"For you created my inmost being;

you knit me together in my mother’s womb.

I praise you because I am fearfully and wonderfully made;

your works are wonderful, I know that full well.

My frame was not hidden from you when I was made

in the secret place, when I was woven together

in the depths of the earth. Your eyes saw my

unformed body; all the days ordained for me

were written in your book

before one of them came to be."

Psalm 139: 13-16









Friday, February 23, 2018

Patients in the Middle

There's hope.


Remember how I said we are praying for big things? That there's at least a chance that they are wrong? I have had some people storming the heavens on my behalf. Tuesday, and Wednesday, two different doctors looked at my scans, convinced the cancer has returned. They read my scan as "concerning for neoplasm, possibly metastatic" with multiple lymph nodes lighting up as well. In a young person, who is otherwise healthy, with a history of cancer, there aren't too many other things they think it can be. Wednesday morning I spoke with my oncologist, and it was a very somber conversation. He had spoke to the radiologist, who was pretty sure it is cancer.

Three hours later, he called me back. A testament to his incredibly persistent and caring nature, he had reviewed it with another radiologist. This time, he told me there is at least a chance that it could be a "metabolically active" fungal lung infection. It is possible for me to have been infected without significant symptoms, and what we are seeing on the PET scan could in fact be my body clearing the infection. At this point, I feel like I am on a crazy roller coaster.

Yesterday I saw an infectious disease doctor who agreed that it could be a possibility. In Ohio we live in an endemic (widespread) histoplasmosis area, and I have traveled to other states where there are other types of fungal infections that are prevalent. They are testing me for all of them. She said I will still need a biopsy to be sure it isn't cancer- some of the labs can remain elevated for months to years after an infection, and sometimes they can come back totally negative (meaning normal) even if you still have an active infection. So given my history it's the logical choice to be sure. That's scheduled for next week. We also have backyard chickens, which are known to carry histoplasmosis. Since the coop floor isn't dirt she said it's less likely for the fungus to grow there, but it's possible. Possible, is my new favorite word.

These last few days have been incredibly trying on our family, but it has made me more certain than ever that I am surrounded by so very many incredible people. People that have been willing to ride this roller coaster right along with us, and let me tell you, that makes it so much easier to bear. I'm not worried about me, strangely, I mostly hate this for my kids, and my sweet husband, and my dearest friends who feel the same sadness and fear that this has allowed into our lives. I hate that cancer has even entered our lives and causes this kind of turmoil. It's our reality, and I feel so terrible that anyone has to experience this other than me.

But, if I didn't let people into this, if I didn't have people journeying along with me, then they too would miss out on seeing what God can do. They too would miss out on witnessing either the miracle we are praying for, or the joy and hope we get to have in the middle of the sorrow because of our faith in Christ. And I wouldn't have people bearing witness to the power of prayer because I have asked them to pray, and I promise you, people are praying.

So we will wait until next week to know for sure. In the meantime, we will celebrate each day with renewed perspective. It is hard to be a patient in the middle, having patience in the middle of the waiting. Thanks for being willing to bear this burden with me.

And if you have any good recipes for Chicken, start sending them my way. Eggs are cheap, and life is precious.

Sarah


Psalm 71:14

Tuesday, February 20, 2018

So you heard it from me, again.

Oh how I wish I wasn't writing this one. I have avoided writing for some time. I mentioned in my previous post that writing forces me to process. Sometimes life hands you more than you want to process.

I got a call today from my oncologist's nurse, telling me that I likely have a recurrence of breast cancer. I have been dealing with back issues for a few months, and have gone through PT/resting/walking (which for those of you who know me, is pretty tough). I am used to being super active. Around Thanksgiving, I got what I thought was a cold, and the cough just never really went away- I just chalked it up to a bad viral season. A couple weeks ago I started with a little sense that I should at least speak up about my symptoms. For those of us in the medical field, it is really hard to be your own advocate- we are often afraid of seeming crazy, and I didn't want to be the crazy former cancer patient with "symptoms". At any rate, I had an MRI of my back which was all clear, but when I developed the cough, and my back pain had not improved, my oncologist decided to order a PET scan. I never dreamed they would find something in my lung.

As of right now, the plan is to figure out if we can biopsy the lung or one of the lymph nodes that are showing up on the PET scan. That way we can tell if it's a new cancer, or a recurrence of the breast cancer. The information I got today from the on call oncologist was that they think it is likely a recurrence of my primary cancer, and that treatment will be focused on prolonging my life. Not kidding. I pray that somewhere in there, someone is wrong.

BUT if they aren't, that's where we are. And I wanted you to hear it from me, just like the first time.
I will do my best to keep everyone up to date on the plan. For now, just know that I am so grateful for everyone's prayers, and we are trusting God for big things. We have seen Him work in Meghan's life- healing her in ways that I may never understand. We trust He is sovereign, but know He is weeping right along with us today.

Right now, all I can do is be still, and Know. And I'll dust off the blog in the process.

Love to you all,

Sarah


The Long Overdue Post

Hello blogosphere....I've been avoiding you, but I swear it's not you, it's me.


Where do I start? The whole of 2016 was spent catching up. Catching up on life, living, working, finances....we had a lot to play catch up with. It's was a crazy busy year. Some amazing new opportunities arose for me- I have been able to speak to several groups now across the country about our experiences as a family, as a mom to a special needs child, and as a cancer survivor. It's part of an amazing bigger picture that I had no idea was coming. I never thought I could get up in front of a crowd of more than two thousand people...but I was given some supernatural courage that day, and I think once you've shaved your head, you can do just about anything:) We had some wonderful holidays where no one was in the hospital (finally!), and made some amazing family memories.

Addie spent the last year growing, and finding out that she has a passion for swimming, horses, and all things chicken. It's so amazing to have children, and watch them discover what they love. More importantly, we as parents discover that they are these entirely separate people. uniquely created, with shades of us as parents, but wholly their own individual selves. What a gift to be able to watch them grow. She had a wonderful second grade year, despite a little run in with a fructose allergy (who knew you could be allergic to fruit??). Anyway, all is well now that we figured that out!

In a similar fashion, Meghan has spent the last year catching up as well. She finished her last year of preschool, and graduated last week. She walked across that stage with her diploma like she had won the lottery. She is becoming more and more articulate, and revealing her gifts one by one. She wants to be a ballerina when she grows up, so this mom found an adapted dance class and let her loose. My little girl, the one we had no idea if she would walk, is going to be in a dance recital next weekend. Pink tutu and all. My heart just cannot stand it. She is also learning to play the piano. As much as I love to watch her dance, I am in AWE when I listen to her play the piano. She will sit there for 20-30 minutes, several times a day, and play. It is obvious that the music is just inside her. It is a gift.

And, because so many people are asking, drumroll please.....WE HAVE OUR SERVICE DOG CLASS DATES!!! October 2nd, Meghan will get to meet her dog. We have to travel to the training facility for two weeks to be trained as handlers, and so the dog can get used to Meg and how he/she can help her, and so that Meg can learn how to give commands, and use the dog for support. We are beyond excited! I am so grateful that she will have this incredible opportunity.

As for me, well, remember when I said I've been avoiding the writing? Well I'm sure I've said this before, but when I avoid the writing, I can avoid the processing that comes with it, and when I avoid the processing, I avoid the pain. And besides, who wants to read about all the feelings....or at least that's what I let myself believe. Because honestly, the survivorship issues are hard. Everything is different, even if it doesn't look like it is, and most people are so glad you are "back to normal" they don't really want to hear about all the ugly. But it's there. It's difficult not to lament over how things might have been different if I hadn't gotten sick. It's difficult not to think about how different our life would be if Meghan had been born without so many challenges. And the absolute last thing I would ever want anyone to think is that I'm not grateful to be alive (because I am) or that I resent my daughter (because nothing is further from the truth), but yes, this life is difficult at times.

I spent a good portion of the last year wrestling with cancer treatment. Off and on medications that are supposed to block the growth of any remaining cancer cells, and prevent a recurrence. Wrestling with the decision not to have reconstruction. Wrestling with body image issues, and hiding my pain with busyness, because when I'm busy I just don't have time to feel. Each oncology follow up appointment is like ripping off a band aid. Living with the constant shadow that cancer casts over your life is at times, unbearable.

But, I made the choice to fight. Sometimes, that means allowing yourself to actually feel the pain, get it out in the open, and shine some light on it. To expose the scars, and the places that are still deep wounds. Healing cannot come if I refuse to let the light of the Truth, the breath of the Spirit, and a flood of Living Water wash over all of them. Sometimes fighting means lifting heavy things with friends (thanks to cancer, I can now squat more than I weigh- Crossfit has been better than any PT program for my range of motion issues after all that surgery, and it comes with an amazing community of supportive people). I am grateful for all of the people in my life who continue to extend friendship, and grace as I figure out this next phase of life. Most especially for my husband, who's unconditional love is truly a gift.

You can't appreciate the joy without walking through the trials...I wonder if I would have missed how incredible it is when I hear music notes flying through the air as I do the dishes, how incredible it is to see an almost 8 year old fight with her sister because now, she has an opinion. Or how sweet the time is, just after dawn, when the air is ripe with His new mercies in the morning.

"Weeping may stay for the night,
but joy comes in the morning.....
I will never be shaken.....
You turned my wailing into dancing;
you removed my sackcloth and clothed me with joy,
that my heart may sing your praises and not be silent.
Lord my God, I will praise you forever."
Psalm 30:5-12, abbreviated.






Monday, January 18, 2016

Happy 2016!

It's been a while...

I realized I haven't updated the blog in over 6 months! In those 6 months, we have met so many new people, and have begun moving toward the next phase of our lives. Meghan was recently approved to receive a service dog and as she has received such incredible support from the community- and from so many people that have never even met her- that we would like to give everyone an update on how she is doing!

In one word? Awesome. This kid...she continues to defy the odds. She is determined, persistent, and tenacious. She can light up the room with her smile, and her sweet little voice is almost too much to handle. Currently, she is really into books by Bill Martin Jr, and Mo Willems (have you read the Elephant and Piggie books? If you haven't you're missing out!). She is reading at a first grade level. Her neurologist is "puzzled".... He says he cannot explain her brain. If you read her MRI report, it's paragraphs long describing all the things that are abnormal. My sweet little poor prognosis cannot be explained. It makes me smile:)

We seem to have figured out a way to manage her blood sugar issues when she is sick, and her high protein supplements have helped restore some balance to her chemistry. She has had some issues with intermittent vomiting, and we don't have great answers. She has had several episodes over the last year, and after a couple of hospitalizations there is a possibility that it is her shunt causing the symptoms. The plan is for her neurosurgeon to explore that possibility the next time she has an episode (we are praying that she decides not to have any more episodes- exploring means invasive testing and possible surgery).

She is doing well in school, and we can see how it's really helping her social skills. Her primary "social therapist" however, is her big sister, who spends countless hours playing with and helping her develop her imagination. Meghan absolutely adores Addie, and there have been many moments that I would like to bottle up for eternity- God's perfect plan included this special relationship, and it is a blessing to watch.

Meg is also in the market for new wheels, and we are getting pretty close! Hopefully in the next month or so she'll have a flashy hot pink ride to show off. She's been walking for almost a year now, but her balance continues to be an issue, and she isn't yet able to navigate long distances or busy public environments without the assistance of a wheelchair. According to her Physical Medicine and Rehab physician, this will likely be the case for several years. Which, makes us REALLY excited about the decision to partner Meghan with a service dog. Our mission as her parents is to help her be the best Meghan she can be- to give her every opportunity to be independent, and have every resource to increase her quality of life. A service dog will drastically change what she is able to do without the help of an adult. We also know that it will help increase her options for education, as the dog can help her navigate a school environment that has it's own unique challenges. There are some decisions that are difficult to make, but this was not one of them. It will take around 18 months for Meghan to receive her service dog once we finish our fundraising commitment. We have once again been blessed by so many family, friends, and anonymous donors willing to be a part of Meghan's story. It is humbling, and brings me to my knees with gratitude. Know that we sincerely appreciate your kindness and generosity.

And did I mention that she is about to turn 4? I can hardly believe it. And there you have it:)

Thankfully things have slowed down for me a little bit. My last big hurdle was a surgery in October to remove my ovaries, putting me in early menopause (groan) but allowing me to take a better medication to prevent a recurrence of cancer. I also had my first infusion of a medication that works to prevent bone loss, and also has been shown to reduce cancer recurrence. My oncologist calls it "optimizing my treatment"...I called it a-little-too-close-to-chemo, but knowing what it's doing helps to provide the mental fortitude to endure the side effects. I'll have these infusions for three more years. Can I just be honest for a minute? Part of the reason I haven't posted is because it has been difficult to write. Writing forces me to process, and I am weary of having to process. This part- the after- when everyone but you has moved on is the hardest part.
Many people assume that once the active part of cancer treatment is over, you are "done". Anyone who's gone through cancer treatment will probably tell you that the reality is that you are never done. Cancer leaves an invisible, but indelible mark on your life. Every oncology appointment, every lingering and permanent side effect from treatment, every time I look in the mirror- it's a constant reminder of the trauma. I am SO ready to move on, and in so many ways I have, but in many more I am forced to re-define normal. To fight the urge to give in to the enemy's whispers. Sometimes I fight using the right weapons-prayer, writing, and physical training..... and sometimes it's easier to shove it aside.

I've done a lot of shoving.

Slowly but surely, I'm learning how to give myself grace. I know I have so so much to be thankful for, and it is the thankfulness that I choose to focus on. I know beyond a shadow of a doubt that God can use anything for good if you let Him. I don't yet know the full spectrum of how He will use this in my life, but for now, I'm still here. I'm willing to share the story that He's writing. He gets ALL the glory.


And that's enough for me.




"You intended to harm me, but God intended it for good
Genesis 50:20




Broken Vessels

I had a wait a while to write this one. In fact...I waited until September 2015. I couldn't post it then. Sometimes being vulnerable, means, well, being vulnerable. Going back to re-read it now, I feel it's just as honest as it was in September, so here goes:


Sweet, spunky, loving and full of life Laura Strong lost her fight against cancer just a few weeks ago. I was only privileged enough to cross her path for a short time, but that chance meeting left an indelible mark on my life experience, as was her way with everyone she met. Her death is a bittersweet mix of rejoicing that she is in heaven, and the searingly painful reality for her husband, three children, and everyone who loves her. This is where the shadow creeps in.

It's easy to process your diagnosis, arrive at a place where you feel "comfortable" with the shadow. Walking alongside it for more than a year now, that shadow and I are well-acquainted. Most of the time it only requires a quick glance- the times when people compliment your "haircut", or you realize you can't wear that strapless dress you've been hanging onto for a few summers. Sometimes, it's easy to shrug it off, turn on the light of the truth, and forget that the shadow is there. Then there are times when the shadow slips it's arms around your spirit and squeezes. Losing Laura was one of those times. It's a reminder that the shadow is real- very real- and a reminder of how much I need to continually seek the light of the Truth, lest I be convinced of the lie of the shadow. Because that's just it...although it is very real, it will never win. It's a lie I can't afford to believe.

Laura's gift to me on earth was a quilt. Her gift to me in heaven is the reminder that my life here on earth matters, and is precious to the one who has every one of my days written in His book. Her gift to you, what she would want you to know, is that you are precious, you are loved by your creator, and your life matters. And she would give you permission to give the finger to anyone who tells you otherwise. We are all broken- whether it's cancer, a disability, or a slight tendency toward anger and a penchant for pride. The difference is what you allow God to do with your brokenness.

Like Laura, I want to be a vessel. A broken vessel, able and willing to be filled up with grace. Jesus uses our brokenness to share His truth- the truth that He was the ultimate broken vessel- perfectly broken for our benefit. And in that truth, we find rest.


Friday, June 12, 2015

Tapestry

Warm weather, sunshine, and relaxing into our summer routine have brought some much needed peace into our house. The morning rush gives way to breakfast in our jammies, watering flowers and enjoying each others company. I took a new job, and that has changed things a bit for us too.  This is a season of first anniversary's for me- diagnosis, surgery, chemo, losing my hair...the firsts were all one year ago and it's been so comforting to relive those anniversary dates and celebrate where I am right now. The future isn't guaranteed, and I have a fresh appreciation for the mundane- washing the windows, tending the garden...all things I didn't have the strength or energy for last year and I so appreciate being able to do these things this year.

The girls have been doing well, and we have enjoyed some new additions to the family- chickens! It's been a lot of fun to have this little project to work on as a family, and they have enjoyed watching them grow. Speaking of growth, Meghan had her growth hormone stimulation test- a most unpleasant experience for her unfortuantely, but we did discover that her body was able to respond appropriately. This is good news, except that it means we are still looking for a diagnosis. We were referred to a different endocrinologist, one that specializes in hypoglycemia. After reviewing some additional labs with her, we were sent home with a ketone meter. We measured her glucose and ketones before meals, and we discovered that she is in a constant state of ketosis! Ketones are the byproduct of protein and fat metabolism, and that basically means that she is relying on her fats and proteins for energy, instead of glucose. The endocrinologist thinks it is a form of glycogen storage disease, and so we will likely re-visit the geneticist to discuss further testing. The good news is that we can treat this by changing her diet, and we now have a better plan for how to treat her when she is sick- with a different formula, and an "emergency plan" on file for the ER to refer to. I am a big fan of having a good plan! Other than that, she has just been working hard at her therapies, and is getting stronger every day.

 Addison just graduated kindergarten and we celebrated her 6th birthday. She is growing up, the littleness is slipping away and we are solidly in that phase of parenting that is equal parts challenging (she is strong-willed and energetic- our parenting style is to do the best we can to give direction to that energy and will, without breaking her spirit), and pure joy (she is silly and loves to laugh!). We have watched her personality develop, and she is growing into a joyful, imaginative, strong little force to be reckoned with!

  One of her kindergarten classmates has recently become ill with a difficult diagnosis. Since she missed her graduation ceremony, Addie and I headed up to visit her in the hospital. When we got there, Addison didn't hesitate- she kicked off her shoes, and climbed into bed with her girlfriend. The two of them giggled, drew pictures, and played with their graduation caps. Sweet little Ava is battling a disease that affects her kidneys, and the fluids and medications have changed the way she looks, (although she's just as pretty as ever), and she has an IV, which can be intimidating for many people, especially children. Her mom and I looked on, and in that moment I realized how all of the difficult things our family has been through has allowed Addison the freedom from fear- and that freedom in turn allowed her to tenderly minister to her sweet friend, in the only way a 6 year old can- by bringing normal to the abnormal, and light into darkness. In that moment there was clarity- there is purpose in the pain. Jesus has woven the things that were meant to harm, into refining threads of character to be used for His purpose. We may not get to see the entire masterpiece, but even a small glimpse at it's beauty blesses me beyond reason, and gives me strength to continue on, in confidence and peace.

 I want you woven into a tapestry of love, in touch with everything there is to know of God. Then you will have minds confident and at rest, focused on Christ, God’s great mystery. All the richest treasures of wisdom and knowledge are embedded in that mystery and nowhere else. 

Colossians 2:2-4

Snuggling with her friend!

We are raising a country girl:)
Summer fun!





Friday, May 8, 2015

Living Proof

I've run in to so many people lately asking for an update, so here it is!

Many of you know we were just in the hospital again. Meghan turned 3 at the beginning of March. We have long been told that she is high risk for hormone deficiencies due to the damage caused from her hydrocephalus, and that they would usually present around age 3. When she was still an infant her growth hormone levels were very low, but came up again after she got her feeding tube and began getting the calories she needed. She's a petite little girl, but has thus far followed her own growth curve, and her other hormone levels have been fine. The last three illnesses she has had have landed her in the hospital with hypoglycemia (low blood sugar). At first they thought it may just be due to her small size, but this admission revealed that a growth hormone deficiency is probably the cause for her low blood sugars during times of stress on her system, such as illness. She just can't make enough growth hormone to keep her blood sugar up when she is sick. We are now scheduled for a lengthy stimulation test next week to confirm the diagnosis. They will start an IV, and give her medication and timed blood draws. The good thing about all this is that if we are able to confirm the diagnosis, then we will be able to easily treat it with daily injections, and hopefully avoid hospital stays every time she is sick! Other than that she has been doing really well.

In other news, we are wrapping up Addie's kindergarten year. It's so hard to believe this kiddo is about to turn 6. She recently lost both her front teeth, and has the classic 6 year old smile:) 





Next week happens to be a big week for me too. It's my final Herceptin infusion, and we plan on celebrating! The year of cancer is finally coming to an end. I get to celebrate turning 34 by running a half marathon, with significantly more hair than I had last time, and no radiation burns to slow me down. A few days later, I get to have my medi port removed, and will finally be able to break free of the active treatment phase. 

This year I will be running to celebrate life, but also in honor of my cousin Nick Nicholson. Nick lost his battle with the demons of depression on April 24th, and our family is forever changed. There are not adequate words to describe the influence he had on my young life. I lived with my cousins when I first moved to Ohio, and again during my first year of PA  school. Those years were difficult for me. I had made some choices that led to finding myself in situations that I never expected to be in. Nick helped me to shine the light of God's truth on my life, and my trials. If you have been following my blog you will know that his influence has turned from that first trickle of truth, to streams of living water that have washed over every difficulty I have encountered since. He was a steady presence in my storm, and served as a truth-bearer, helping to point me back in the right direction. I am forever changed by his love and kindness.

Sometimes we aren't allowed to know complete healing while we walk this earth, and that is so hard to understand. Nevertheless, in the struggle there is always hope. Cling to the unfailing love of Jesus, and never let go. His purpose, and His promises will always prevail.

“Blessed is the man who trusts in the Lord,
gwhose trust is the Lord.
 He is like a tree planted by water,
that sends out its roots by the stream,
and does not fear when heat comes,
for its leaves remain green,
and is not anxious in the year of drought,
for it does not cease to bear fruit.”
Jeremiah 17: 7-8

April 2014

April 2015
One year later. 
One year stronger.