Tuesday, December 1, 2015

Doing Battle, Week 62

Treatment six/fourteen is DONE and Shaun took the pump off on Sunday then I got a much-anticipated shower. Friday I was given treatment with the agreement that I would go on Monday to get a shot to boost my white counts. Getting in the car for a five hour round trip was not on my want-to-do list, but Amy drove so at least I could sit back and relax and we got some time together. The nurse said it was remarkable that in fourteen chemo treatments, this was my first shot. I can't take any credit for it since I never did figure out how to will white blood counts to increase, but I suspect it was the prayer that covered me constantly. And now that I know that I could have been getting shots but didn't, I'm so thankful!

Today is the first day that facing a screen doesn't sound like an awful idea to my stomach so I'm trying to process some of what I'm feeling. Amanda told me yesterday that her teacher was asking how I was feeling. Amanda responded, "On a scale of 1-10 she feels like a 3 or 4 but if you add her joy in there, that puts her at a 10!" :)

I'm DONE with treatments. What does that even mean??

For sure it hasn't sunk in. Maybe it will in two weeks when its time to go again but we don't have to. Right now I am battle-scared and so very weary. Images float through my head of Union soldiers walking back home after the surrender terms had been signed to end the Civil War. Yes, they had won the war, but it was very costly and their lives would never look the same.

Crazy as it sounds, after fourteen months of living and breathing all of this, I have quite a bit of trepidation about treatments coming to a close. Obviously much of this is out of my control, but actively treating cancer at least gives the illusion of control.

At the beginning of all this, I thought I'd just do the couple things they asked me to do and have all this behind me. What I now know is that I will never hear that I'm cured. They will tell me they can't find any cancer in my body but there is always the possibility that some rogue cells escaped radiation, surgery and chemotherapy and are floating through my system to appear at a later date. I'm not a worrier by nature so I wonder how long I will be looking over my shoulder.

But what I also didn't know at the start of this is that the length of my days would become much less important to me than how I spend my days. I cannot control how long I live but I can control how I live. So I'll need to give fear the boot and put my sitting-duck mentality to rest because that is not a place I can stay. God promises to make beauty from ashes and I am curious to watch the plan He has for me unfold, post-cancer.

On Friday we met with the oncologist. She smiled, shook my hand and said "see you in three months". I'll do scans at three months, six months, a year....

In the meantime, we'll continue to work on healing my surgical wound and at some point the meda-port will have to come out. The visiting nurse will continue to come to the house every other day, as she has since July, and try different things to get the wound healed and resolved. What a gift home care is!

There is so much for me to process and undoubtedly I will over the coming weeks and months. I feel like mourning for all that was lost, all that was taken away. I feel relief that "I made it", when there were several dark nights that I wasn't sure I would. I feel adrift, wondering how to re-enter the world, afraid I won't be able to handle the expectations. I feel scared that cancer is waiting to pounce on me again. My heart breaks for the souls I left at the cancer center, waiting for their next treatment, or worse being turned away because there are no more options. I feel thankful, so very thankful to be at this point. I'm grateful for the lessons I've learned. I'm grateful for the people who have been with me at the beginning, the end and all places in between.

I'm sorry if this post is not the victory dance you might have been expecting after my last treatment. (I wasn't sure what to expect myself.) The tremendous pain and deep beauty of it all rests heavy on me today. Bear with me while I get back on my feet and figure out which end is up. :)

Thursday, November 26, 2015


I've stared at this blank page for a while trying to find the words that are in my heart. My heart is just bursting with gratitude as I think about my life, this past year, today. There is so much to be thankful for, I think the following quote sums it up nicely:

I am very thankful for the flowers outside and the birds that sing in the morning and the sunset that's so beautiful and my mom and my dad who love me. ~Amanda

Tuesday, November 24, 2015

Doing Battle, Week 61

Today I am at home instead of in New York City getting my final treatment. I am weary and frustrated, working on just letting it go and taking great comfort in the fact that God knew about today before I ever got here. The control is not mine and I am embracing that fact....SO thankful this, all of this, is not up to me!

Why the delay? Well, it goes back to Saturday morning when I woke up at 3 AM with a fever. It climbed all morning until I took Tylenol when it reached 102.5. There was really no discussion, no decision to be made, it had to be a trip to the hospital. I just said, I don't want to do this and Shaun said, I know...it'll be ok.

So we woke up sleepy kids who'd been at the show the night before and dropped them at my sister's, where our extended family was to be gathering for an early Thanksgiving celebration. We drove on to  New York City and checked into Urgent Care where they immediately started a battery of tests, including but not limited to blood work, chest x-ray and CT scan. Slowly results came in, all negatives for any type of infection.

Many of the tests take several days to come back so they wanted to keep me for observation. I got settled into a room and eventually Shaun left to get the kids and prepare for the last show the following day. I was resigned to it but it was still hard to be in the hospital...again!

Though it was the weekend, I was able to see the fellow who assisted with my surgery and who checked in on me everyday of my recovery in the hospital back in July. My Infectious Disease doctor (you're jealous that I have one and you don't, aren't you? :) also happened to be on-call that weekend so I saw her twice. Truly God's favor to have both of them involved and to see familiar faces!

On Sunday I woke up feeling good and, after a process, I was released and my sister-in-law braved NYC traffic to pick me up. I had her drop me off at church, unshowered and in yesterday's clothes that I slept in, so I could sneak in the back and catch the end of the show and then go home with my family.

Home sweet home!! Tip: if you ever find yourself grumbling about doing the dishes again, or folding laundry, or sweeping your kitchen floor, I recommend checking yourself into the hospital for a couple days. It is a sure cure for being dissatisfied with the ordinary.

A follow-up call with the oncologist's office on Monday gave me the news that she would need to see me before treatment and would not be in the office on Tuesday, my scheduled last day, so we got switched to Friday. Oy!

Its Thanksgiving week, so I am trying to be especially focused on all there is to be thankful for. Even in the uncertainty and frustration I am so aware of how very blessed I am.

Over the weekend, my nurse asked about my support system, with all that I've been through over the last year. My smile got big as I told her we have been extravagantly supported in every way possible by family, friends, church family, strangers, friends of family, family of family, friends of friends. I stumbled over my words as I tried to express the extent of the love we've been shown.

Thank you. For hanging with us all these months, for caring, for praying, for showing love in big ways and small ways. We are so very grateful.

Monday, November 23, 2015

Project 365, Week 47

Phew...I'm home!! I spent the weekend in the hospital because of a fever, but I am finally home with the people I love. My carefully planned list of things to do before treatment and Thanksgiving got shredded up and condensed into today, but I'm so happy to be feeling well and able to do what I need to do to be prepared for tomorrow. 

Here's a look at our week....

November 15
Amanda was having a tough day, as Amanda's are apt to have. While Shaun took her out grocery shopping (brave man!) Avery and Aiden schemed a way to brighten up her day. They decorated her bed and left her a couple special notes and made a colorful melty bead thing. So sweet!

November 16
Homework with tunes.

Homework without tunes.

Pre-bed basketball with their big brother.

November 17
My favorite Jedi-knight.

We've cleared out the cleats and soccer balls to make rooms for the high tops and basketballs.

After work and before rehearsal, Shaun went to the school. He is a leader in the TSA (Technology Student Association) club. He was heavily involved in it in high school, even at the state level, and has the trophies to show for it. I think its so cool that he and Avery will get to do this together. She is excited about doing robotics and catapult.  Clearly, her father's daughter! Avery was checking out some videos of previous competitions. Strangely, there were no youtube videos of Shaun in 1988. ;)

November 18
We all joined Shaun and Aiden for the final dress rehearsal. SUCH an amazing show, SUCH an amazing cast, SUCH a special thing to be a part of!

November 19
It was a rare day that R was here in the middle of the day. He and his girlfriend did school pickup and Aiden got a ride.

This game was played several times this week.

November 20
Woke this sweet boy up from his post-school/pre-performance nap.

November 21
I woke up with a fever that kept climbing so Shaun and I headed to the hospital in NYC while the rest of my family celebrated our traditional pre-Thanksgiving Thanksgiving. I was super sad to miss it, its always so great to be together and Amy and Colombo always do such a great job hosting, but getting pictures from the day made me happy. Check out that gaggle of kids. :)

I hope to post again tomorrow, but I make no promises.

Friday, November 20, 2015

Do Something

As I'm sure is the case with most survivors, cancer will forever be "on my radar" in a very real and personal way. And in new ways, I'm thankful for all the research being done and efforts being made to discover prevention and cures.

I used to be stubborn about going to doctors, preferring the wait-long-enough-it-will-go-away method, but cancer does not generally just disappear on its own. What's more, catching it early can often mean the difference between treatments or no treatments, surgery or no surgery, life or death.

Don't be stubborn! And maybe you are not stubborn but someone who you love is. Go get screened, be diligent about annual checkups and harass encourage those you care about to do the same. If you are insurance-deducitble conscious (hand raised), now is the best time since you have another 40 days left in this calendar year before your deductible starts over in January.

Its also a good time to win some stocking stuffers for the man in your life.

For the month of November, Tommy John is teaming up with the Testicular Cancer Foundation, to broaden awareness of testicular cancer, which is the most common form of cancer in men ages 15-35. 

I have a new appreciation for individuals and companies who are getting the conversation started, spreading awareness and in general just doing something toward a cure and prevention.

How is Tommy John helping?

  • Giving 5% of all sales coming from their limited edition “Stache” and “Ball” print products
  • Contributing $10 for each purchase made by new customers who were referred by someone else
  • Donating $1 for each entry in an Instagram contest up to $1,000 (more on that below)

Please, don't put off any longer what you know you should do today.

Here's the details on the contest...there's still time left!

Thursday, November 19, 2015

How Can It Be

“Upon closer observation, it becomes apparent that every strong upsurge of power in the public sphere, be it of a political or a religious nature, infects a large part of humankind with stupidity.” 
― Dietrich BonhoefferLetters and Papers from Prison 

My sweet little Polish boy. I can't kiss those cheeks enough!

Mom, there were six million Polish people killed in the holocaust. That means there was only one person left because there are seven billion people in the world...right? (He looks at me unsure because this logic isn't making sense to him, but like any good first grader he knows very well that seven minus six equals one. I solved the riddle for him by pointing out the million vs. billion discrepancy.

Last night on the ride home from dress rehearsal, Aiden pressed me about the holocaust. The more we talked about it, the more he struggled with why someone would want everyone to be the same. The thought of it just sounded so absurd to him. The song How Can It Be? came on the radio and he said, Mom! That goes with what we were just talking about. HOW can it be?!

Like his daddy, he has a thirst for knowledge and a fascination with history. I love that. He is sweet and innocent and doesn't distribute his love differently based on size, shape, color. I still smile when I think of his thoughtful question this summer after a family reunion, Mom, is our family mostly brown or tan? Six year-olds have much to teach us. 

Monday, November 16, 2015

Doing Battle, Week 60

Its Monday, the day I write about my week with cancer. I am looking forward to the day when that is not the case. Shaun and I are just barely starting to talk about the possibility that a life beyond this could exist. We have big dreams, like maybe I can take over the household grocery shopping. Or once in a while we might be able to go out in public as a family like to church, or maybe even the two of us...on a date!

Oddly, it feels a little scary to think we are done soon. What does "done" mean? What does "done" feel like? Does "done" exist? For fourteen months we've been actively, daily fighting cancer. How will we know that its ok to not be actively taking action?

My brain, currently operating at about 60% normal capacity (maybe that's giving myself too much credit) swirls these and other questions around. How long will it be before it feels like I am integrated back into society? When can I feel like a good friend again? Can I be the wife and helpmate Shaun needs me to be? Will I ever feel whole again? What will the lasting effects be on our family, on the kids? When will we ever get a dog again? (Just kidding on that last one...mostly, Shaun and I have reveled in a pet-less environment. :)

I don't really have any answers to these questions (other than that last one, which is probably Spring-ish because a household with four kids and no dog? That's just weird. ;), so I try not to spend time on them, but they crop up anyway. So I bring it back to today, to this moment and JUST DO TODAY. And I focus on the immeasurable reasons I have to be grateful.

I read this post today and just loved it, especially this quote:

Based on the story I tell myself, I am content or not, confident or not, trusting or not, grateful or not.
Telling the story is so, so very important. Because I don’t want to forget. I want to make sure I always tell myself the story of what is true, of what is good, of what is life-giving.
The story I tell myself, the one that is true and good, is one of Hope that wouldn't let go, Love that never gave up, Life overcome the grave. That is my story and its not dependent on the answer to any of those questions above.

Arriving in the city....

"our" breakfast place, where we sit for half an hour in between the time we arrive and the time we can check in.

Leaving the city...


Blue hair! :)

I was on the "overflow" floor this time and I got a bed...

...handy because I pretty much sleep most of the time.

A little bit of out-and-about...I got to see the empty dress rehearsal of the show Shaun and Aiden and my sister and niece and nephew and dear friends are involved in.

Even the darkest night will end and the sun will rise. ~Victor Hugo, Les Miserables