Hurt feelings

We’ve all had them at times; bumps in the emotions road that hurt. Most often they come from an offhand comment or an unthinking remark never meant to sting. But sometimes it can be hard to get them out of your system, to stop reacting. I think that may be especially true of people who’ve been through a transplant or any traumatic experience for that matter. You can get fairly tightly strung.

I have to admit to a couple of bumps myself. One I’m still reacting to everyday, the other I’m afraid I can’t do much about.

Every morning when I get dressed I check twice to make sure my belt is through every loop in my pants. That’s my way of dealing with something my daughter explained to me years ago when I missed a loop. “Dad, you look like an old man.” I’m not sure it assures me of eternal youth, but it dampens the hurt.

However, every time I think about something my wife said years ago – which is not very often -- I can only close my eyes and wince. We’d just come back from a lunch with a fraternity brother of mine who was obviously declining, losing a long battle with cancer and the bottle. Leaning against the kitchen counter, fooling with the wooden spoons in our Harriet’s Kitchen crock, I worried something under my breath about how thin Jerry looked.

From behind me, with a slight chuckle, obviously meaning to relieve my concern, Harriet said, “Well, you don’t have a butt anymore.”

My advice, once again, comes from Bernie who lives in the moment. And a thought for the day I sent to some other folks: Today is a gift. That’s why it’s called The Present.

The Long Goodbye

We’re spending time this weekend getting my mother situated in a long term care facility. It’s the best of several we spent time checking out and not far from our house so we can visit often. As many of you know, it’s a draining experience. You want the best for them in this time, and you hope you’re doing the right thing.

Harriet and I are home for a few hours now before we return late this afternoon. It gave me time to finish writing a poem I started some time ago.

The Long Goodbye

A mystery even Chandler’s Marlowe

Couldn’t solve

With no reason or rhyme

A crime of the mind

Someone taken from you

But still there

The soft silken hair

The same beautiful smile

But an empty stare

Sweet and Sour News

People involved in the transplant experience, whether pre or post, get used to having this unusual dish served to them; half with a spoonful of sugar on it, the other half with a lemon squeeze. Maybe you recognize one of these examples:

It’s definitely not pneumonia…but we don’t know what it is.

The EKG indicates that you have atrial fibrillation…but it’s not life-threatening.

Your oxygen saturation level has improved to 94%...but your blood pressure is 160/83.

You’re finally on the “list”…but it could be at least six months before you get the call.

You’ll never have to be on oxygen again…but you’ll have to be on these 15 meds the rest of your life.

You can go anywhere you want to go…as long as you wear a mask.

I got my serving of Sweet and Sour today. After my bronchoscopy at Shands, while I was still in Goofyland, Dr. Akindipe spoke with Harriet. He told her there was nothing to indicate any rejection…but they couldn’t be positive until they had the lab report on Monday.

On a completely positive note, with a helping of tail-waggin’ (it’s even sweeter than sugar) all over it, we got back in time for me to take Bernie on a walk down to the lake.

Another day, another lesson

This one has nothing to do with Bernie. Over the last few days, I’ve seen a rather dramatic downward slide in my FEV1 (Forced Expulsion Volume).That’s the measure of my lung function I take each morning.

Nothing else is awry. My temperature this morning was 96.9, blood pressure 111/65 and heart rate 59. As usual, Bernie (okay, he’s involved, but he’s never more than a pounce away) and I walked a mile before breakfast and I wasn’t winded at all.

Still, when the FEV1 drops, something’s up.

It could have to do with my recent late night stay in the hospital at my mother’s side. Or one of the other non-recommended activities this old blockhead tends to engage in without a mask; going out to lunch, grocery shopping, etc. Or a slowdown in the number of times I use Purell to sanitize my hands when I’m out or even at home. With my immune system compromised, I could have picked up a bug doing any of those things.

It could also have to do with a misunderstanding we’ve since corrected on the daily dosage of Prograf, one of the immunosuppressant medications I take. Or it could be just a rejection hiccup in the struggle of my body to throw out this intruder which most transplant recipients experience at least once in their post-op lives.

Whatever it is, we’ll soon know. Harriet and I are on are way to Shands early tomorrow morning where I’m going to have a bronchoscopy – that neat thing where they sick a camera down your throat into your lungs while you're asleep. When we find out what’s going on, so will you.

Oh, I almost forget to include the lesson. Never get too confident.

Take time for yourself

The weather here in Central Florida has changed dramatically. The high today was predicted at only 93 compared to yesterday’s 98. So, Bernie and I were able to get in a few more walks. On one of them this afternoon we came across a familiar scene. As we turned the corner and started down the road along the lake, we saw a teenage girl I’d guess at 15 or 16 years of age sitting on the hand made bench that someone long ago placed there. She was alone, reading a book.

Bernie wanted to say hello, but I gave him a quiet, “No.” He turned to look for something else of interest and we passed without interrupting the girl. The incident had me musing about something I recently read that someone as revered as the Dali Lama favored. Everyone, especially transplant recipients, should set aside some time to spend by themselves.

And then her cell phone rang.

Addendum to Children's Day

I’ve had a chance to re-think Children’s Day. Perhaps we should make this new holiday a weekend event; one day for the boys, and another for the young ladies. Heavens knows, they’re different. Mother Goose reminded us what they’re made of…snips and snails and puppy dog tails…and sugar and spice and everything nice. And as they grow, the differences grow with them.

As a father, I’ve been able roll with the boy’s punches, knowing they were coming. But the girls are another story. As this recent poem shows, I’m still trying to work it out.

Daughters and Fathers

He would do anything for her

But what she wants him to do

Is nothing

And he has to live with that

He has to keep his thoughts to himself

His eyes closed, his voice silent

Any action on hold

And pray for her to call

That’s what fathers do

When not to exercise

This morning, to take Bernie on his first walk, I slipped on a fresh T-shirt off the stack of laundry my wife did yesterday. When we came back, 20 minutes and three quarters of a mile later, Bernie’s tongue was lolling out the side of his mouth and the T was soaking wet. I tossed the shirt in the washing machine and cut another notch in my lesson stick.

It’s a good idea to read the paper or listen closely to the radio before you go wandering off on your exercise routine. The forecast high temperature in Central Florida today is 97 degrees. And with the predicted 65% humidity factored in, it will feel like 108 degrees.

Transplant recipient or not, I suggest you take the advice I gave Bernie borrowed from a Noel Coward song: Only mad dogs and Englishmen go out in the midday sun.

Children's Day

I suppose we don’t have an official one because, for most of us, every day is their day. But maybe we should think about it; a special day when we celebrate the incredible gift they give us with their lives. We could even make it a worldwide celebration. It might be a tough sell in some places, but maybe we could use this pitch: without them, Father’s Day wouldn’t be much. Well, I think it’s worth considering.

In the meantime, I’d like to offer up a few poems my children have inspired me to write.

The Lemonade Tree

Have you ever found a miracle

Growing in your backyard

I did yesterday

It seems my daughter planted it

Just by wishing hard

For a game to play

I know this sounds ridiculous

To adults like you and me

But for one moment

When she said, “Daddy look,

A Lemonade Tree!”

I thought I saw it

I thought I could feel the coolness

Of a leafy sweet shade

Hiding the sun

I thought I could taste

The sour of lemons

And the sugar of fun

Of course, you and I know better

There’s no way to grow

A Lemonade Tree

What I saw and felt and tasted

Was a child’s mind aglow,

The joy of being three

But still, there was a miracle

In my yard yesterday

No Lemonade Tree

But a miracle just the same

For a child at play

Touched the child in me

The Monster in the Hall

I’ll always remember that giggle

From the bedroom

When I played the monster,

Growling and gruffing

In the hall

And sometimes when I pass that way

I listen for a moment and remember

How to smile

Newberry Summers

Like faces in the misty light

Visitors from Rome

Come sailing home in arks

Full of Kermits and kangaroos,

Drawing dreams of bubble gum

And baseball in the sleep heads

We put to bed at night.

And, for a time,

The world is warm again

In the soft embrace

Of our Newberry Summers

Questions

Do you want to be a big girl?

No.

Don’t you want to be like mommy?

No.

Do you have to go potty?

No.

Won’t you even try?

No.

Are your pants wet?

No answer.

A lesson for Bernie

As usual, on our first walk this morning, Bernie and I went down to the lake. We stopped for a while and watched a foursome of early morning golfers teeing off on the first hole. While we were standing there, something big sploshed a few yards out in the water.

I pointed at it and said, “Look, Bernie, a bass!”

As you may know, the common belief is that if you point, a dog will look at your finger. Bernie is not a common dog. His eyes followed my finger to the spot on the lake that was still rippling. And at that moment a rather large, black Cormorant stuck its head up out of the water.

So, today both of us took something away from our walk. Bernie learned that a bass is a large black bird. I was once again reminded that things are not always as they first appear.

Another lesson learned

I had a chance to experience the gritty side of being a care giver on Wednesday evening. My 91 year-old mother has Alzheimer’s disease and lives with us. On Wednesday she had what’s sometimes called a Sundowner episode and ended up falling while trying to climb out a bedroom window. We called 911 and the paramedics took her to the hospital. At ten o’clock that night I insisted Harriet go home. From then until 2 a.m., I sat by my mother’s bed in the emergency ward, trying to keep her from pulling out her IV, to calm her down, to understand her mumbling.

As you can imagine, I went home exhausted when they finally got my mother admitted. But with an enhanced understanding of how much strength my wife has to have cared for me through all those bad years.

Simplifying complicated medical terms -- continued

I said this would be the really good part of this entry, and it will. But I have to confess something before we can get to it.

I wasn’t very clear in my previous mentions of Harriet’s medical problem for a reason. Despite a battery of echocardiograms, CT scans, ultrasounds, mammograms, and MRIs, no one was completely sure of the situation.

It started with a visit to the emergency room with pain in her back and chest. After a CT scan and an EKG, we were relieved to learn that her heart was fine. However, the radiologist had pointed his equipment a bit lower than normal and noticed something else; a spot on her kidney and another one on her liver. Since Harriet is a breast cancer survivor this instantly got everyone’s attention.

To shorten this story which included what seemed like a hundred tests, the spot on her liver turned out to be a simple hematoma – nothing more than a blood blister. However, the mass on her right kidney appeared to be a renal carcinoma…cancer. The only way to be certain was a biopsy. But the superb urologist I mentioned earlier on this subject recommended against it. Cutting into the tumor could cause it to spread.

Without hesitation, we agreed to his suggestion: remove the whole kidney.

So, now you’re up to date. Harriet had the surgery two weeks ago and is recovering remarkably well. On Monday we went to her urologist and he gave us the lab results. The mass on her right kidney was a multilocular renal cystic tumor with mixed epithelial and stromal cells. We started to feel a little better when he described it as…weird. Neither he nor any of his associates had ever seen this rare tumor. He explained a bit more. It’s sort of like an intestinal tumor, but not. And sort of like an ovarian tumor, but not.

Finally he simplified it all the way down so anyone could understand: not malignant.

Simplifying complicated medical terms

Let’s start with me. As I think I’ve mentioned, I was diagnosed with COPD in 1990. The doctor took pity on me when he saw the dumbfounded look on my face and explained: the acronym meant Chronic Obstructive Pulmonary Disease. When my look didn’t change he went on to nail it down. I had a combination of chronic bronchitis and emphysema. That at least gave me something to look up in the dictionary. Remember this was B.G – Before Google.

I discovered that chronic bronchitis is an inflammation of the mucous membrane of the bronchial tubes in the lungs. Emphysema is an abnormal increase in the size of the air sacs in the lungs, resulting in labored breathing and susceptibility to infection.

I also discovered that the great majority of COPD cases (80% to 90%) are the result of a prolonged habit of smoking. And I finally had a simplified definition of my disease that I could understand.

With a father who died of lung cancer at age 53, and a personal smoking habit that lasted nearly thirty years, peaking at three or more packs a day, I was a victim of Duh!

(To be continued in tomorrow’s blog – with the really good part!)

Quiet Sunday

We spent the day doing nothing. Harriet is still recuperating and lounged on the couch playing spider solitaire on her computer. Bernie and I took a couple of walks without really talking about anything, just enjoying being together. At lunch the two of us hopped in the Mustang convertible (he loves it with the top down) and picked up Wendy’s for everyone. While I’m writing this, I can hear an old western on one of the movie channels playing in the living room, where I suspect my mother and Harriet are snoozing. Tonight we’re having the clam chowder one of Harriet’s friends brought over on Friday.

It’s a great way to spend the day; at least once it a while.

Lucky 13

Today, it has been one year and a month since my bilateral lung transplant, and all is well. I know some recipients have problems within the first year; medication complications, infections, even rejection. But I've been lucky.

All I've had is a fever sore.

I had another attack today

Bernie and I were at the halfway point in our last walk of the afternoon. Across the lake, a foursome of golfers were teeing off, trying to squeeze in a round before it got too dark. A mama duck and her brood of five little ones were climbing up onto the grass under a willow as protective mama. The spraying fountain in the middle of the lake was shushing the day, ushering in evening. A towering cumulus shielded all but the longest rays of the sun as it climbed down the ladder into night. A lizard had Bernie’s attention, but he was firm in his Stay. I looked up and saw the contrail of a heavy on its way somewhere west and took a deep breath.

And the questions poured over me once again. Why me? Why am I alive and not someone else? Who am I now? Who gave me this new life? What am I to do with it?

Then Bernie broke his Stay and dove for the lizard. Thank God. On the walk back to the house, with his excited interest in everything we walked past a few minutes ago, Bernie reminded me that he lives in the moment, not worrying about the past or future. And how wise he is.

Lunch with Bernie

No, no. I don’t mean that Bernie. I’m talking about the man he’s named after. Bernie Bullard was a student of mine at Michigan State. Later, I hired him to work in the marketing department at Walt Disney World, and he went on to become one of the key executives at Tokyo Disneyland. In the process, what began as an instructor-student relationship turned into friendship. One of those “like it was just yesterday” things -- no matter how long it’s been since you’ve seen each other.

And it has been a long time. For two reasons: my illness-induced hermit’s existence and the fact that Bernie was half a world away.

Before my transplant I heard that Bernie had retired and returned to Orlando. Shortly after I got home from Shands, we actually had a chance to have a drink and a chat when he and another friend from the Disney days, Dave Pritchett, stopped by to make sure I was still alive. I’m fairly certain they were amazed by my post-transplant vigor. Not only was I not in bed or pasty white, I had two glasses of wine.

That short get together was nearly a year ago. So, you can understand why I was a bit nervous to – as my care giver suggested – reach out. But I’ve learned that she’s almost always right. And so I did.

Bernie answered my email within a couple of hours. Lunch was set for early the next week. And you saw this coming; when we met at Dexter’s our conversation picked up it like it was just yesterday when we last shared our lives. The lesson here of course is that your friends are not lost. You were. Now you just need to knock on the door, let them know you’re back.

I also learned another lesson at that lunch. It turned out that Bernie had a lot on his plate; three kids, a troublesome ex-wife, an upcoming marriage, a consulting job due. For good reasons, we’ve seen very little of each other since then. But that doesn’t mean his is the only door to knock on. There are others out there waiting to hear you’re back. Give them a shout.

Lost friends

This is another before and after entry.

One of the sad things that happen when your life gets put on hold by illness is that you lose your friends. Not because either of you stop caring, but because you shut down -- a cell phone with almost no bars, a clock with failing batteries. It becomes more and more difficult to go anywhere, do anything. They call, of course, and stop by to visit sometimes. But they’ve got a life to live. You understand that, and when the time between the calls and visits grows, you’re actually relieved because your condition embarrasses you.

As the weeks, and months, and years pass the connections fade until you’re essentially alone with your care giver. On the loving island she or he built for the two of you. And that is enough.

Then one day, quoting from a poem someone I know wrote, you find yourself “Waking up Dreaming” that the bad days are over. And they are.

It’s not until later that you grow lonely, and start thinking about friends, thinking that in this new life you don’t have any. It’s been years since you had lunch with anyone, even longer since you joined a group at a bar or party. You've kept in touch via email with a couple of people; one in Australia and another across the country in Los Angeles, but that old saw absence makes the heart grow fonder doesn't hold much water. And then someone smarter than you says... Try reaching out.

I’ll give you the result of that effort in the next blog entry. In the meantime, I hope you enjoy the poem I mention earlier.

Waking Up Dreaming

I used to dream

That someday I’d wake up

And still be dreaming

Doing something I could never do

Better than leaping

Tall buildings in a single bound

Or meeting E.T.

Or even winning the lottery

Then one day I went to Gainesville

To see the Wizard of Baz
Now every morning I’m

Waking up dreaming that same dream

That I can take a deep breath

And I can

Walking on water

On one of our afternoon walks today Bernie and I saw several ducks sitting in the grass at the lake’s edge. He wanted to go after them, but I told him they’d just fly or go out on the water – and he doesn’t do either.

He listened to the dog whisperer, of course. He almost always does. But the encounter reminded me of a good Bernie story. Soon after we got him at four months old, Harriet had him with her out in the pool area. We have a rather large pool; 20 X 40 feet. Bernie was investigating, walking around the edge of the pool, checking out the plants and lizards. At the first corner he came to, he stopped. He eyed the water, looked at the L-shaped decking and decided to take a shortcut – and walk across on the water.

Harriet helped him out, but he hasn’t been swimming since.

These days, it seems to me that more than a few folks in Washington have the same misconception Bernie did. And the rest of us are going to have to take Harriet’s job. Of course, we could just drain the pool.

Another thing to smile about

Summer has returned to Central Florida and with it the afternoon thunderstorms. It’s a chance to do something I haven’t been able to do in a very long time. I can’t sing like Gene Kelly, but I like walking in the rain.

 

As I said...

…something good happens everyday. Harriet’s surgery went well without any complications, and she is recovering nicely.

 

It's always the little things, isn't it?

You think you have everything under control, and then some little thing comes along and knocks you off your high chair. In my case it was a post card from our son Mark who’s the drummer in Malbec, an LA band that’s often described as Coldplay on steroids. They’re on tour now and the card was from New York.

It was addressed to my wife, Harriet. I read the card and was excited to learn how well the tour was going. Then I looked at the salutation again; in Mark’s unique hand it read, Mom…just Mom.

I stared at the card for what seemed a full minute, then sighed and laid it on the kitchen counter. As I was beginning to feel sorry for poor old forgotten dad, it suddenly dawned on me. That wasn’t the first postcard we’d gotten from Mark. The first one was from Indiana. That was the one where he apologized to Harriet for not sending her a Mother’s Day card and promised to make up for it with a bunch of postcards from the tour.

I chuckled and walked into the hallway where I could look myself in a mirror and repeat a mantra my daughter has taught me: It’s not all about you.

A real confidence builder

With a loved one facing surgery, no matter how serious or benign, you reach out for some reassurance that it will be a positive result. No problems.

Today, I got the best kind of boost to my somewhat shaky (I tend to hypochondria) confidence. I wrote a short note to the pulmonary doctor who helped me survive my COPD long enough to get a transplant. Because we’ve known each other a long time and have become friends, I thought he’d like to know about Harriet’s upcoming surgery. He wrote back asking the name of Harriet’s urologist. When I told him, his response completely erased my nervousness.

“He’s superb! She’s in good hands.”