Thursday, August 27, 2015

A Slippery Slope

Kids and water...there are very few scenarios where more joy can be experienced. If its done with cousins, icing on the cake! Pop has a super-sized slip-n-slide for super-sized fun!

I love this series, beginning with C4 "greasing" the track.

Monday, August 24, 2015

Doing Battle, Week 48

In my head, I'd been preparing an exit strategy to the weekly cancer posts. I figured it wasn't all that important or necessary to post to the very end of my healing from surgery so I was going to close out this series that you have so faithfully kept up with.

(The update for this week would be that I'm getting stronger and stronger. I'm walking a 3.5 mile route each day...sometimes the girls join me on their bikes, and most recently I'm pushing a five year-old in a stroller. I'm doing light weights for upper body and my appetite is back, though I'm still not very adventurous with eating. My pain is minimal...its been at least two weeks since I've taken anything, even Tylenol. The visiting nurse comes three times a week, so I'm being closely watched.)

However, we found out last week that we are not yet at the end of this chapter/road/journey/season.

I've deliberately held off on sharing the pathology findings from surgery because we didn't know what it meant as far as next step.

That changed this week when we met with the Sloan oncologist (who had already been in communication with my surgeon). We talked about the findings of the report , which showed the margins of healthy tissue around the tumor were great. The disappointing news is that a number of cancerous nodes were removed.

She, along with the Tumor Board (the Tumor Board!!) believe it is prudent to do another round of chemo to deal with any other possible cancer cells before they have a chance to multiple and spread. Its possible there is currently no cancer in my body and this ends up being precautionary...there's just no way to know. Since I am young (at least relative to the cancer world) and in otherwise good health, they are being aggressive.

The oncologist (who is young and personable and highly regarded in her field) strongly believes in the FOLFOX regiment. Its the one I started with but then had a strong, adverse reaction to after the second round so I was switched to FOLFIRI (in case you speak chemo :). Dr. C., the Sloan oncologist respectfully disagrees with some of the decisions made by our local oncologist surrounding that episode. She has had experience with patients having a reaction and wants to use a different tactic in administering the drugs.

What that looks like for us is some very long chemo days in NYC. Its funny how our perspectives have changed. Back in October we thought it would be burdensome to drive to NYC once every two weeks...eight times! We were so thankful to be able to get the treatments locally at a hospital only 30 minutes away. Now, all these months later, we're thinking, what a piece of cake! We only have to drive to NYC once every two weeks...and we can come back the same day! perspective!

So, September 2nd we'll start chemo treatment 1 of 6 / 9 of 14....six additional rounds of chemo added to the eight I've already had. The news was surprisingly undisturbing to me. Maybe its because I'm still busy recovering from surgery. Maybe its because I feel like I can do anything as long as they don't ask me to do radiation or surgery again! Those things certainly contribute, but what I know is really holding me together is God's grace.

I've gotten really good at just doing today and living in the grace He provides for the day, the moment. God's grace sustains me and carries me.

He is aware of the pathology report and my family and the difficult situation you are facing, too...He sees and He knows. It is his good pleasure to provide just what we need. He is good, all the time and his grace is enough for you and its enough for me.

Sunday, August 23, 2015

Project 365, Week 34

We squeezed out lots of summer fun in this last full week before school starts. We are still glowing that I am home and we are together and can't seem to get enough of just being.

Life is good.

August 16
Biggest slip n slide in the county is at Pop's house. Hours of fun for these cousins!

August 17
Sienna offered to take the kids to the park with her crew. It worked out well, since I had a fun-filled lineup of social workers and nurses.

August 18
Lots and lots of bike riding and it makes me so thankful for our "new" place. Aiden's even working on The Wheel-y.

Per usual, Shaun has about a dozen really pressing projects and work "things"going, made all the more urgent by the summer/year we've had. This week he crossed off a few items on this building that had been on the list for a long time....that should make the town inspector happy!

I'm so grateful for a wise and hard-working man who does everything with his family's best interest in mind. He carries so much on his shoulders but he knows Who his strength comes from.

Later that evening, Shaun's mom took the kids overnight, so I got to hang out and talk with Shaun while he worked, just like the old days.

August 19
When its a NYC day, we leave at 4 AM to beat rush hour, or at least most of it. What's nice about that is well, the time together of course, but also we get to watch the sun come up and see the day unfold.

More about our trip tomorrow.

August 20
It worked out that the boys were both gone, so Shaun took his girls out. We finished getting the last few school supplies and then went out to dinner.

August 21
Pop and Kiki took Aiden to visit the school where Nathan Hale taught and he came away with stories and a treasured souvenir. Real life super heros!

A week ago we agreed to come off our one-year sabbatical from respite care to take a five year-old for a couple weeks. We talked about it as a family, knowing that I would need lots of help and it was the last little bit of summer, and still everyone was very enthusiastic to take him.

The crazy that comes with an extra "new" body in the house is our normal and its a good bonding and growing experience for our family to have a joint "project". Normal feels good!

This cute little guy arrived at 10 AM with a full supply of energy!

The kids set up an impromptu slip n slide in the rain.

August 22
Hoops, hoops and more hoops!

Aiden-guy is starting school this week so I've spent much of the summer trying to wean him off of  his two hour naps. Clearly, we've had mixed results.

Wednesday, August 19, 2015

Kid Quotes

Amanda: Mom, I love you so much.  If Jesus and Mary weren't alive, I would love you the most. (Spoken like a good catholic school girl ;)

Aiden: I was smarter when I was three.  I dont know about that, honey.  I think you are a pretty smart five year-old. What makes you think you were smarter when you were three? Well, back then I didn't know as much so I had less to keep track of in my head.

Amanda: (in a tattle-tale voice) Mo-oom...Aiden said he loves me as much as the Romans loved Jesus....and they hated Jesus! (Aiden was snickering in the background)

Aiden was headed outside to do an errand outside in the crazy snow. As he was walking out he called over his shoulder, If I don't make it back, Amanda, you can have all my money. I laughed and Amanda said, No really Mom...we all signed contracts the other day.

Aiden: Mom, did you know boys were made out of dust and girls were made from angels. That's why boys like to get dirty and girls don't. Hmm...well, what about Amanda? She's a girl and she likes to get dirty. Well...(shrugs shoulders, shakes head) that's just the choice she makes.

Aiden: Mom, isn't it so weird that girls like boys and boys like girls? It should be boys like boys and girls like girls. Buddy, one day your "bros" won't quite cut it and I promise someday you'll find some merit in boys and girls being together. ;)

(We were in the middle of Aiden's first-ever Battleship game. In the middle of the game, the visiting nurse came so we put it on hold. Later when I came downstairs...) Aiden, ever-so contritely...Mom, can I tell you something that I regress? And then he showed me this paper, where he had written "G1", the position of one of my ships.

Mom, can I tell you a secret? I don't think Daddy should have let me watch Star Wars.
How come Buddy? Have you had nightmares?
No. Its just that I don't think I'm a very good Christian because I think about Star Wars way more than I think about God now.

Monday, August 17, 2015

Doing Battle, Week 47

The steadfast love of the Lord never ceases;
    his mercies never come to an end; Lamentations 3:22

Steadfast love is a phrase that I've been meditating on (recently, and again) seems to be popping up in unsuspecting places and often enough that I've started to pay attention. Steadfast love also means loving-kindness. Not only does God love, but everything he does is kind. There is nothing he can do that does not flow out of a heart of love for me. He wants to pour out loving-kindness on me.

One thing that was initially hard and then we've had to revisit often is the knowledge that we are not in control. I cannot run more miles, Shaun cannot work more hours, we cannot give more money for this to go away. I thought I had given God control, but I've had to realize there were still things I wanted to hold onto.

How foolish of me to want to hold back any piece of my life from his control, not trusting that He'll do what's right. How prideful to think I can do a better job with those things I try to grip onto than the God of the universe!

Control is an illusion and cancer begins stripping that illusion even from Day One. I remember the day we got the word, nearly a year ago, that the tumor was cancerous. As I finished up the call with the doctor, she said someone from her office would be calling to schedule the next step. I grabbed my day planner and went to my bedroom where the kids wouldn't hear my conversation.

When the receptionist called, I was ready with my planner open to tell her when I could fit in a couple appointments, in between school events and soccer games and play rehearsal and work and family events. We never got to what my week looked like, she simply told me who my appointments were with and what days/times to show up. That certainly set the tone.

We've come to understand the hard truth that we are not in control and in our hearts we've had come to the place where we give up control (or at least the notion of control). But we've had to take that a step further....not just releasing control, but embracing God's sovereignty and lordship over all.

Not my will, but yours be done.

Let me tell you, those are painful words to say! But they are followed by a tremendous sense of peace and such a freedom in knowing that this...all of this...does not rest on my shoulders. All I have to do is trust in his perfect love for me. His steadfast love and loving-kindness.

I know this is God's Plan A for my life. My hope is not in understanding someday, my hope is in a God who understands right now.

I will never forget this awful time,
    as I grieve over my loss.

Yet this I call to mind
    and therefore I have hope:

Because of the Lord’s great love we are not consumed,
    for his compassions never fail.

They are new every morning;
    great is your faithfulness.

I say to myself, “The Lord is my portion;
    therefore I will wait for him.”

The Lord is good to those whose hope is in him,
    to the one who seeks him;

it is good to wait quietly
    for the salvation of the Lord.

For no one is cast off
    by the Lord forever.

Though he brings grief, he will show compassion,
so great is his unfailing love

pieces of Lamentations 3


Sunday, August 16, 2015

Project 365, Week 33

Its summer! And this week was filled with nearly perfect weather. We got to do some fun outings and see more family and friends that I hadn't seen in a long time and have lots of chill time, enjoying the easy flow of summer.

Life is sweet.

August 9
The stars aligned and we were all in the house at the same time for a meal. R helped me cook and the kids set the table and we sat down at the table together (except Amanda, who was sick in the other room...but we could hear her coughing so it was like she was with us ;). I can't even venture a guess as to how long its been since we did this. It was nice.

Avery, Aiden and I went for a little walk/ride. This boy is getting so big!

R asked if he and his girlfriend could take the kids to the local fair. I did the driving of the kids, but they did the fair on their own. I thought it was sweet that they wanted them along. Amanda was sick but the other two had a blast. They kept me updated with pictures. :)

August 10
I posted about this day, but here are a few more sweet moments from the beach trip.

August 11
I have a very low tolerance for screens of any type. One of the benefits is I get to listen in on these two playing make-believe with their superhero lego set.

August 12
I need a t-shirt: I survived back-to-school shopping '15!

I go with the best of intentions but my max time for shopping of any kind is about 45 minutes. 

August 13
Someone gifted Amanda a box of horses...she was thrilled!

Lots of choreography to TobyMac songs happening around here.

We got to spend some time with this little guy and his mom and big brother. The last time I saw him he was crawling and now he's a walking machine.

Girls Night In. My porch is meant for leisurely dinners around the table on warm summer evenings. What a life-giving blessing!

August 14
This boy devotes a lot of time to figuring out how things work.

The girls updated their door. Makes me smile.

More visitors! We said goodbye to two of our favorite college students. :( We've done a lot of life with these friends and we're so grateful for the godly influence their girls have had on our girls.

August 15
Battleship with these two...a recipe for disaster. Somehow we made it through, and mostly had fun.

As Shaun headed out to church with the kids, I was struck by how big they looked. Wait! Let me take a picture! Let me freeze this ordinary moment forever. Let me hold on to the richness of life right now.

I'm deciding today to make it a good week. Hope you'll join me!