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

But as for me, I will hope continually, And will praise You yet more and more. 

Psalm 71:14

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.