Wednesday, June 30, 2010

Stop and smell the....

I mentioned in an e-mail to my cousin in Washington, DC, that it was OK for him to write about the daily goings-on in his life – his part-time job at the U.S. Patent Museum, the garden in his yard -- because I needed – needed in a most urgent way – to read about other people’s normal lives. Tips for people who spend hours in front of a computer include looking away from the screen periodically to stare at something far off. Well, I needed some emotional far-off staring.

He writes:

...Many times in my past my sanity was safely maintained by looking outside of myself and my own situations, observing others and their happenings, shedding my eyes away from my own problems and seeing what else was going on. You, Leilani, are blessed with the ability of observing and enjoying the wonderful delights of our natural world, so don't forget to take a break often to go outside, and dwell upon the beauty of our world, just outside your door.

He is right of course. And so I did. I went for walk. Checked out what was happening in our whiskey-barrel garden,

noting that peas are ready for picking, and lovely blooms are beginning to appear...

in the snarl of passion flower vines on the ground that exploded after Richard mowed the area earlier in the Spring. Even some with orange bugs ...

And then remembering that there might be butterfly weed growing in the back field, so I came up toward the house and headed in that direction.And just happened to notice the wild wisteria vine that has been growing up into the old peach tree by the barn for years. 

The peach tree is about dead, but the wisteria has twisted around itself in a most intriguing way. I don’t think I could have gotten a more perfect spiral had I tried to arrange the vine myself.

And while searching for the butterfly weed, I noticed a fairly large hole in the ground. 

I wonder who made this hole. Groundhog? Fox? And who might be living here now. Who are the people in your neighborhood?

And then I did indeed come across the butterfly weed.

And then I strolled back to the house, spotted our boy sitting under the tree in a lawn chair,

and visited with him a bit and then went back to work.

I later found I had been joined on my walk by 3 ticks. Two were still crawling, and one had anchored itself in the back of my knee. I made short work of all of them.

Saturday, June 26, 2010

Something borrowed, something blue...

Today is our anniversary, and we have reached 39 years together. I wrote at length last year about important personal dates in June, so I won’t repeat myself.

Some things have changed since then. The Father’s Day celebration they had this year did not include a celebration of my parent’s anniversary which would have been the next day, because our mother died in October. This would have been their 65th year together.

They did send these pictures though!

Lots of movies have been made about dysfunctional families trying to cope with crises. I am so blessed to have a very functional family who, even if they can’t be here with us, are here in spirit and on the telephone, and with cards and e-mails. They really do love us, and we know it.

My sister sent us some money to have dinner out. But we have decided to defer our anniversary celebration for the weekend before we go to consult with the oncologist at Barnes-Jewish hospital in St Louis. We are planning an overnight stay at Eureka Springs, a touristy place in Arkansas. We need some time for us...

Today I am remembering my wedding. I do actually remember quite a bit about it. I remember the soloist arrived an hour late, so I did not have a singer. I was not upset by this, because the church had rules about what sort of music could be sung at the wedding. My dad had always dreamed about the “Hawaiian Wedding Song” being played, but it was not among the music that the church permitted. I chose what I thought was the best of a selection of horrible songs, and was actually very glad the singer got confused about when he was supposed to come. 

I remember walking down the aisle to the most amazing organ music I had ever heard – and it was not “Here Comes the Bride,” which was the only song most of the people who attended the wedding had ever heard. Years later, people who had attended would mention to my mom how amazing the music was. The man who played the organ was a professor of music at the college Richard attended, and it was nothing like the typical church organ music one usually hears.

I remember that I had a blue garter on my leg. I do not remember what I borrowed. But in that theme, and obviously changing the subject completely, I am borrowing a couple of pictures that my friend Sue in California, who was a bridesmaid in my wedding, sent  late yesterday.

I have tried on several occasions to take pictures of the dragonflies that zip around our pond, but the reaction time on the camera I use is so slow that it is next to impossible to get a shot of one of them when they land before they take off again. 

So, here is a dragonfly her husband took.

The other thing I find so interesting is that in the midst of the megalopolis that is the greater Los Angeles, here sits a red-tailed hawk on her garden fence. 

And it lets her take a picture of it. Many red-tailed hawks stand sentinel along the highway where we walk every day, sitting atop telephone polls or perching on the road signs, scanning the rights of way and the median, and the sky (!) for a potential meal. A small flock of pigeons have nests on the girders of the highway overpass, and the other day a hawk sat several hours on a road sign near there, I suspect watching for a potential meal. 

But the hawks here are very people shy, and getting a picture of one without a significant telephoto lens isn’t going to happen. Last year when I visited my Dad, a hawk landed on the birdbath in the back yard but my attempt to get a picture of it failed miserably.

Friday, June 25, 2010

Fist pumping air

A minor miracle! Social Security has approved SSI and Disability. The in-person interview that was to take place on Tuesday had to be canceled because he was still in the hospital with the MRSA infection in both legs, which I think came from the intermittent compression cuffs they put on his calves after the operation, but what do I know?. Have any of you met MRSA? Run in the opposite direction if it wants to shake hands with you. Whew. Nasty, nasty beastie.

At any rate, Social Security did the interview over the phone. Poor Richard had to drive a LOT on Tuesday making trips back and forth between various places to accomplish this:

1. Drive 50 miles round trip to the local SS office to get the application that we completed on line for Nat to sign.

2. Drive to the hospital, which is 60 miles round trip from our house in the opposite direction, and camp out there until the Social Security office called.

3. Drive back to the SS office with the signed application and get the receipt (they bent the rules to let him have it) so that could be faxed to the people who are handling Medicaid.

4. Home.

This is great news. One less thing to worry about, and we will not have to call Binder and Binder (for non US people, this is a firm of attorneys that is constantly running advertisements to solicits clients who have been denied Social Security disability.)

I have nothing but praise for the local Social Security office. They have been kind, and gracious, and helpful.

The second miracle was that the doctor cut him loose from the hospital on Wednesday so he could make the appointment on Thursday for the head mapping for the radiation treatment next week and CT and MRI scans. We already had to cancel the PET scan, but -- another miracle --  that will be done on the afternoon of his last radiation treatment next Friday.

And now the funny thing is that now that I am taking back some of the household stuff that Richard had been doing because his new full-time job is care giver, I am having to re-learn how to do stuff in my own kitchen. This morning I stood there at the coffee maker and I couldn't remember how to make the coffee. Oy.

Tuesday, June 22, 2010

A hop on the soapbox

NPR news today mentions a consumer group that is threatening to sue McDonald's because the toys they include in the Happy Meals program children to bug their parents to take them there so they can consume an unhealthy diet.

Obesity in children is not the fault of McDonalds. It is the fault of parents who are not feeding their children nutritious, healthy food at home on a day-to-day basis. Painfully obvious watching the now defunct "Honey, We're Killing the Kids," a BBC reality program we watched for a while about parents feeding their children horrible diets -- until we couldn't stand it any more.

On one of our trash picking up expeditions, I found the cash register receipt of someone who had spent $320 at a nearby Wal Mart Super center on food items. The only fresh fruit on the list was bananas. Everything else was canned foods or prepared frozen food (chicken tenders, etc), or processed meat, accompanied by  and bag after bag of potato chips and other high-calorie snack food. We were stunned. What was even more annoying is that this person was on public assistance, and could have spent those food dollars much more wisely.

Climbing down now, back to work

Monday, June 21, 2010

Pretty in Pink

Sue, one of the former Candy Stripers I mentioned in a couple of blog posts ago, is much better organized than I am and found her copy of the picture I mentioned, and was kind enough to send it to me.

I am the short one in the middle. Sue is on the right side, and Rhonda is on the left side.

Saturday, June 19, 2010

Purple Poo

We have two varieties of mulberry on our property – the sort that start off green and turn white when they are ripe; and the sort that start off green and turn purple. There is only one of the white variety, and many of the purple sort.

When we first moved here, we picked the fruit and I made mulberry jam, which often turned out as mulberry syrup, which was very tasty, but quickly became more trouble than it was worth; after all, one can only eat so much mulberry syrup.

Mulberries are rather messy. A mulberry tree overhangs the road into town and the pavement underneath is black with cars driving over the berries and crushing them.

They are messy in another way too. These fruit are also a favorite of the birds, who gobble them down and feed them to their babies.

And what goes in, must come out.

Infection began developing on Wednesday in his legs, and I took a picture of his dragon tattoo just in case the abscess that was forming damaged it.

Friday morning, after Richard took Nat to the hospital for IV antibiotics, I washed his sheets in bleach to disinfect them after the abscesses on his legs drained during the night. In fact, I washed several sets of his sheets and pegged them out on the line to dry in the warm sun.

They dried very quickly, and a little while later when I went out to bring them in, two of the sheets were sporting purple blotches, left there by birds flying about the yard. So I brought those in and scrubbed them with soap and a toothbrush and back on the line they went.

And when I drove to the hospital this morning, I noted two purple blotches in the windshield of the car. The antibiotics are working, so we hope he will be able to come home on Monday. I will have to wash the windshield for the next trip.

Thursday, June 17, 2010

Calling Nurse Betty

My brother’s wife has had several operations in recent years...

and my brother has done such a wonderful job of taking of her that they tease him about being Nurse Betty.

I am thinking that I need a Nurse Bettys. How wonderful would be if there were a wormhole between here and Lakewood, where they live, and my brother could just hop on over here and help me take care of our boy, or I could bundle Nat up and ship him off to Uncle Andy.

He was doing quite well after the operation, but then staph infections developed in the calves of both of his legs. It hurts to walk, so he has been mostly camped out on the couch for a couple of days and we—and the doctor—are watching him like a hawk and feeding him horse-pill-sized antibiotics.

Back in our high school days, my two friends—Sue and Rhonda—and I joined the Candy Striper program at Harbor General Hospital (now Harbor-UCLA Medical Center), a large county hospital and research facility nearby. We thought we might like being nurses. I have a photograph of the three of us lined up in our red-and-white striped jumpers, but I can’t find it at the moment.

Candy Stripers were volunteers who did nonmedical things to help the nurses out. I learned a bit: I learned how to disinfect a mattress, and do tight, square “hospital” corners with the bottom sheet. I learned how to carry samples of poop to the laboratory for analysis, and descend into the bowels of the hospital to pick up surgical packs for bedside procedures, and run medical records from the emergency department to admitting.

None of us became nurses when we grew up. I don’t know how long Sue and Rhonda stayed with the program, but I quickly found out I did not really have the gift of being a nurse.  I was able to transfer to the research laboratory and I began doing odd jobs for a medical team that was pioneering the techniques of liver transplantation in a dog model. I loved working there. I cleaned the equipment they used in the operations before it was sterilized, and I did other odd jobs for them. They even let me scrub in on the operations to watch and help suture the incisions on the donor animal.

We have all been so remarkably healthy over the years that there have only been a few occasions where I have had to play Nurse Betty. Our boy is really a very good patient -- I can see now why the nurses in the neuro ICU were so kind in their care of him.  I am trying to do the best job I can. I can see that this is just the beginning. I am thankful God is going to give me the grace I need so that I “can do all things” as they come along.

Tuesday, June 15, 2010

Playing with the stapler again?

Every once in a while a glimmer of normalcy breaks through the fog of the future that sort of hangs over us. Laughter is heard once again.

The day after he came home from the hospital, he started talking about the Amazing Stories segment “Go to the Head of the Class,” where some students attempt to kill their professor, played by Christopher Lloyd, but it doesn’t quite work.

He tries to describe how strange his head feels.

"I’m going to take my Christopher Lloyd head and go to bed," he says.

On another day Richard begins making jokes about the row of staples across the top of his head.

Have you been playing with the stapler again?, he asks
On Sunday the great stress reliever: He made us mad, and we sort of yelled at him.

He is not supposed to drive for 2 weeks, but earlier in the day we told him he could start his car and drive up and down the access road. There is virtually no traffic on the access road, and to keep him from fretting about his car going dead,  we figured it would be OK since there was nil chance of him endangering anybody else by slow reflexes.

A little while later, he wants to know if he can drive to McDonald’s and get a hamburger. McDonald’s is about 3/4 mile away. However, the intersection there is very is busy. Traffic comes directly off the freeway across two lanes of traffic into the parking lot, and going back out and onto the on-ramps. Traffic from town coming and going turning left and right into and out of the parking lot. There have been a fair number of wrecks there.

Richard sort of let him have it: “You are trying to use us to say it is OK for you to ignore the doctor’s instructions that you are not supposed to drive for 2 weeks.”

Yesterday, after they got back from seeing the oncologist, a friend and her daughter came by the house with some homemade chicken and noodles. He bends his head to show her. “I have gotten into some serious body piercing in the last week,” he jokes.

Monday, June 14, 2010

Getting by with a little help from my friends...

We have received many e-mails and phone calls from friends and family offering encouraging words, helpful advice, and offers of help.

On top of that, it has been the incredible blessing to read the comments people have left in recent posts. Women I do not know in real life—and most likely will never meet but whose lives I have glimpsed through their blogs—feel like dear friends.

Those who have read this blog for a while will know that I like spiders, so the metaphor of all these prayers and thoughts weaving a web of spiritual support around our little family is appropriate.

It is a very comforting feeling to be “stuck” in this web!

We are not alone!

Sunday, June 13, 2010

What's that gurgling noise?

After almost a week of having no desire to eat or enjoying what food I have eaten, I actually am beginning to think about how much fun it is to eat something good.

Particularly mushrooms.

Mrs Maggott bustled in and out.... in a short while, fourteen sat down to eat. There was beer in plenty, and a mighty dish of mushrooms and bacon.... 

I can envision a huge pottery bowl – a mighty dish – filled with golden brown mushrooms and bits of bacon. Ooooh.

OK, so that little bit from the Lord of the Rings is not at the top of the list of literary food scenes, but setting up yearnings nonetheless. The straw bales our son piled up in late winter to catch his arrows...

have begun to deteriorate after having been rained on repeatedly over the past few months. And they have been sprouting mushrooms.

I love mushrooms. One of my favorite things to eat when I was kid was the beef stroganoff my mother would make on very special occasions when they had dinner guests. She always added fresh mushrooms to the skillet where the onions and beef were cooking.

Yummy. Richard found a recipe that used slices of sauteed portabello mushrooms and peppers with melted Swiss cheese on a bun. It was like a Philly cheese steak sandwich only without the meat. It was very good, but the mushrooms are a bit too expensive to eat that very often

Cream of mushroom soup made from scratch, with real mushrooms.... and a grilled cheese sandwich. I do not think any of these mushrooms are edible, and I am certainly not going to find out. But one must ask oneself? If these wild mushrooms are growing in the straw, could people friendly mushrooms also be persuaded?

Friday, June 11, 2010

How not to take a picture in a mirror

My beautician called a few nights ago. You need to sleep, she said. You take something if you need to. You take care of yourself.

So, I took her advice. I got some herbal stuff to help me sleep, and last night I managed to sleep straight through until 4 am, which was a huge improvement over the night before.

I actually feel good today. I have hope, and optimism.

I also got my hair cut today. I was in desperate need. I look better and I certainly feel better.

I attempted to take pictures of me getting my hair cut. It didn’t quite work out. I am sure there is a technique to this but I don’t have it figured out, yet. 

The only picture that I got with me looking at me..

well, you can see what happened.

My beautician is one of those Steel Magnolia women. It was a great comfort to talk to her today. Better therapy than I could have gotten at $200 an hour in a psychiatrist's office. She and her husband have walked through the fire of pain and grief. Their teenaged daughter died of cancer. She encouraged me more than I can say. I have a feeling Richard and I will be talking with them frequently in the months to come.

Wednesday, June 09, 2010

Breathing lessons

Richard and I have switched places. I am now home, and he is there.

I drove our boy to the hospital on Sunday afternoon so we would be there for surgery intake at 5:30 am. The doctor paid for a room at the hospital's Hospitality House. Our boy had been fine on Saturday, but he was very sick on Sunday and we were frightened. We almost called the ambulance to take him. Instead, we gave him the steroid and waited 2 hours and he got a bit better, and I was able to drive him there.

A lovely man hired by the hospital to greet arrivals at the main entrance came up to me as I hurried back from parking the car, having left our boy sitting in a wheel chair vomiting bile into a plastic tub. I told him where I needed to go. He helped us. God bless him.

Richard came Monday morning just as they were wheeling our boy out of the MRI scanner with fiducial markers on his head to guide the surgeon, and we went with him to surgery holding area and said goodbye, and then waited.

It seemed an eternity, but the operation itself only took an hour. The surgeon was confident he got it all. Yes, it was cancer; not the primary tumor, though. It had the characteristics of a tumor that had spread from somewhere else. Earlier, after our boy had met the surgeon for the first time, he said “I was expecting this crabby old dried-up man, but this guy, he lit up the room when he walked in.” And he did, too. He is young and sparkling, and I am grateful to him.

Our boy, with his head swathed in a white turban, was alert and conscious in the neuro ICU, and was able to talk coherently to some friends who showed up unexpectedly. We were thrilled. They were very impressed that he could talk so intelligently and pull stuff out of his memory banks so easily with all the anesthesia and pain medication in his system.
He was in the neuro ICU until noon on Tuesday. All the other patients in the neuro ICU had traumatic brain injury, and he was the only one who could interact with the nurses and respond. They took to calling him “Nate the Great.” After the anesthesia and the pain meds stripped away his layers of conscious control, the sweet gentle person that lives in there came out, and all the nurses were so attentive and kind to him and to us.

They moved him to the neurology ward yesterday. And he did very well on the mini mental state exam, just a few points below normal. Quick: Count backwards from 100 by 7. Can you do it?

I sat with him in his room all day yesterday. I lost the hospitality room because another patient's family needed it, so Richard and I decided I would come home at 6 pm and he would come up today. 

Just as I was getting ready to leave, the radiologist came in. I stayed for a minute, and heard him say “...thinks it spread from a melanoma from somewhere else...” and “...radiation to the brain where they took out the tumor,” and I heard my son say, “ this fatal?” and he said “well, it probably could be, but let’s not worry about that right now....”

And he started examining our boy, asking about sunburn... “does this hurt if I press here...? “does this hurt if I press here....”   

Melanoma. We did sunscreen, we put t-shirts on him when he went swimming. Melanoma. "Now, that's just the preliminary diagnosis. That's not the final report."

Twice in 8 days I am hit hard in the gut with a 2 x 4. I could not hold it together for our son. I should have stayed to hear the rest of what the radiologist said. I did not. I left.  

On the way home I passed an Amish family in their horse-drawn wagon, a mother and father in the front and in the back, two little girls in their black bonnets and dark blue dresses. One of the girls turned and waved at me as I passed. Oh.

I come up on another horse-drawn wagon up ahead about a half-mile. This one with 3 men in the front, and in the back, two little boys, smaller versions of the men, sitting side by side, engaged in serious conversation,  talking with their hands. Little boys in straw hats. Little boys...

Breathe in.... breathe out....

Saturday, June 05, 2010

Freight train... freight train....

Friday afternoon on the way home from Springfield, we drove alongside a very long freight train loaded with cargo containers heading toward Tennessee. The train was going a little slower than the cars on the highway, so we gradually passed it by, crossing intersections with the four rumbling engines at about the same time and getting the blast of the horn in our ears.

Richard wondered how it is that people pull out in front trains and sometimes get killed. The town veterinarian was killed in that way not too long after we moved here. Two people in the nearby town chose suicide by train in the last couple months, and there was another car-train accident.

We wondered how horrible it must be for train engineer to see impending death in front of him on the tracks and unable to do anything about it.

I wondered to myself how horrible it must have been for the little old woman I visited every week to bury three of her children, unable to do anything about it.

Had I brought my camera with me on Friday, I might have taken a picture of the orange and red engines. I would not have taken a picture of the Amish man in his horse-drawn wagon waiting to cross the highway. I would have tried to take picture of the lake of fog nestled in a field between two low hills.

The waiting room of the neurosurgeon who will remove the tumor from our son’s brain on Monday morning has a marvelous saltwater fish tank. I would have tried to take a picture of the lovely red and white shrimp that was busy patrolling the rocks and the sand looking for morsels to eat. It was the only inhabitant of the tank that didn’t like it was mentally ill. A small trigger fish swam in incessant circles... across, down behind the rocks, out the front, turn, across, down.... over and over and over. It made me sad to watch it.

So much has happened in a week. Last Monday we were in the emergency department, this Monday we will be in the surgical waiting room. We were rather surprised that the neurosurgeon scheduled it so fast. It gives us a feeling of forboding.

The hospital has two amazing courtyards formed by the intersections of very tall wings of the building that are planted with beautiful hydrangeas and hostas, and there is a unique water feature with a large round black stone with veins of gray, highly polished, that rests on a pedestal and is squirted by jets of water that cause it to rotate. I would likely have taken pictures there.

The hospital is a Catholic hospital, and I felt very comforted as we walked from place to place to see scripture verses on the walls and pictures of biblical scenes.

I feel like our little family has been loaded on board a very fast moving freight train and we are hurtling along and it is going to go where it goes and we don’t have much say about it. I am glad that I trust that God is handling the controls.

Two scriptures take turns marching through my mind....

Job receives the news that all of his children have been killed by a whirlwind. At this Job stood up, tore his cloak, shaved his head, and threw himself prostrate on the ground, saying
Naked I came from the womb, naked I shall return when I came.
The Lord gives and the Lord takes away; blessed be the name of the Lord.

And the other one
But he was pierced for our transgressions, crushed for our iniquities;
The chastisement he bore restored us to health, and by his wounds we are healed.

Lord Jesus Christ, Son of God;
Let your healing flow down upon our son.

Tuesday, June 01, 2010


Yesterday, I heard a whippoorwill calling from the woods when I stepped outside at 5 am to let the cat out of the basement. I was reminded that my friend Naomi never enjoys hearing the whippoorwill because she associated their song with the emotional state she was in after her husband was critically injured in an industrial accident and they did not know if he would life or die. He lived.

Yesterday, I saw a scissor-tailed flycatcher fly up to a power line alongside the road as I drove our boy to the emergency department. They are not common here, so that was a joy.

Yesterday, I heard a doctor say the words “abscess or tumor with some bleeding, 4-cm area at the top of his head...” Time seemed to slow down and just stop. I forgot to breathe. Was my heart still beating? I guess it was.

Yesterday, the EMT supervisor in the ER who explained the things our boy was supposed to do until we see the neurologist took our boy’s hand as we were leaving and said, “I will pray for you.”

Yesterday, while we were waiting in WalMart to pick up the drugs he was prescribed, I saw a lovely woman I had just met the day before at singing we had at church. She sang a beautiful song in her beautiful voice. She asked me how I was, and I started to tell her, and then began to cry. She put her arm around me and gave me a hug. “I will pray for you,” she said. And then a little while later, while we were still waiting for our medicine, she came and sat next to me on the pharmacy bench and she did pray for us.

Yesterday evening, just as I was getting ready to stop what I was doing on the computer, the cat leaped up to my computer area and knocked over my coffee, which spilled all over my keyboard.

Yesterday evening, as we were getting ready for bed, a beautiful, pale-green luna moth arrived at the storm door and began fluttering against the glass, trying to get to the light beyond. We closed the door so it would fly off and go about its short life.

Now I wonder what things I heard and saw yesterday will be forever in my mind as a reminder.