position or push forward and say ‘screw you, I’m not going down that way.’ It’s funny, my word for 2019 year was/is renewal. The definition of renewal is to make new; refresh after an interruption; to restore. This has been a year of interruption and constant renewal has been tough. How ironic.

Last October I turned 50 and I felt a mind shift; maybe wiser, maybe more confident. Even though I got my AARP eligibility card in the mail (thanks for the reminder I’m a pre-qualifier for senior discount, AARP), I didn’t feel older… I felt a little more bad ass. In my 30’s and 40’s I felt a little nervous or maybe insecure about getting older but when I turned 50 everything kind of came together. After cancer, divorce, re-marriage, a really sick kid, I know what I’m made of and I’m pretty comfortable in my skin. Here are some of the things I’ve learned so far:

  •  You are stronger than you think
  •  50 is still young, don’t fight it
  •  Stay connected with younger people, it keeps your mind active and there’s lots to learn from each other
  •  Simple is better, there are so many things you don’t need; assess, trash, donate
  •  There are still so many good people in this world
  •  The Golden Rule is truth. If everyone treated people how they would want to be treated the world would be a better place.
  •  Actions are more important than words; Words don’t matter if your actions don’t match
  •  Words can break you
  •  Bad things will happen
  •  There’s no need to be around toxic people, they just poison you and it takes too long to recover
  •  Everyone’s days are numbered, live like it
  •  Sadness comes and goes
  •  Don’t judge a book by it’s cover, read the book (paraphrased from Dolly Parton)~because everyone comes from a really good story
  •  Beauty and ugly both come from the inside, not what’s reflected in the mirror
  •  There’s no ‘perfect time’ to follow your dreams, just dive right in
  •  Loving God is different than being religious
  •  Life is still filled with wonder just open your eyes

Lastly, always be grateful.

Life is short, break the rules. Forgive quickly, kiss slowly. Love truly. Laugh uncontrollably and never regret anything that makes you smile.’~Mark Twain

 

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

 

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

 

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.

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 🙂

New Normal

23 Jun

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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.

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