When I woke up this morning, later that I usually get up during the week, I was tired. Really tired. Didn’t want to move tired. I’ve been this way in the morning for a few weeks. Charlie was already downstairs studying. In the steady silence of the room, my mind slipped down the well-worn groove of wondering if the cancer could be back, robbing me of energy.

I’ve had that conscious thought less frequently since my scan in November. The thought always lurks, but less often lunges.

You can’t really go by the sensations of quirky pains or even the appearance of small amounts of blood, both of which I’ve had off  and on right alongside “clean” scans and scopes. Hard to distinguish between the new normal after surgeries and treatment and the signs of recurrence.

So I continued lazily relaxing in bed this morning without the will to get up. Maybe it was just that Saturday mornings are when I usually try to catch up on house chores.

But then I remember that Shayley was going to write something for a summer camp application at Grandma’s yesterday on my laptop. Without thought, my eyes POPPED open and I was energized and scrambling to get up and go look for it.

After reading that, I was anxious to read the latest on the showdown in Egypt. Then, something from Dana Jennings on nytimes.com caught my eye. Good, he’s alive, was my first thought. He had advanced prostate cancer and treatments about the same time I was dealing with advanced colorectal cancer. Though I hadn’t seen them before, the titles of his intermittent columns about life “after cancer” were instantly familiar:

Bidding Farewell to Ghosts of Pain

He talked about dealing with major depression AFTER he finished treatment. I’ve been fortunate not to be hit by that.  I could really relate to other things, though. He also talks about how fighting cancer broke him of his rural-New Hampshire tendencies to refuse medicines for pain, etc.  He talks a lot about living in the here and now, enjoying every minute. He talks about how he has no patiences for jerks  and no interest in trivia. Rather, he treasures “holy time” with family and friends.  As I recall these, I imagine they sound trite or predictable and yet it was somehow reassuring to me to read my own feelings expressed so well by another.

Looking now at the topics of things I’ve written about, I see “b12 deficiency” on the list. Maybe I need to have that checked. Maybe that’s all it is.

Meanwhile, Shayley will be home soon. I’d better get to the chores so I’ll be ready to hear her new stories.

Lydeana

We’ve had a great several days.

Sunday morning we were nearly late for church, which wouldn’t have been all that unusual except I needed to be there on time to share my testimony. I had invited my family and everyONE arrived before us! We had been rushing around the house packing for our camping trip–which we were heading on right after church and lunch with my family. If you are ever scheduled to speak for the first time at your church, I would recommend not trying to pack for a camping trip the same morning–ESPECIALLY if you’ve just started a major new diet restriction (gluten-free) that requires a lot of extra effort!

It all went well. It was so wonderful to have my family all together in our church.

After a quick trip to the store to get a loaf of bread for Charlie and Shayley and Reese’s pieces for me, we headed on to Smith Mountain Lake State Park for three nights.  The campground was largely empty, just as we’d hoped. And we got the closest campsite to the bathhouse, just as I’d hoped! It rained the first evening midway through fixing supper, but it was no big problem. Charlie and I have been rained on so many times camping that we should be prepared and mostly were.

Charlie had everything neatly organized and packed up. (He and I use to backpack, so after that, car-camping it luxurious.) We were heading out fishing Sunday evening and I stopped him from carrying the boxes of food back to the car. Having gone down in elevation a couple thousand feet, it didn’t feel like bear country. So we enjoyed fishing–Shayley and I saw lots of fish, even though Charlie’s the only one who CAUGHT any.

When we got back, Shayley and I headed straight for the bathrooms at camp. When we finally got to the campsite, Charlie was stirred up. He pointed up a tree, but it was so dark by then I couldn’t see a thing. Turns out, just as Charlie had walked up, he had seen our loaf of bread climbing a tree. Well, of course, it was being carried in a raccoon’s mouth. He had nothing to throw at it. And it was one of those rare times  when  he had no weapons around.

Most of the food was in a large cooler, locked plastic chest, and a rubbermaid box, but that raccoon had knocked the one cardboard box of foods off the table and sure enough it had cracked  open and hatched out a fresh, full loaf of bread for him.

Before we went to bed, Charlie carried that box to our vehicle and locked it inside. As we lay in our sleeping bags trying to go to sleep, I kept thinking of that loaf of bread being hoisted up a tree and told Charlie that perhaps this was a sign that we ALL needed to give up gluten! (wheat and related flours) He rather thought it was a sign that one should never be without a weapon. And he found a throwable stick before bed, just in case another opportunity arose.

Sure enough, during the night, he heard two of them in a tussle and he got after them. They ran up trees, put he beaned one at 25 feet with a stick. Of course, one of them dropped  a bread-bag bomb on him.

Shayley was very interested to learn the next morning that the raccoon had eaten most of the loaf of bread, except the crust. A non-crust eater herself, she quickly  reasoned that if a raccoon does not eat crusts, she should not be expected to either.

We spent our days playing beach volleyball, fishing, cooking and eating–plus Charlie and Shayley swam at the beach area. Shayley also got interested in a book I brought to read, Know-It-All: One Man’s Humble Quest to Become the Smartest Person in the World. It was one of those $4 books I’d never heard of from the book fair. It’s about a fellow who set out to read the Encyclopedia Britannica–all 33,000 pages. it’s  a mix of what he learned and lived during that time.  I read it aloud to her during times I had to rest and before bed. The next thing I know she started reading it alone with I was cooking or cleaning.

The second night, rather than tote all the food back to the car (about 100 feet away) , we decided to just  tuck  all the food boxes up under the seats of the heavy picnic table, so that the raccoon would have no room to open the lids. Let’s just say based on what I now know, I would never bet against a ‘coon when it comes to food. During the night we hear the rattle of plastic. Charlie bounded out of the tent only to find the raccoon had somehow opened the rubbermaid container enough to slide out the bag of rice crackers Charlie had gotten me. If you’ve ever had rice crackers, you’ll know why I felt I  could call it even with the Mr. Raccoon after that.

The next morning while Charlie was gone to the bathhouse, Shayley and I heard crumbs falling from trees. (Manna, anyone?)  I was telling Shayley about the stolen rice crackers. I started mimicking  a raccoon who was breaking into his newfound stack. “Pfh!!. . . that one’s no good, let me try the next one . . Pfh!!! no good.  . . . let me try the NEXT one.” She stepped this up a notch, “Pfh, where’s my gluten. . Pfh, where’s my high fructose corn syrup . .  Pfh, where’s my artificial preservatives . … .”

We left nothing outside the car for the rascals last night. But this morning, we heard folks across the way comparing notes on the marauding raccoons. We joined in the fun with our stories–perfect strangers around a picnic table near the bathhouse, bed-head and all–and everyone laughing quickly and heartily. It gave me a new appreciation of what those raccoons had done. They had made friends of strangers, and given Click to view slideshow.great stories and memories for us all.

And speaking of “for us all,” I’m an even bigger fan of state parks than before. Smith Mountain Lake State Park is a 1,200 acre area with 50 camps sites, miles of trails, a beach area, boat docks, fishing piers, picnic areas, discovery center, free interpretive activities (we did the raptor hayride and the treasure hunt/orienteering), and OH, the wildlife. 

Love to you all,

Lydeana

Dear Friends,

 Today was a 10 hour day and was well worth it.  Everything in the CT scan was clear!  Now Lydeana is laying in bed moaning dreadfully and I’m barely holding on due to an acute case of Golden Corralitis.   Celebration over health can be devastating in the short term and not great for the big picture either.

 A little more detail about the days events were as follows:

1) Blood work was taken, a port access needle installed and Tiger wasn’t talking.

2) The oncologist was somewhat baffled about the meaning of a white circle that appeared on Lydeana’s leg and had some theories about it though it wasn’t worth the effort and time to check into.  Meanwhile Tiger’s wife was using a golf club to save him from a fire hydrant due to his rumored affair.

3) Radioactive contrast was injected and Lydeana went bravely through the scan while the tree trashed Tiger’s right front quarter panel out of jealousy from getting too close to the fire hydrant.

4) Waited several hours in hall way to speak to surgeon about results as the Florida state police investigated the situation further with the possibility of a great scandal unfolding.

5) Got to see surgeon and found out all looked good and could come back for the next scan April 6, 2010 and that Tiger would be charged with careless driving the same as you and I without legally having to give any bigger down payment with a chunk of his soul than the news dogs already took.

 The moral of the day is that you can still occasionally receive good news from hospitals and CNN.   It’s still exasperating to have to go through it over and over to get to that point.

We want to thank you all for your prayers because they mean so much to us and are the biggest reason for this outcome.

 Love, 

Charlie

Dear Friends,

I’ve been doing better the last few days and have actually worked pretty much a full week so far. I appreciate those of you who have written and sent notes of encouragement.

Wanted to let you know that Shayley will be a featured guest at the free, First Fridays event at the Jacksonville Center for the Arts in Floyd this Friday. It goes from 5 to 8 p.m., I understand. Books will be available and Shayley will be signing, so please drop by and see us. There will be snacks and lots of cool stuff to see. (If you don’t know, the Jacksonville Center is a renovated two-story barn just outside the town of Floyd, on Route 8 South—email us or see www.jacksonvillecenter.org for directions.)

My next vaccine at Duke is Tuesday, November 10. Since the doctor said the reactions will likely get worse each time, we’re just going prepared to stay in Durham for a few days in case we need to get back to the hospital there. Just two more vaccines to go!

I made the mistake a couple nights ago of looking at the latest prognosis on Stage IV Colorectal cancer patients. The average survival time past the metastatic surgery is 13 months. I can’t quite relate what it feels like to read numbers like that. No matter how much your head knows that averages encompass wide ranges and that it’s not an upper limit, it sets your heart and mind sideways, and you get a queasy feeling in your gut. Here in a couple weeks, I’ll be at the 12-month mark. I’ve realized that for a year-and-a-half now I’ve been adjusting to the idea that life may span only another year. The funny thing, my mind never allows that time to reduce. It’s as if I’m in a perpetual mode of living one more year. Not a bad way to live, as long as it’s always one more year.

I don’t dread Tuesday all that much (yet), but already I feel the tension rising in anticipation of December 1st when I have my next CT scan at Duke. I think I used this analogy back in early July, but it’s like waiting to see what your sentence is—except you hope for life. When questionable pains or discomforts arise, the anxiety only builds. In these times, the highs are higher, as you try to thrill in the time spent with family and friends, and the lows are lower as anxiety swallows patience. I know that I become more fun in some ways, but also more difficult to live with and be around. So pray for Charlie and Shayley!

I continue to pray that God grant me 9 more years to raise Shayley and to encourage Charlie as he transitions to a new career. I thank you for your patience in listening to these things, and for your countless prayers on this journey.

With love, Lydeana

Halloween costumes--Shayley is a cat ninja.

Dear Friends,

 Well, I’m a little down tonight.

I’ve had a return of some very inconvenient spells of got-to-be-at-a-bathroom late this week. I thought I was over it by last night, so I had big plans of taking Shayley and her friend, Jacq, to trunk or treat and then meet up at church with more friends for trick-or-treating in town. I was extremely careful all day about what I ate, and even ate supper at 3:30 in the afternoon to give my tummy time to settle before time to head out. So much for that. I never made it past my mom’s house in Floyd. I did get to see her and Jacq in their costumes (Shayley, cat ninja; Jacq, dead bride). My mom took the girls to trunk or treat, then thankfully Charlie got off work in time to take them around with friends in town.

I know I cannot really whine about this.  I’m alive and here and got to spend the day with Shayley.  But I would so like to be able to get out and do more.

Halloween has never been a particularly good day for me.

Nine years ago tonight I was preparing to return to work the next morning, ending my maternity leave. It was a hard night. We were still staying at my mom’s house because our house was half torn apart amidst an unfinished addition. Charlie and friends decided to do stuff together that night and forgot to call me. 

Six years ago today, my first colon polyps were found. They were benign and the fact that I had the good fortune of having them found and removed without ever having any symptoms gave me the false sense that vigilance always equals safety. That very evening happened to be the first time Shayley wanted to go trick-or-treating (she was 3.) I was still half groggy from the sedation of the colonoscopy (it’s much better now-a-days), but I walked up to a few houses with her and Charlie. It was a surreal feeling, having had the doctor tell me that day I would not have lived to any where near 50 if he hadn’t found and removed those polyps. I was 33 at the time and couldn’t quite fathom that thought.

Last year, the entire month of October seemed like a nightmare, and I’m not even going to try to remember the details.

This morning Tater started barking and barking and barking. He tends to only bark at stuff at night, about time we’re trying to go to sleep. And usually it only lasts a few minutes as we hear him rushing about the yard after possoms or raccoons or something. But this morning was different. He kept looking down across the driveway as he barked and we looked and looked and could not see anything. He kept on with great ferocity. Charlie tried letting him in the house to calm down, but he could not be settled and wanting back outside. He barked almost constantly for over an hour, including full-throated howls with mouth pointed vertically skyward.

A few hours later, after Charlie had gone to work, a neighbor drove up in his jeep. He was bringing up fresh baked bread and pickled beets, and also a word of warning. A bear was in our next door neighbor’s yard this morning. And  a few weeks before someone had seen one down at the end of our driveway, he said. He advised that we keep a close eye on Shayley since she loves to play in the yard. Thank you, Tater. You’re a good boy.

 Vigilance. It’s no guarantee, but it doesn’t hurt. I guess Halloween’s have not been so bad.

 Thank you for your continuing prayers.

The talented Mountain View bluegrass and comedy gang!

My Dad (skinny one) next to Earl Scruggs, on Earl’s front porch.

Dear Friends,

 I thank you all so much for your encouragement and well wishes following the vaccine. I’m doing really well with no discernable side-effects from the vaccine except a sore, red knot on my right thigh. I don’t know if it’s as much reaction as they hoped for or not, but they asked us to literally measure and record the size of the redness and knot.

 I had fun on Saturday and Sunday. We didn’t have too many people at the book signing—things only started getting busy at the Store about time we were planning to leave. By that time, I was tired, so we called it a day. I guess we should have selected an afternoon time, but who knew?! We had a great time nonetheless with those who came. And we enjoyed spending some time with author and photographer Fred First. He taught us several things—like having more stuff on our table than just the book so people will feel more comfortable walking up to the table. So, if Shayley wants to, we’re going to try making some bookmarks and notecards during the next few evenings to have with us at Sweet Providence Market this coming Saturday morning (10 a.m. to Noon.)

Except for still having to nap or at least lay down for a while each day, the last 3 days have been remarkably unremarkable as far as symptoms overall. I’ve cut back on dairy products, and it actual seems to have leveled out the bowel swings somewhat as long as I rest often. I LOVE dairy, though, so it will be harder to gain weight when I’m trying not to eat ice cream! Thankfully, there are still fresh tomatoes to eat—they make so many things good.

Saturday evening I met up with 3 friends I graduated high school with. Hard to believe it’s been 21 years. We had SUCH a good time of fellowship and fun. We went to Mountain View Church in Meadows of Dan for a special event—where the men served our meal, plus several of them put on a great bluegrass and comedy show. (e.g. Q: Who was the great financier in the Bible? A:Pharoah’s daughter—she went down to the Bank of the Nile and pulled out a little “prophet.” –OK, well, it was funny in person.) It was the second time that day I felt almost visited by my Dad: earlier at the Country Store someone showed us a book there that had a picture I’d never seen of Dad playing his banjo with the Bolt twins; then, my dad had once sold a Gibson mandolin to the pastor, Terry Martin, who was playing Saturday night; then when someone else picked up a banjo and began to play, it was almost tangible– everytime I hear a banjo in church, I feel the resonance of Dad’s music in my soul.

Then Blonnie Gregory—who along with her husband, has been ministering from an 18-wheeler for over 30 years—shared some thoughts with us. Her message was about praying for God’s guidance at important decision points in our lives. I was riveted by her stories, especially of the teenage runaways she’s tried to help at truck stops around the country.  One young girl in California came up to their chapel (in the trailer of their truck). Blonnie listened to her and then tried to talk her into going home. The teenager assured her that she knew what she was doing and that she was careful who she climbed into a vehicle with. Again, Blonnie begged her to go home. Blonnie watched when she left and she climbed into a truck with a stranger. Three weeks later, Blonnie saw a wanted poster in another truck stop in California: the person had stabbed the young girl to death.

She told another story of a young man they met who had been out on the road. She waved him down and gave him coupons to McDonalds that the church had given them. After they began to talk, he told her his story; there had been 9 of them on the road at one time—doing as they please—drugs, alcohol, free-wheel living. Now, the other 8 were dead from various accidents, violence and overdoses. She asked him why he thought he was left alive. He said, with tears, that he felt sure it was because he had a Mom and Dad at home praying for him.

I am convinced there is no more important thing we can do in this world than open our hearts to God in prayer—about our children, our family, our friends, our leaders, our hurts, our failures, our losses, our doubts, our fears, and our ideas. While prayer can often feel like an unanswered message, I am convinced it is more. Prayer changes the pray-er, for one thing. And, as we see in Scripture, there are times that God has intervened in the course of history because of prayer. None of us have the promise of tomorrow. I am convinced that I have had my life extended to this point because of the faithful prayers of you all. Saying a simple “thank you” feels so inadequate, but I don’t know what else to do.

I am so grateful to have had some very good days of late. Shayley and I have played a little ball in the yard the last two evenings for the first time in over a year. I have actually felt relaxed and had some fun.

I thank you for praying with me for more time. And I pray that I will do what God wants me to do with any time I’m given.

Love,

Lydeana