Stuff We've Written

Embrace the Challenge!

2019-03-26T11:28:00.001-07:00

This is the third in my “rules for remaining positive when faced with medical challenges”.

And a note to let you know that I am NOT saying these are guidelines everyone should follow. These are what has worked for me. If you already follow one or more of these suggestions that I have been and will be talking about, great. Same if you think something I’ve said is right for you. But we are all different and what works for one doesn’t necessarily work for another.

You may find this week’s entry a weird one. It took me a while to realize that I was doing this. But here it is. When facing a medical challenge, embrace it. Embrace it not as a you would something you want or love, but as what it is, a challenge.

I first realized this about a month after my last kidney transplant. I was rushed to the hospital with what turned out to be a complete bowel obstruction. I was told I would be transported by ambulance to the University of Wisconsin, where I had just had my kidney transplant, because doing any abdominal surgery on me would be a challenge for anyone not familiar with “my plumbing”. After all, I was carrying around four kidneys and two pancreases with locations and connections far removed from what most surgeons were familiar with.

As I was laying on a bed waiting for the ambulance to arrive, I realized that my mind was preparing for a fight. This surgery, any surgery for me has a higher level of risk because of the anti-rejection drugs I take and because my body heals so slowly, leaving it open for infection. And I felt myself getting ready to fight and to win. I refused to let myself worry or be scared. I felt myself getting ready to tell family and friends not to worry because I would be fine. And I believed it 100%. I felt myself acknowledge that I would have pain but that pain would go away in time as long as I did what I needed to do.

Since then, I certainly don’t wish for bad things to happen to me. But when they do, I am happy to accept the challenge. Who’s going to win this time? I am. I will come out on top.

Since that bowel obstruction I’ve fought stage 3 colon cancer, an elbow broken in two places and my continuing vision degradation. I battled an infection that in most people shows up as a skin rash but for me it took up residence throughout my body and came closer to killing me than anything else. It was an infection so complete that I have to take a very strong anti-fungal medication for the rest of my life. And of course, that medication does not play nicely with my anti-rejection drugs so there is constant monitoring.

I will always have these challenges presented to me. Each time, I will accept it and fight it. If there’s any chance of me winning, I’ll do all I can to reach that outcome. I won’t wonder what’s going to happen to me. Instead, I’ll wonder what hurdles I’d soon be jumping over.

If you enjoyed reading this or any of my “rules”, please click here and make a donation toward my Tour de Cure Ride on June 2!

And thank you!

Rules for Remaining Positive Through Medical Challenges

2019-03-19T13:52:00.002-07:00

Last week I started with my first piece of advice for coping with difficult medical situations. What I said was don’t ask why it happened to you and don’t complain. There is always something worse.

This week my suggestion is to find something that makes you feel like a kid again. Not just to feel young, but to momentarily take you back to another time in your life.

Have you ever suddenly remembered the sights, sounds and even smells of a long passed time? It’s almost like a instance of deja vu.

For me, I’ve found that riding my bike can trigger these stored memories. Because I ride a

recumbent trike, I think it triggers this trip through time because I’m closer to the ground like I was when I was young and being low gives the illusion of speed, similar to when you were small and racing around on a bike.

What’s the benefit of this? It makes you feel good and puts a smile on your face. And anytime you’re smiling and feeling good, you’re beating any negative medical (or other) situations in your life.

You say you don’t want to ride a bike. No problem! But to feel this momentary time shift, you have to be doing something that strikes a chord and takes you back. Unfortunately, I can’t tell you what that action is for you. But think back to fun and happy memories from your childhood. What was it that you felt like you could do every day and not get tired of it because it just felt good? Try different things. Shake up those dusty memory files!

If you found this helpful, please consider a donation to my Tour de Cure ride for the American Diabetes Association. You can do so by clicking here.

My Rules of Life

2019-03-12T17:31:00.000-07:00

As most of you know, I’ve been dealing with diabetes for almost all of my 63 years. The first two thirds of that time being a Type 1 diabetic and from age 24 until now with the physical effects of it. This, even though I have been “cured” of diabetes through a pancreas transplant almost 22 years ago.

But rather than focusing on the negative effects of diabetes, I am going to talk about the positives – basically “life lessons” that have gotten me this far.

Between now and the Chicago Tour de Cure on June 2, once a week I will be posting a rule I’ve learned from and for coping with diabetes and the powerful transplant drugs I must take.. These are rules I must stick to. At this point, most of them come naturally to me. My hope is that you’ll find one or more helpful to you in dealing with the curveballs life can throw at you.

If one or more of them seem like something that would work for you in your life, I ask a favor. For each rule you agree with, make a donation toward my ride on June 2. Any amount is fine. If these rules are something that can help you, great! Just please make a donation so that others aren’t faced with learning them as I was, through very difficult circumstances.

I’ve been told by people that I have a great attitude. I’ve even been told that I’m an inspiration, something that honestly embarrasses me. My attitude and my success in making it this far are due to these lessons I have learned.

In no particular order, here’s my rule for week #1:

Don’t complain or ask “why me?” Don’t feel sorry for yourself. Why? It’s simple. There is ALWAYS something worse.

In the fall of 1978 I learned that due to diabetic retinopathy, nothing could be done to save the vision in my right eye. I sat down and started to cry. I thought this just was not fair. Why did this happen to me?

Just a couple of weeks later I was at Mayo Clinic for surgery on that eye in an effort to save some vision. I was in a pre-op area waiting to be brought into the operating room and I was lying on a gurney next to a guy around my age. Because I was feeling good from the injection they gave me to relax me a few minutes earlier, I struck up a conversation.

“How are you doing?” I asked this fellow patient.

“Okay I guess,” he said.

“Where are you from?”

“Near St. Louis,” he said while staring straight up at the ceiling.

“And what’re you here for?”

He turned his head to face me and said, “malignant brain tumor. I’m going to die soon, but they’re trying to give me a few more months.”

I was hit with two emotions. Feeling horrible for him and completely unable to find anything to say that would help or comfort him. But I also felt tremendous shame. I flashed back to that day I received my bad news about my eye and thought to myself, man, am I an asshole. I have NOTHING to complain about.

Since then I refused to allow myself to feel I had gotten an unfair break or life was unfair. When given bad news I immediately flashed back to that moment when I saw someone around my age telling me he was going to die soon.

Now, I know that regardless of what life throws at you, it could always be worse.

If you think this is a good idea for life, please make a donation by clicking here! And thank you!

Please, stop complaining

2015-01-25T21:35:00.001-08:00

by David Goldman

I don’t know what it is. Maybe it’s today’s society. Maybe it’s the abundant social media giving everyone the ability to broadcast to large numbers of people, or maybe something else, but there seems to be an awful lot of complaining going on these days. I see and hear it all around me almost every day.

“My back is killing me.”

“Oh, you have no idea how bad my head hurts.”

“Something’s not right with my stomach.”

“It’s too damned cold here.” Okay, that last one has been me on numerous occasions. Don’t get me wrong. I’m not saying that your back, head, or the sixth toe no one knows about on your left foot doesn't hurt. I’m not saying your pain, discomfort or sickness isn’t real. And I’m certainly not saying it wouldn’t be great if it was 74° and sunny every day of the year in Chicago. The thing is, while all of these are true, complaining about them does absolutely no good. Really! You can complain all you want about something and it’s not going to change that pain one bit. Not even one miniscule, teeny, weeny smidge. Look, it hasn’t changed anything yet, right? And I don’t know about you, but I for one, am sick and tired of hearing about it. Yes, I know that was a complaint. It’s a joke people! Get it?

Really though, I don’t know if it’s just today’s world, a generational thing, or if it’s always been like this, but it seems that you can’t talk to people without encountering someone complaining about something. Maybe it’s a function of age. Most of the people I interact with, whether in person, on the phone, or via social media, are approximately my age and our bodies are into the breaking down stage. But every time I hear or read a complaint I wonder what complaining is supposed to accomplish.

I know, I know. At this point you’re thinking, what an a$#hole! He’s complaining about complaining! Yeah, I am, but please read on.

On the other hand, I recently read a couple of Facebook posts that were in their way the polar opposite. One was from Lauren, a friend who recently had a kidney transplant. She posted that she had her scheduled checkup with her transplant doctor and everything was going great and just wanted to say how grateful she was. I don’t know Lauren very well, but this woman is a young mother of two boys and had spent almost two and a half years living off of a dialysis machine. Yet, during that time I don’t remember her ever posting anything that ever sounded like, “why me” or “this isn’t fair.” Most of her posts were pictures and updates of her kids and her family celebrations – happy, joyous moments and positive thoughts.

Another post was from another young mom. My friend Beth was diagnosed with stage 4 breast cancer about a year and a half ago. While she was never given a real prognosis, the situation was not good. It was too late for surgery and she underwent grueling chemotherapy and eventually, things started looking better. Then, they weren’t. So she’s going through chemo again now. Actually, she has been having chemotherapy treatments since this began. Her doctor told her she’d be undergoing some form of chemo for the rest of her life. Her post? She was just wondering what her friends’ favorite desserts were. She wasn’t asking people to pity her. She wasn’t looking for sympathy. She is always positive and was wondering what kind of fun dessert she and her family should have that night. And that’s typical of her. When she’s received bad news – devastating news, she might take a little time to absorb and process it, but then she continues living her life. I’ve asked her if she’s scared. She says she sometimes is. But being scared and complaining are two very different things and she knows complaining will do absolutely no good.

A lot of people who could learn some serious lessons from these two women.

This brings me to the point of all this. It’s a suggestion. Try to go a day without complaining. Just one day. Why? Because I honestly think it will make you feel better. Once you say it, type it, or somehow convey the complaint, it’s out there and it represents you. You might be fine with that and everyone around you might also be (although they probably aren’t). But going a day without complaining just might make you feel better. How do you know, you ask? Good question. Because I try to do it myself. It’s something I’ve tried to do for a long time.

In the summer of 1978 I was having eye surgery and I was feeling very sorry for myself. This surgery was a last ditch attempt to save a bit of vision in one of my eyes that over the last year had gone completely blind. The odds were I was going to lose that eye and about half the vision in the other eye. So, I complained about it. I felt it was unfair and it put me in a generally unhappy frame of mind. Just before I going in for the surgery I was talking to another patient who was probably about my age. I asked him what he was having done. He slowly turned his head, looked at me and said three words that truly changed my life:

“Malignant brain tumor.”

I was instantly ashamed of myself. Here was someone in his early 20s at most, fighting for survival. No matter how my surgery came out I knew I’d at least be alive. I also realized that was all that really mattered. From that point on I promised myself I would try never to complain, no matter what life threw at me.

Have I stuck to this vow from many years ago? I’ve tried. I’m far, very far, from perfect about it (or anything else. Just ask anyone who knows me.) But I’ve tried to stick to this one promise I made that day. And you know what? It has really helped me. I’ve had my fair share of medical drama and issues, but every time I’m confronted with a new one, or an old one rears its head, I think of that guy laying on the gurney next to me and I remember it can always be worse. Maybe I’m weird, but I find that comforting. So whatever it is that’s bothering you, that pain, that stomachache, that condition, remember, it can always be worse.

Try it for yourself. For just one day don’t complain. I bet you feel better.

And if you don’t believe me, ask Lauren or Beth.

2014-12-17T21:53:00.004-08:00

'Twas …

A thank-you poem (with apologies to Clement Clarke Moore)

by David Goldman

'Twas four years ago December, when given the news,

My transplanted kidney had blown its last fuse.

Judy’s kidney worked well for so many years.

But now it was dialysis, or a kidney from a peer.

Within a short time I could no longer pee,

I’d attach to a box that filtered poisons from me.

This process wasn’t awful, I’m not one to complain,

but thinking long term, a new kidney was my aim.

You can’t ask someone to fork over one of theirs,

Though it can be done, since they do come in pairs.

No, you just tell your story and explain your need,

then hope that someone does a really great deed.

I was touched and overwhelmed by the offers received,

but very few matches were actually gleaned.

Those that matched me could not be used.

Their owners were unfortunately, medically disapproved.

With my friend Roberta's help, whose name just won’t rhyme,

we made a short video, then put it online.

It was shown on TV by the nightly news anchors

and yielded an offer from one total stranger!

Again it turned out the match was incompatible,

but she offered to do something some thought was radical.

“What about a paired exchange? I’ll give to someone, and on down the line.”

Through this process I’m guaranteed one, in a short bit of time.

That’s how it happened, two and a half years from beginning.

I received a new kidney, it felt like a lottery winning!

From so many people the help and support came.

I’d like to take a moment, to thank them by name.

Thanks Debbie. Thanks Lenny. Thanks friends and my family.

Thanks Stuey. Thanks Lisa. Thanks Andy and all you who drove me.

Thanks both Patty and John, my donors. Yes two.

This swap was complex, another time I’ll explain it to you.

Thanks Nancy Radke. Thanks Dr. Nora and Dr. Jon Odorico.

Thanks to all the nurses and aides for the thankless deeds that you do.
Past the bumps in the road, you've safely steered me.
From the bottom of my heart, I thank you all dearly.

And whether it’s Christmas or Hanukah, or no special observance toward which you’re keen,

Happy holidays to you all, and a happy and healthy 2015!

The Kindness of Strangers

2014-10-25T00:00:00.000-07:00

by David Goldman

Last Sunday I went for a trike ride. I wanted to get video of the fall colors. Unfortunately, the colors on the trail I ride were all pretty subdued and bland, especially compared to some of the trees I see on the streets. Thus, there are only a couple of pictures here.

However, as it turned out, the ride became into something far different than a ride with nothing to show for it but disappointing video.

On each of my last four rides I had experienced a flat on the same wheel. I changed them, inspected them, got home, inspected them with a magnifying glass, ran my hand against the inside to feel for something sticking through, and could not figure out what was going on. I checked the rims, the spokes and everything else I could think of. Fortunately, when I brought the trike into the shop they figured it out and bolstered my ego because it was something I never would have found without the proper tools and equipment. Okay, and maybe a bit more knowledge of trike and bike mechanics.

Now that my flat problem was fixed I was all set to head out for a ride on my usual trail. The weather was okay – it was sunny and in the low 50s. I’d much prefer the 80s or 90s, but it was October so I’ll take what I can get. I was having a good time as always just rolling along the trail. Being somewhat paranoid though because of my recent spate of flats, I stopped every few miles just to double check and make sure I didn’t have a tire with a slow leak. Each time I stopped, all was well. When I got to the 10 mile mark, the underpass I needed to pass through was flooded due to the rains we had over the past few days. This made my decision to turn around and head home easy. I turned around and headed back.

I was about six miles from home when it happened. I suddenly felt a higher resistance to my pedaling and a slowdown. No, I told myself. It can’t be. A sinking feeling hit me as I applied the brakes and slowed to a stop. I reached over to check the left front tire, the one that had been giving me trouble. No problem! I checked the right front tire and it was also fine. Without looking, because I didn’t want to see, I reached around behind me to feel the rear tire. Flat as a pancake, as the saying goes. Dammit! I had ridden over 3,000 miles on this trike and probably as many or more on my previous bike without experiencing a flat. Now, I’ve had flats on five consecutive rides. To say I was angry, frustrated and possibly cursed, wouldn’t come close to all the thoughts going through my head.

Oh well, I thought to myself. I’ll change the tube, see if I can see what caused the problem, and be on my way home.

I found the puncture in the tube and the corresponding tiny, sharp rock sticking through the tire that had caused the problem. I checked for any more leaks or piercing and found none. All was well. Now, I just had to remove the old tube, put in the new one, pump it up, and get rolling again. And I must admit, I was feeling quite proud of myself!

I removed the entire tube from both sides around the valve and was about to pull it through when I

The culprit

remembered there was a small, nut holding the valve in place. No problem. These nuts are round and knurled and meant to be easily turned by hand. I started to turn it and … nothing. It was frozen solid. I tried several more times with no luck. I thought I needed a better grip so I put on a pair of thin rubber gloves I always carry in case I have to do something and I know my hands will get greasy. I thought the rubber of the gloves would give me the grip I needed. Nope. It would not budge. I needed a pliers and didn’t have one because it just isn’t something normally needed as a bike or trike tool. Yes, yes, I know. Until now.

But it was Sunday and there were plenty of people on the trail, walking, running and riding. Some overly prepared rider was bound to have a pliers with him or her.

As each rider passed I asked if they had a pliers with them.

“Nope, sorry.”

“A pliers? No.”

“No, I never carry pliers.”

A few people did stop and ask if I needed help but when they saw my predicament I saw a series of shrugged I-don’t-know-what-to-tell-you shoulders. One man did stop and say he didn’t have a pliers but he would try anyhow if it was okay. After trying unsuccessfully, he too said sorry and that he had to get back home. So here I was, about six miles from home and thinking I’d be taking that long walk while wheeling my trike behind me.

After about an hour of fighting with the locked nut and stopping helpless passersby, I was about ready to start hiking when a man rode up on his bike and in a mild Irish brogue asked, “Do you need some help?”

“If you have a pliers, the answer is yes,” I replied.

“Well, I don’t, but let’s see what’s going on.”

I explained and showed him my problem and he asked if he could try. My fingers were sore at this point from trying to turn the locked piece of metal so I gladly handed the wheel over to him. He tried but had no success either. As I took the wheel back and continued to try and solve the problem, we sat on a nearby bench and talked. He was here from Ireland for two weeks on business and staying at a nearby hotel. He told me he was thrilled when he found the trail located so close to the hotel, and as an avid cyclist back in Ireland, he was even happier to find a nearby bike shop that would rent him a bike for the two weeks he was here. We introduced ourselves, his name was Michael, and continued talking while taking turns trying to come up with a solution.

At one point when I was fumbling for a grip he noticed my hands were shaking. “Are you cold? Your hands are shaking.“ This with a mild look of concern on his face.

“No,” I responded. “It’s a side effect of a medication I’m taking.”

“Do you mind if I ask what medication? I do adverts and sometimes work with pharmaceutical companies.”

I told him what the drug was. It was one of my anti-rejection drugs and I was just put on a higher dosage of it because of a rejection episode with a transplanted organ. He knew the drug and immediately said it by it’s brand name rather than the generic name I had used.

With that he said, “You shouldn’t be doing this. Give that wheel to me, and practically snatched it away from me. He stood up, braced himself for leverage, and forced the nut free!

“Oh man, thank you SO much!” almost shouting.

As I took out the old tube and replaced it, we continued to talk. Mostly about cycling and the trail we were on. He had ridden close to 60 miles that day and said he was going to figure out a way to ride it every day he was here.

I pumped up the tire to its correct pressure and went to remove the pump’s nozzle from the valve. Don't you know it, it was stuck like glue to the valve. I made sure the nozzle was in the unlocked position and tried again. It wouldn’t budge. I tried moving the lock/unlock lever to what I thought was the locked position with the same result.

“Don’t tell me it’s stuck,” Michael said.

With a forced chuckle I said, “You got it.”

We both tried twisting it, gently pulling it, and pulling it with more force. It just was not my day.

After several minutes of both of us doing this Michael asked if I minded if he just gave it a good yank. I told him to be go ahead.

He did, and the entire valve ripped out of the tube, instantly deflating my only spare and rendering it useless. The valve was still stuck in the pump’s nozzle and now of course, easily twisted out.

“I don’t suppose you have another spare do ya?” Michael sheepishly asked.

“No, and don’t feel bad,” I told him. “I would have done the same thing pretty soon anyhow.”

Now I was really left with only one option. I told him I was going to start walking home. Without hesitation he said, “No, here’s what we’re going to do. I’m going to ride back to the hotel, get my car and meet you up at the next street. Do you know how far we are from it? Can you walk there?”

I told him it was about a mile and a half but reminded him he didn’t know where I lived. “For all you know I could live 40 miles from here," I told him.

With a smile he said, “So? It will be an adventure for me!”

I asked and asked again if he was sure he wanted to do this and he assured me it was fine as he had

nothing else to do. He asked me for directions from his hotel to where we were to meet. I gave him the directions and he repeated them back to me. He headed off while telling me he would be there and if he arrived before me, he’d wait. I told him once again he really didn’t have to do this. I could walk. In truth I certainly didn’t want to endeavor on a walk that long while holding the rear wheel of the trike up in the air behind me and wheeling it along. He insisted on doing this and I thanked him and told him I’d see him at the street. With that, he was gone.

I put the wheel back on the trike, put my various blown tubes, gloves, tire levers and pump back where they all belonged and started walking, trike in tow.

The walk wasn’t bad although it certainly would have been easier had I not been schlepping my trike

behind me. I walked along and people coming toward me stared at me as I wound my way south on the trail.

It didn’t take too long until I got to the street. There, I removed the seat from the trike and folded the trike (yes, it folds) for easier transport and began to wonder how long I’d have to wait.

Did I give him the right directions? I reviewed them in my head and was pretty sure I had. Besides, he repeated them back to me and they were correct. I think.

How long do I wait? I guess until I feel certain he isn’t coming.

These questions and others buzzed through my head as I stood there watching traffic go by.

Gladly, I didn’t have to wait long. Within three minutes at most, he pulled up and over. I walked to the car and he popped open the trunk. Looking at it, we both knew immediately that even folded, the trike wasn’t going to fit. “We’ll put it in the back seat he said.”

“Okay, but we have to be careful not to get grease on the seat of a rental car,” I reminded him.

I turned and headed back toward the folded trike but Michael sprinted ahead of me.

“Please,” I implored him, “let me carry it or at least we’ll carry it together!” I shouted after him.

He got there first and started to pick it up and realized that at least for this task, two of us would be a much better idea. We carried it over to the open rear passenger door, turned, twisted and cajoled it to get it partially in. I said I’d go around to the other side to lift it and pull it in from that side while he guided it.

“No need,” he said as I was opening the other rear door. And with that he gave it a shove just in time for me to see a large smudge of grease being generously applied to the back seat.

“That was why I wanted to lift it,” I said.

“No matter, it’s in. That’s the important thing.”

“They’re going to charge you for it,” I reminded him.

“The company will pay. It will be fine,” was his instant response.

“Are you sure? Won’t they be mad?”

“No, it’s my company.”

With that I got in the car and gave him directions toward my house. Driving down the straight road and moving at about 45 mph most of the way made it a quick ride as opposed to the zigzag path of the trail while moving at 10 mph. We were at my garage in under 10 minutes. We got out, and this time he allowed me to help him get the trike out and set it on the ground. I got out my garage door opener and wheeled the trike inside.

As I turned to say goodbye and thank him it occurred to me that I had no idea how to thank him, which was exactly what I told him. “Can I offer you money? Something to eat or drink? I don’t know how to thank you for this. It’s not often that a complete stranger would do something like this.”

“You don’t owe me anything. Hopefully if I’m ever in a rough spot, someone will help me out. That’s how I look at it” We shook hands and he got back in his now grease stained car and was gone.

I thought about what he had just said, that if he’s in a rough spot, one day someone would help him out. I smiled to myself because I realized that was almost exactly what I would say if the roles were reversed.

A moment later I laughed as it dawned on me that maybe our mutual thought process had just worked out for me.

Why I Ride

2014-08-13T09:53:00.000-07:00

by David Goldman

The doctors said if I felt up to riding, I could ride. They even said it would be beneficial. So, after being disconnected from my chemo pump last Wednesday after my first two-day treatment, the first thing I did was head out for a ride.

A little background: I go in for my treatment on Mondays and get one drug infused into me for a while at the hospital before going home with a pump attached to my port and a second drug cocktail slowly dispensed over about 46 hours. On Wednesday, a home healthcare nurse comes and disconnects me and I am free to do as I wish. Of course, this is within any physical limitations I might be feeling as a result of the chemo.

The first treatment went smoothly and as I was getting disconnected from my pump on Wednesday, I was feeling good, and the urge hit me. It is the urge I get so often when the weather is nice. Go take a trike ride. I double-checked with the nurse to make sure it was okay. She said if I felt like it, I could. So I did!

While I was riding I started wondering about just what it was that I enjoyed so much about riding. What was that pull that so often took hold of me, especially on warm sunny days? Why am I struck with this need to pedal myself from here to there and back again? I ride a trike with two wheels in front and one in back. These are referred to as tadpole trikes or recumbent trikes. I know part of the appeal for me is that it’s just fun to ride these things. But that’s not the whole reason.

It’s not speed. I don’t ride very fast. Twenty years ago I was always riding to try and improve. Improve what? My average speed! That’s what most bike riders are constantly trying to improve through interval training, power output measurements, VO₂ max capacity, and a host of other methods. If you don’t recognize these terms, it’s probably good. Non-comprehension of them means you’re not a cyclist looking to gain more speed. I used to do these things looking to gain a quarter mile per hour of speed, but I don’t anymore. I’m content just pedaling along at whatever pace my legs are moving on that particular day. That said, I do enjoy the speed of the descents. Here around Chicago, things are pretty flat and zooming down a long twisting or straight road or path at warp speed is pretty much out of the question. But there are some spots where I can get up to 30 or even 35 mph, which for me, is fast! And because I’m on a trike I feel and indeed am, very stable. This means taking a spill at high speed isn’t really a concern. But those faster speeds are infrequent and short-lived when they do occur. Again, my 10-14 mph speeds suit me just fine.

It’s also not discovering new places to ride, although I do enjoy doing this as well. Because I don’t drive, almost all of my rides begin and end at my home so I’m confined within whatever confines time and distance place upon me. As a matter of fact, I do almost all of my riding in one place, the Des Plaines River Trail. It’s a multi-use path that runs along the Des Plaines River in northern Illinois for approximately 31 miles, stretching from the southern border of Lake county up to the Wisconsin state line. It’s a crushed limestone path and being multi-use means it’s open to cyclists, walkers and runners, equestrians, and in the winter, cross-country skiers. This is my preferred spot to ride for a couple of overwhelming reasons. For one, it’s easily reached from my house. It’s less than a mile away and almost all of that route allows me to ride on a very wide sidewalk that is almost always completely devoid of pedestrians. The other section is along an approximately 500 foot stretch of street that I have literally seen cars on twice in the past year. In that year I’ve gone for 146 rides on my trike and at least 120 of them have been on the DPRT.

And like wanting to ride faster, riding in different locations is great. But because of the limitations of where I can go, I’m fine spending the majority of my time on this trail. It’s like being a kid and exploring the neighborhood. I used to know every square foot of my neighborhood. Every street, alley, and shortcut from here to there in my neighborhood were as familiar as the back of my hand. But even so, during my years as a kid it seemed I was always discovering something new – a way to cut across the train tracks at a certain spot in order to get to the drug store where I’d buy my comics. Or discovering an alley that curved differently than the street that it ran somewhat parallel to. This enabled me to get to the record shop about 27 seconds faster than my friends who were walking at the same speed as me but were unfamiliar with the way the alley curved and thus missing this “secret” shortcut. Whether you were just going to a friend’s house, playing a hide-and-seek type game on a several square block area, or looking for a new place to catch grasshoppers and other insects, there was always something new to be found in the old neighborhood and that’s just how I feel about the DPRT. I always see something new and different that had gone unnoticed in all my other rides.

But I think that’s just it. That’s what attracts me. This explains what I enjoy so much about riding. It is why on these beautiful summer days that urge hits and I have to get out for a ride, and it’s why in the brutal winter months I daydream about the summer finally arriving and getting out on the trike. It is why while riding, I sometimes realize I must look like a fool, because I can tell I’m riding with a grin on my face for no apparent reason.

It is because it makes me feel like a kid again. It’s that plain and simple.

It’s the freedom that comes with not worrying about or barely thinking about life’s day-to-day challenges. It’s not that I want to escape my life. I’m quite happy! Actually, it’s quite the contrary. I want to do what I can to enhance my life as much as I can, and I think opening the vents of my mind and letting the wind rush through for a while refreshes me. For just those two or three hours, there are no concerns about work, financial matters, or difficult pending decisions. My mind stops running through HTML code and CSS variations. I don’t think about needing to replace carpeting, fighting with the health insurance company, or a million other questions, thoughts or scenarios. No, those concerns all temporarily disappear and are replaced by a free-flowing stream of consciousness. The environment triggers a thought based on a sight, a smell, or a sound and I’m instantly transported to another place in time. Most often it’s my childhood. Everything is sharp and vivid. My mind’s eye once again sees with two good eyes instead of one fair one. Faces and voices are all as they were all those years ago. Perhaps my brain idealizes some of it because the sun always seems to be shining and the weather is perfect. Even if there’s snow in my thought bubble, it doesn’t feel cold.

While riding, I pick up the smell of burning wood off in the distance and suddenly it’s an October Sunday. I’m trying to get the leaves raked up and put in a pile in the street next to the curb so they can be burned before the football game begins. Others on the block are doing the same and the smell of burning leaves is pleasant and pungent. Cappy, the neighbor’s dog, wanders over to lift his leg and anoint the pile of leaves I’m constructing. Our front lawn is small: probably no more than 300 square feet if even that much, but when you’re 10 years old it looks to be about the size of the football field you can’t wait to go see on the TV. And every leaf has to be cleared off of it. Of course, we happen to have the biggest, oldest tree on the block which means its branches shed an inordinate amount of leaves.

My thoughts of Sundays, burning leaves and football are suddenly interrupted as I approach the only, albeit short break in the trail. For about 1500 feet I have a choice of either riding on a very busy four lane road or on a dirt and grass path just a couple feet beyond the right lane marker. Being on a wide trike and the vision of a hawk not being one of my assets, I always opt for the latter. Riding along next to this traffic often brings me back to one of my first bike rides on a busy road.

It was the summer of 1967 and I’m 11 years old. Two of my friends and I decide we’re going to ride our bikes to the JCC, a boys and girls club of sorts, to go swimming. We are each wearing our swimming trunks, a tee shirt, and flip-lops on our feet. We each have our heavy, rusted bike chains wrapped around our waists and secured with a padlock an armor piercing bullet couldn’t dent. We double and triple check to make sure we each have the padlock key in a pocket. We’re all set for our two-mile ride. Back then, our bikes were our main source of transportation so the distance wasn’t intimidating. But the busy, shoulderless road was. Where we were going required us to ride a little over a mile on that stretch of road, sharing it with cars that all had V8s and heavy chrome bumpers. None of us tell our parents where we’re going because we know they would instantly stop us. As we approach the turn to get on the road we are all scared, but being 11 and 12 years old, we certainly can’t let on to each other that we are.

As it turned out, the ride wasn’t bad. It was a weekday and traffic was light. As we start riding we gain confidence. We don’t weave. We don’t take chances. We get there quickly and without incident. We lock our bikes and head inside. When we get in we can hear music playing – music that we know from the radio. We all recognize it at once. It’s I Got Rhythm, the George Gershwin classic that is currently enjoying a rebirth as a pop hit by a band called The Happenings. We listen for the source of the music and soon realize it’s coming from beyond a pair of closed doors that lead into the small auditorium. It sounds like it’s being played live and the singer sounds like the singer from The Happenings! We approach the doors and see a sign saying The Happenings are playing there tonight in a concert. We’re here and they’re in there practicing! We’re all really excited that we might get a chance to see this band play. But just then, a worker walks up and tells us not to go in. We tell the him okay, walk around the corner toward the pool, and carefully look back until he is gone and the coast is clear. Quickly we head back for the door. We slowly open it and peek inside. There, on the stage is the band practicing the song we’d been hearing on the radio the whole summer! Swimming was forgotten. It was my first taste of live, popular music and I loved it. It was the first of hundreds of live concerts I’d get to see. We all sit down in the back in a dark section as the band practiced. I am transfixed.

Unfortunately, the excitement is very short-lived and quickly ends. Within two or three minutes at the most, the door we had snuck through opens and in walks the same man who just moments ago had told us not to go in. He hoists each of us up by our shoulders and unceremoniously shoves us out the door of the auditorium and then the main door. He gives us a firm warning that makes it clear we would not be welcomed back. But that was okay. Those few moments have given me a memory that has lasted 47 years and will undoubtedly last until the end of my days. Not only did I get to see live music, but I learned that my bike could take me places I had once thought unreachable on my own.

Back again on the DPRT in 2014 I start wondering if that day had the same effect on my two friends as it did on me. One of them died when he was very young and the other moved away a long time ago. I haven’t spoken to him since high school. Did the boy who died also remember that day for his entire, short life? Does the one who moved away ever think about that day?

As I continue rolling along my thoughts linger for a moment on the friend who had died and the others in my life who are gone. Inevitably, I think about Krissy, my pancreas donor whose life ended in an instant when she was just 17. This leads to an area of thought that I know will not provide me with any answers, definitions or truisms. As I ride through these old forests and prairies I wonder what happens next. Does anything happen next? Is Christianity right and we either go to heaven or hell? Maybe the Hindus have it right and we are constantly being reborn in a cycle. Or, do the Jews have it right: you die. It’s over. End of story. Maybe it’s a combination of these and/or others. Maybe it’s not. Personally, I like Albert Brooks’ point of view in the movie Defending Your Life. In short, after you die you wake up in what ranges from a cheap motel to a five star luxury hotel and for the next few days you must appear before a small panel that has been assigned to you. They’ll show you video clips of your life and you explain what you did and why. While you’re visiting for those few days, you can enjoy all-you-can-eat, delicious, zero-calorie food that’s served 24/7 at no charge. After your hearing the panel decides whether you are worthy to move on to “the great beyond” to enjoy eternity or to be sent back to start a new life and try again. Seems reasonable to me!

But that, in a nutshell is why I love to ride. For me, it’s therapeutic, refreshing, and invigorating. It lets me clear out bad thoughts and fill them in with more pleasant possibilities. It helps me put things in perspective. And riding helps me retain pleasant past memories. Yes, yes, quite possibly with some unintended enhancements, but hey, they’re my memories. So even on some days when I might not be feeling 100%, I know that once I start riding I’ll soon feel much better.

There are days I go for a ride specifically to make myself feel better and it always works. I always finish a ride feeling better than when I started. And on a warm, sunny summer day, it’s pretty hard for me to find a reason not to go for a spin.

Random thoughts during my first chemo session

2014-08-04T13:52:00.003-07:00

by David Goldman

This time, I will not let a disease define me.

I am a husband.

I am a father.

I am a friend.

I am a web developer, computer geek, and a dog lover.

I love music, sports, reading and riding my trike.

These are what define me.

I did allow myself to be defined as a diabetic.

I was young and did not possess the capabilities to combat it from happening.

Now, I am older, wiser and more capable.

I've had surgery and when I am done with chemo, I will not consider myself a cancer survivor.

To me, a survivor sounds like someone who is less coming out than they were going in.

When I am done with this I will not be a survivor,

but I will be whole and complete: the same as I was before cancer.

I believe what doesn’t kill you does make you stronger

I will be stronger, wiser, and more appreciative.

I will be alive and I will still be a husband, father and everything I was before.

And if I’m lucky, a bit more.

Here We Go Again

2011-09-22T13:43:00.000-07:00

by David Goldman

It’s been a couple of bad luck weeks for me when it comes to finding a kidney donor. Two weeks ago my best match was told she couldn’t donate because of her own medical issues, and this week the same thing happened with my other best match. Hopefully, both of them will get things resolved and they’ll quickly return to good health. In the meantime, I’m back at square one in my search for a donor.

If you’re new to this subject, here are a few facts about kidney failure and living vs. cadaver kidney donation:

· When you have kidney failure, you have two choices: dialysis or a kidney transplant.
· A kidney transplant doubles the life expectancy of a patient versus being on dialysis. The lifespan of a 40-45 year old male on dialysis is approximately 8 years.
· The wait list time for a kidney averages between five and six years.
· Short and long term survival rates are significantly better for transplants from living donors than transplants from deceased donors. (On average, approximately 18 years for a kidney from a living donor compared to 13 years for a kidney from a deceased donor).
· Surgery for living donors is minimally invasive and almost always done through a laparoscopic procedure.
· Much more information about living kidney donation can be found at the Living Kidney Donors Network (www.lkdn.org).

Wednesday, I spoke with one of my transplant coordinators who told me a few people have asked to send in blood samples to see if they’re compatible matches and this is a very good thing. She also told me to get the word out again to see if there’s anyone else willing to donate and that’s what this post is about. They say you can’t just ask people to donate. It puts people in a very awkward position with no graceful way to exit. You’re supposed to just tell them your story and hope that they offer to donate. The good thing about a blog is, you can come right out and ask but nobody’s put in that uncomfortable position. Another one of the wonders of the Internet!

My story is pretty simple. I was diagnosed with Type 1 (or juvenile) diabetes when I was a year and a half old. I led a very normal life with a few diabetes related bumps in the road. When I was 27 I found out I had diabetic nephropathy (diabetic kidney disease). At that time, kidney transplants were no longer experimental, but they were a lot more rare than they are today. I was very lucky. My sister wanted to donate and when I was 30, I received a successful kidney transplant from her. That kidney worked perfectly for almost 25 years when it eventually failed. I went on dialysis this past December. Since then I’ve been hopeful of another transplant.

Getting back to asking or not asking someone to donate. This post is clearly asking anyone who is interested to consider donating. If so, please call the University of Minnesota Transplant Center. This is where I had my first transplant as well as my pancreas transplant. Their number is 1-800-328-5465-Option 1. All of your information is kept confidential. They will not use your name or divulge any of your personal or medical information to me.

And, I thank you!

Round Two

2011-09-12T07:59:00.001-07:00

by David Goldman

I’ve been on dialysis a little over nine months now. This whole time I had the transplant carrot dangling in front of me and that’s been a good thing. It kept me moving forward. Being “sick” is a lot easier to deal with when you see the opportunity to be cured. Even though a transplant is really more of a trade off, it’s still better than being on dialysis.

Several people had volunteered to donate and out of those a few were good blood matches. I had to clear a few medical hurdles in order to be okayed for surgery. That took longer than I thought. I was anticipating a few weeks but it turned out to be a few months. Then, the candidate whose blood best matched mine on several critical parameters had to go through a battery of medical tests as well. That’s where things really seemed to slow down.

Without going into detail, my friend had to have a couple blood tests done, wait a few months, and repeat them. Whether or not she could donate would be determined based on those results. Both of us have anxiously waited for that time to pass. Finally, last week the day came and the test was done. Of course, it was immediately before the holiday weekend so we had to both wait nervously even longer for the results. Yesterday they came in and they said no transplant from this candidate.

Here’s the funny thing: I feel strangely relieved. It’s not that I was nervous about surgery or anything like that. It was just the waiting. I really detest the waiting. Hearing no certainly wasn’t as good as hearing yes, but putting an end to this chapter really does feel like a weight off my shoulders. Not that this whole thing is over, but at least there’s a course of action to be taken which is better than waiting for time to pass. My transplant center will select the next best possible donor and he or she will go through the same series of medical tests. Maybe there will be hitches again or, maybe not. At least having an answer and a course of action feels good to me.

It’s having that goalpost in front of me that keeps me moving forward. If the next step is within view and attainable, it makes scheduling my life around dialysis, its restrictions, and all the problems of kidney failure, tolerable. I can still see a light at the end of the tunnel, and after all, I think that’s what it comes down to. As long as I can see a possible solution to this problem, I can make peace with it. Although I’d like to think that if all the transplant opportunities were to go away, I’d still be able to find something that would keep me in a positive mindset.

I know my friend never expected it to turn out this way. And I know she hates that it did. But she shouldn’t and I hope she knows that. What she did by offering to donate a kidney to me was in and of itself an extraordinary gift. As soon as she knew my situation, she came forward and that is not an easy thing to do. I didn’t tell her of my situation in person, but with the people that I did tell face to face, I could immediately see in their eyes if they were going to volunteer or not. For those that didn’t, their eyes showed me the indecision, the fear, or hesitancy that was going through their minds. I KNOW they all wanted to donate but for a variety of completely valid reasons, they couldn’t. But for this friend and the others that said yes, and for my sister who donated to me the first time, the look in their eyes said everything, and I can never thank them enough.

The Eyes Have it

2011-08-31T08:42:00.000-07:00

by David Goldman

I think it’s time to go back to the eye doctor. Every straight line I look at doesn’t look straight. It has a dent, like this:

Irritating to say the least.

I’ve mentioned my vision problems before. I used to have great vision. I suppose most people can make the same claim.

My ocular dysfunction started at the beginning of my senior year in college. I was still licking my wounds after being dumped like a bag of week-old garbage by my longtime girlfriend. It came as a shock to me. It especially shocked me when I found out I was being replaced by a grad student who studied fish. That’s right, an ichthyologist. You know the type. Apparently, based on what she told me in the 14-second phone call, I wasn’t fulfilling her intellectual needs and she needed someone with greater mental abilities.

So, to try and move on with my social life I took a job doing cooking and checking IDs at a new bar that had opened on campus. An odd pairing of job functions, but it worked. I got to eat for free the nights I worked and being the doorman gave me the opportunity to meet lots of new and interesting people (read: girls).

Things were going along smoothly, but one night I noticed I couldn’t see very well out of my left eye. I had “floaters” in my field of vision. I later found out these were little droplets of blood. I went to the eye doctor and he told me I had diabetic retinopathy – a problem diabetics sometimes develop in which new, brittle blood vessels start growing on the retina and then rupture, hemorrhaging blood when the body’s blood pressure rises through exertion or from other stimuli. Within a couple of weeks I had the problem in both eyes.

The doctor I was seeing in my college town seemed like he was up on all the latest procedures and scientific advances in the field. I think it’s a requirement for being a doctor in a college town. He told me I needed to have a new laser treatment done on my eyes. This was 1977 and still a time when I heard laser, I thought of James Bond strapped to a gold table with a laser slowly moving toward the Bond family jewels. This, as Aurich Goldfinger is telling Bond he doesn’t expect him to talk. He expects him to die. Lasers beaming into my eye still had that futuristic, experimental, and yet, obscenely painful connotation to me. Call me juvenile.

But I was assured it wasn’t too bad and the local college doc gave me a referral for a couple of doctors back in Chicago. Coincidentally, a friend of mine’s dad was a diabetic and he had just had the same problem and the same procedure with great results, so home I went.

The retina specialist examined me and concurred with the previous diagnosis and treatment. He told me I would need three or four of these laser treatments. He explained that what the laser does is burn away those newly forming blood vessels forcing the blood to flow through the older, stronger, rupture-resistant ones. Seemed to make sense to me. The doctor was a short lil’ fellow with a Napoleon complex, but he was supposed to be very good at this procedure.

The first session wasn’t too bad. The worst part of it was probably the clamp used to hold my eye open for what seemed like decades at a time. The laser treatment was relatively painless. I went home after the first session with a dull headache and a patch over my eye. I was told I could remove the patch after 24 hours.

The next afternoon I eyed the clock (so to speak) all day until the unveiling time arrived. I removed the patch, opened my eye and immediately shouted, “Shit!!” It was like looking through a cardboard paper towel roll. I had no peripheral vision on the left and limited peripheral vision on the right. I called the doctor’s office and because it was Saturday, had to wait for someone to call back. The doctor on call phoned me shortly and I told him what I was seeing. Or not seeing. I could hear him rustling papers, most likely my file. He finally said that considering where my problem was located, a significant portion of my retina had to be burned away to prevent bleeding, and that portion would affect both my left and right peripheral vision. I asked him if they, meaning the doctor who wielded the laser, knew this beforehand and he said, “Oh yes, didn’t he tell you?” A plethora of smart-ass replies jumped into my mind but I withheld them. I told him I didn’t have any idea this was going to happen. He said if this wasn’t done, I’d end up being completely blind.

I was actually able to accept that fact rather easily – the lesser of two evils and all that. But, as I’ve mentioned before, I just would have liked to have known this before I took the patch off and half my vision was gone. Now you can call me juvenile and difficult.

I had three more treatments on that eye with no more significant loss of vision.

That is, if I don’t count portions right in the middle of my sightline.

The right eye was a little more difficult. Because the problem on that retina was occurring near the optic nerve, they couldn’t do the laser treatment. Instead, they were going to do cryo-surgery. Something else that sounded like it came from a James Bond movie. This time they were going to slice my eye open, remove the contents and with frozen gas, burn the offending areas of the retina. Then they put the pieces back in with some new, manmade eye-jelly and things should be okey-dokey. It sounded almost pleasant if it wasn’t being done to ME! Oh yeah, I also had to be awake for this one.

A couple weeks later I find myself lying face up on an operating table. Head locked in place by some vice-like contraption, straps to hold my hands down, and another one of those damned clamps holding my eye open. Did you ever see the movie A Clockwork Orange? They use those same clamps to hold open the eyes of the main character while they try to rehabilitate him. They’re really quite unpleasant.

As the procedure begins I see a scalpel coming down toward my eye. I quickly realize the straps are on my hands to keep me from defending myself. It’s not easy watching a highly-sharpened blade come down, touch, and then cut your eye. To be honest, it doesn’t hurt. It’s just the thought of it. Apparently, I was thinking about it too much because a few minutes later I started feeling nauseous. I made the pronouncement that I thought I was going to vomit to a synchronized chorus of “NO!!!” It seems if I did puke, they would have to let me turn my head, and if I did turn my head and toss my cookies, the few contents of my right eye that were still in place would go sailing across the operating room. Instead, they gave me oxygen, which calmed my stomach and they completed the operation.

Unfortunately, the results weren’t too good. The surgery was done on the Friday of Memorial Day Weekend, 1979 and Dr. Hobbit, was taking a long weekend off. He told me to keep the patch on until I came into his office Tuesday.

Tuesday came and as he was about to remove the patch I asked, “Will I lose any peripheral vision this time?” He assured me I wouldn’t. The patch came off and I could see – nothing. Couldn’t see a damned thing. Blackness, and more blackness. Without examining my eye he told me to give it a couple of days. I suggested he look in my eye to see if something was wrong. He assured me he didn’t have to. Uh-huh. It was no better the next day or the day after that. By Friday I insisted that he take a look and he did. His examination found the retina had come completely detached and it was too late to do anything about it.

The fact was, I could accept all of this. A little vision was much better than no vision, which is where I would have been had this all happened to me 10 years earlier. It was just the attitude of the doctor that got to me. I could go on much longer about him but I won’t. Suffice it to say he’s still in practice in the Chicago area.

My ex-girlfriend actually showed up later that day. I was sitting on the front porch, admittedly feeling a bit sorry for myself when she pulled up. By now I was well over her but I was intrigued by why she was coming by. She told me she wanted me to come to her wedding. When I stopped laughing I told her in no uncertain terms that I did not wish to partake in the nuptials. She told me I was immature and stormed away.

Perhaps I was. But it was at that moment that I smiled because I knew how lucky I was just to be able to see her driving away.

Hurricane Irene Report

2011-08-27T16:33:00.000-07:00

Thought I'd give you my first hand report of how things look during Hurricane Irene.

The Waiting IS the Hardest Part

2011-08-19T08:34:00.000-07:00

by David Goldman

Back in December when I first found out my transplanted kidney had failed, one of the first things I did was let all of my friends and family know what was going on. I told them that I was starting dialysis and the only “cure” was another kidney transplant. The number of people who said they wanted to donate overwhelmed me. At times, I was left almost speechless. Organ donation is clearly one of the most selfless things a person can do, but it’s not like donating old clothes to charity. It’s real, knocked-out cold surgery that always carries risks. But about half a dozen people volunteered to donate and took the steps to follow through. Out of those people, my transplant center tested for the best available match through a process of blood and physical testing.

Once the best match was selected, she had to go through medical testing to make sure she was a good surgical candidate and of course, to make sure her kidneys were working properly. There was one little hitch in her workup that meant she had to wait three months and have the test redone. That was at the end of May, so she’ll be getting tested sometime at the end of August or beginning of September. If that test is normal, they’ll schedule the surgery.

I’ve been doing really fine on dialysis. It’s certainly a pain in the butt (figuratively, not literally), but I feel pretty good, which is a lot more than many dialysis patients can say. But I’ve got to admit, I’m really wishing we could get this thing done.

It’s not so much that things are bad the way they are now. Giving up a few hours, three days a week isn’t ideal but it isn’t horrible. I have to be on a diet that pretty much eliminates all foods that have flavor but come on, these days which of us isn’t on some form of that diet? The hardest thing about all of this is the waiting.

And waiting.

I’ve always been a bad at waiting. When I want something, I want it now and can’t and don’t want to wait to get it. When I was a kid I couldn’t wait for my birthday to get my present. I would scour all the hiding places in the house until I found it just for the satisfaction of knowing what it would be. I really haven’t changed in that regard. Now, waiting for my transplant is like waiting for that cool new toy. Plus, since I’ve known I was going to need a transplant it always seemed like it was just around the corner. First I had to schedule my testing at the transplant center. I was hoping that I’d go in, everything would be peachy, and they’d give me the go ahead. My transplant coordinator told me that almost never happens. Still, I hoped and thought that it was going to happen for me. After three days of being poked, prodded, and peered at, my coordinator said everything looked pretty good. The problem was, she doesn’t make the decision. The transplant docs do, and after going over my results they had just one little thing that needing checking. After that turned out to be nothing that would threaten the surgery, they wanted one more thing investigated, and so on and so forth. The whole time I was thinking they’re going to find this was really nothing and then they’ll schedule the transplant. Then, once I was cleared it was a similar situation for my donor.

Would I have been happier if they told me right off the bat the transplant wouldn’t take place for at least nine months? I really don’t know. The anticipation of having it done in the immediate future kept me going and kept my spirits up. Then again, having it constantly pushed back gets old really fast.

It’s been good that the weather has been nice for the last few months. Being cooped up in the house filled with anticipation makes it tougher still. Cabin fever is bad enough but it’s worse when you’ve got that carrot dangling in front of you because as many steps as you take forward, it keeps moving further away. And now that I think about it, when I found out at the end of May that it was going to be another three months until we knew anything, I did feel better in a way. At least I knew it wasn’t happening for a finite amount of time and it allowed me to enjoy my time a bit more. It’s actually been a really good summer!

So, while I’m waiting through what I hope is the home stretch, keep your fingers crossed for the hope that in a few weeks I’ll be able to write a post and say, “Finally! My transplant is scheduled for…”

Flying Lettuce and Other Mishaps

2011-08-16T14:43:00.000-07:00

By Roberta Durra

My ex-husband and I weren’t officially divorced. That would happen a few years after paying each of our lawyers enough money to move up several tax brackets. Eventually, we’d fire them and file for divorce at the “Legal Grind”, a coffee shop that offered coffee, donuts and divorce. At this time we were separated with restraining orders. Ex, had a new girlfriend, Audrey, and I had a new boyfriend. We were all too old to be each other’s girlfriend or boyfriend, so I think we referred to our partners as, partners. At this point in the evolutionary scale of learning about myself, I didn’t completely understand that the root of my problems came from my inability to say NO. Never wanting to hurt anyone’s feelings, I rarely did what was best for me.

I’d never met Audrey so I found it peculiar when she called to invite me and my partner to her Hanukah party. In an overly friendly manner I quickly answered, “I’d love to come”, while thinking I’d rather suck eggs. Had I been honest I would have said, “Audrey, it’s been really nasty between me and Ex and I think we’d both rather swim in shark infested waters dressed as wounded dolphins than spend an evening together at a Hanukah party”. But I was a people pleaser by nature. I didn’t want to appear rude and most importantly, didn’t want to disappoint my seven year old son who had been disappointed enough.

In the back of my mind I was intrigued by the idea of blended families. Audrey, her ex-husband, and his new wife would be there. Maybe we’d all bond at this Hanukah celebration amidst dreidels and chocolate coins. I ignored the voice that told me angry ex-spouses and fried potato latkes don’t mix. But I couldn’t say no. In fact, I offered to bring some food.

I asked my boyfriend/partner if he’d come with us to Audrey’s party. He had no problem answering,

“NO”

He knew what he did and didn’t want to put himself through. I did not.

Before going to Audrey’s party I tried to stop thinking of her as “Audrey 2”, the man-eating plant in Little Shop of Horrors. I didn’t want to slip and call her that. Unless I had to.

I spent the next week thinking about what food to bring to the party to impress the girlfriend of the man I hated. I decided on a big salad with elaborate fixings. That, I thought, would show her and her extended-blended family what a good cook I was.

As the time neared for my son and I to leave for the party, I had not grocery shopped, showered or dressed. Instead, I sat on the couch thinking of excuses that would sound legitimate when I called Audrey 2, to cancel. Telling my son we weren’t going to the party, and watching the tears well up in his eyes prompted me to splash water on my face, get dressed and get us both out the door and headed to the party. I’m most comfortable wearing jeans and a t-shirt. That night I wore a black dress and high heels that pinched my feet the minute I put them on.

My son and I stopped at the market to pick up a salad from the salad bar. The salad bar was closed.

“Can’t we bring popsicles?” my son suggested.

“Not tonight honey. It’s Hanukah,” I said, hoping he’d stop talking.

I ran awkwardly down the grocery aisles, my feet throbbing and heels click-clacking on the market floor. I pulled bags of lettuce off the shelf as though they were giving it away for free. Next, I ran to get canned Parmesan cheese - the kind I never buy. I grabbed an expensive ceramic, ovenproof baking dish and high-tailed it, click, clack, to the checkout line with my son trailing behind.

While we drove to Audrey 2’s house, my son bit-open the bags of lettuce. As he spit out the plastic I said, “Let me see the dish”. It was covered with a layer of dust. Parked near Audrey 2’s house, fifty minutes late for the party, I cleaned the baking dish with crumbled newspaper from the floor of my car. With a look of disdain I thought not possible for a seven year old, my son asked, “Isn’t that dirty?” Not answering I pierced open the Parmesan cheese with my car key and doused the lettuce in cheesy powder. “Let’s go”, I said, and we ran down the street to Audrey 2’s house.

While running, lettuce pieces flew out in all directions from the uncovered dish. My son picked up the lettuce and based on the five-second rule, put the lettuce pieces back in the casserole dish. Standing outside Audrey’s house, looking at the bowl of dirty lettuce, it suddenly hit me. I didn’t want to spend time with these people. I wasn’t ready to blend. I had no idea how I was going to fake goodwill toward Ex. I certainly knew I wasn’t doing my son any favors modeling a lunatic for him. Then clear as a bell, I knew that next time I’d just say NO! Easy as that. I guess some people have to run down the street in heels with dirty lettuce flying in all directions, to learn that lesson. I took a deep breath, put my free arm around my son and knocked on Audrey 2’s front door.

“Happy Hanukah”, my son and I said in unison as she opened the door.

“Welcome”, she said, as she took the salad. “What a nice salad. You shouldn’t have.”

The party turned out to be pleasant. I nodded a quick hello toward Ex while he sat playing piano. I think he nodded in return, but was probably nodding his head to the beat. Audrey 2 had nice friends and we talked standard party talk until Audrey offered to take me on a private tour of her home. When we reached the bedroom I meaningfully put my hand on her arm and shook my head from side to side. Suddenly channeling my grandmother, I said, referring to Ex…

“Audrey, Audrey, Audrey. WHY a musician?”

And she replied, “Because I’M a musician. My ex-husband is a musician. And all of my friends are musicians."

Fair enough.

I wasn’t invited back to the next Hanukah party. In fact, I can’t remember if Ex and Audrey actually made it to the next Hanukah together. There have been lots more Audrey’s who have come and gone. One special woman became a friend, and my son and I recently attended her wedding. Ex and I are pleasant to each other and the best news yet is, I occasionally flat-out say, NO. Oh, and I’ve stopped bringing dirty lettuce to parties.

When I’m not running late.

Play Ball!

2011-08-10T12:34:00.000-07:00

by David Goldman

As I’ve said before, I had a pretty normal childhood. My diabetes was never treated or perceived as an anchor by myself or my family. It seems like my summer days used to be spent outside playing ball and hanging out with friends. I know it wasn’t this way, but it sure seems like those days were always sunny, 80°, and light till 10:30 at night.

My friends and I used to have a great time. For a few years I went to day camp with a couple of them. Camp was fun, but we always were forced to do the prescribed activities such as arts and crafts, playing board games and watching movies on the rainy days. Don’t get me wrong. These things were all fine, but at that age all I wanted to do was play baseball or any other outdoor sport. Swimming was good, but somewhat tainted by the fact that we had to have lessons rather than just a free swim. Those free swim days were always a bonus. I’m sure the counselors thought the same. After all, that gave them time to sneak away and have a cigarette.

But it was after my summer camp days that formed my most everlasting memories of summer. In the spring of 1965 I was going to be entering fifth grade. Early that summer we discovered a little sand and gravel covered lot that was attached to a school in the neighborhood just west of ours. This little school was the Henry David Thoreau School. It was very small. We were never in it, but it appeared to have two, maybe three classrooms. The schoolyard, the sand and gravel filled lot, was also pretty small. It was a rectangle measuring maybe 100 feet wide by 200 feet long. One end had a strip of concrete on the ground and the rest of the lot was filled with the sandy, gravely mixture. There was nothing else in there. Just this open space. It was just perfect for a bunch of boys looking for a place to play ball.

It feels like we played baseball in that lot every single day. We didn’t have enough guys to play a regular baseball game. There were usually about 10 or 12 of us. So, we improvised. First, we’d choose teams. Two guys were arbitrarily named captain and they’d alternate choosing one player at a time for their team. The game was called Shortstop Out. We didn’t play with a regular baseball. We played with a spongy rubber ball the size of a baseball. They cost a dime and they’d last through a couple of games if no one hit it on a roof. There was no pitcher. You stood on the concrete strip and tossed the ball up in front of yourself and swung. If you missed, you were out. If you put it into play, you had to get to first before the ball got to the shortstop, wherever he happened to be standing.

It was a simple game and we played it for days and hours on end. We got to the point where we felt good enough to challenge the 6^th graders who had to be introduced to the game. Back then, a year’s difference in age could’ve been equal to ten years. It seemed as if all the kids knew their place. You didn’t hang out with anyone older or younger than you. That was just how it was. But the 6^th graders accepted our challenge, assuming they would crush us because after all, they were the 6^th graders.

It didn’t go according to their plan though. We knew that lot like the backs of our hands. We knew just where to hit the ball to make it take a crazy bounce and our fielding was really good by that time. I don’t remember the score, but we won. It was humiliating for the older kids so naturally, they challenged us to another game the next day. We accepted and beat them that game too.

We had a great time playing ball that summer. It got to the point where we didn’t even make any arrangements. We’d all just get up in the mornings, hop on our bikes and ride over. At lunchtime we’d take a break and ride our bikes back home. As soon as we had gobbled down our sandwiches we were headed back.

I’m writing this because today is one of those days. Everything about it reminds me of those times that have become such a part of me. I can walk outside and “feel” exactly what those days felt like. If I take a moment I can even smell the memories – the smell of the bat, the ball, and the air around us. I can even see everything as I did then, out of two eyes. I can hear the guys trying to intimidate the batter with the drone of the street traffic in the background. It only lasts a few seconds but it’s all there, all around me. For a brief moment I’m back there again. It’s truly like stepping back in time. I suppose those days were so enjoyable that I retained not only the details of what went on, but the atmosphere that came along with them.

I can only hope our generation’s children have memories like these -- memories that can carry them through a lifetime.

A Slight Addiction

2011-08-08T11:29:00.000-07:00

By Roberta Durra

Is anyone addicted to checking email? Come on. You can admit it. Will it help if I go first? O.K. I have a bit of a problem with the number of times I check my email. Oh, you want a more formal, heartfelt confession? All right, I am Roberta and I’m an email addict. Ouch, that hurt. But it’s true. I do it constantly, and I am not even looking for anything important. It’s not like I’ve got to run to the computer and get the email Barack just sent over regarding the debt ceiling. I am not expecting to read that HGTV has awarded me with my dream house, nor am I expecting an invitation to join the cast of Dancing With The Stars. I just like to read the occasional email sent by a friend. But my checking obsession has gotten so out of control that I can barely finish…wait, a minute, I’ll be right back.

Where was I? Oh yeah, I can barely finish a thought without running to the computer. By the way, while writing this paragraph I’ve checked my email three times.

The thing is, email is about connection. It brings friends, relatives, and spam together. Shooting off an email makes it easy to have connection while putting in little effort. I can whip off a quick hello, how are ya, and feel like I am back in touch with a long lost friend, or feel current with someone I speak with frequently. So I send out my little message and then tag, you’re it. Now all I have to do is check my email once every 15 seconds for your response.

I think electronic communication has gotten pretty much out of hand. I have friends who I’m sure are both checking and reading emails while we’re talking on the phone. I can tell by their distracted and disjointed answers to questions like….

Me: Did you like the movie you saw last night?

Friend: The….(long pause)….spaghetti…(pause)...I made was delicious.

I bet some people even answer emails mid-conversation. Even if the message clearly isn’t important and can wait until later.

Sorry, I just had to shoot off an email telling someone something. What were we discussing? Yeah, constantly using and checking one’s email is definitely disruptive. I bet Miss Manners would say it is impolite and ill-mannered to send out emails while doing other things, such as making love, attending a parent/teacher conference, or meditating at an ashram. Doing so makes you seem like you’re not really interested in the present moment. And here’s a news flash. You’re not fooling anyone. It is virtually impossible to hide the click-click sound of the keyboard. I, for one, am not tricked. I can tell when my friends are talking and typing on the phone. It’s not like the occasional pee you slip in when you’re talking and really have to go. This can be easily done with your phone friend being none the wiser. You just do your business and then be certain not to flush. But typing while talking, that’s a hard one to conceal. Am I supposed to believe the clicking noise I hear is your denture?

On the pro side of obsessive email check, I guess it can qualify as an aerobic exercise if you’re constantly running to a computer in another room. Also, I read daily how important it is to keep the brain occupied as we age, so here obsessive checking is a win-win. And I offer this in all sincerity, if anyone actually wants a penis enlargement, checking their email frequently allows them to have this information at their fingertips.

It’s gotten to the point where I have to lie about my problem. Say, I’m in the middle of dinner and the urge hit’s to check my email. I suddenly feel as if I can’t finish my half-eaten burrito because I must know NOW if my friend has sent me the 5% off admission to the 2012 Boogaloo Revival Concert in Whitehall, New York. It would be both odd and rude to ditch my family at the dinner table and jog upstairs to the computer. Instead, I say something like, “I’ll be right back. I think I left the iron on.” This works like a charm. They don’t have an inkling that I haven’t plugged in an iron for some 20 odd years.

There is much more to say on the subject. It is definitely worth further exploration. And I will do that in just a moment… First I have to check the iron.

This One's Gonna be Tough

2011-08-05T08:57:00.000-07:00

by David Goldman

So, it has been two days since my minor surgery and I’m doing fine. My arm’s a little sore but not too bad. Yesterday at dialysis, all the dialysis nurses and techs were saying how beautiful my fistula was . To each, their own I guess. To me, it looks like a gigantic worm crawled just beneath the surface of my skin inside of my right elbow. On a disgusting scale of one to ten, I’d personally give it a six, maybe a seven. To be honest, if I was eating in a restaurant and someone came and sat across from me and had a scar that looked like this, I’d stop eating. Then again, I can’t even stomach it when I’m eating and someone is blowing their nose nearby.

Overall though, everything went very smoothly. There are always a few dos and don’ts and caveats they tell you about after the procedure because they don’t want to scare you too much beforehand. For example, when I had my pancreas transplant I found out two hours before the surgery that I was going to need a Foley catheter inserted up Lil’ Davey and kept there for three weeks after I got home. When I asked why nobody told me about this earlier, the nurse said, “Because you would have been dwelling on it for the entire time you were waiting, and when it came right down to it, you wouldn’t refuse the transplant because of it, right?” She was right. All I would have thought of was that damned hose sticking out of me, and while I dreaded the thought, it wouldn’t be enough for me to turn down the opportunity to no longer be a diabetic.

So I’ve learned that doctors and nurses strategically leave out certain key bits of information before surgery. I’m sure if you’d think to ask them a specific question they’d answer it honestly. On the other hand, they must not believe that lying by omission is actually lying. Ever since my pancreas transplant though, I have asked if a Foley catheter will be involved no matter what I’m going in for. You’d be surprised how often they enter the arena, so to speak.

This was a minor surgery though and I assumed any strategically omitted information would also be minor. And I was right. After surgery they told me a few things that I had to watch out for or could no longer do. I have to check my pulse in the fistula twice a day. Not really a big deal. I also can’t ever have blood drawn from the arm with the fistula. Again, I just have to remember it. It doesn’t seem like it will inconvenience me in any way. Another rule is that I can no longer sleep on my right side. It’s my right arm that has the fistula. This is a bit of a bummer because I do often sleep on that side. Oh well, I’ll manage to live without the comfort of that position.

Then, they hit me with a right hook that I never saw coming. “Oh, and you can no longer wear your watch on that arm.”

“WHAT?! You’re kidding me right?” I asked in stunned disbelief.

“No, you can’t take the chance that the watch will slide up your arm and constrict the blood flow,” I was told.

“And how long does this last for?” I asked, although I was afraid I knew what was coming.

“Well … forever,” was the brutally cold response.

This may not seem like a big deal to you upon first hearing it, but trust me. It’s a big deal! Forgive me if I offend you, but the closest analogy I can draw to this is being told that you have to wipe your butt with the opposite hand for the rest of your life. It’s completely unnatural! You’ve spent your entire life doing certain things, certain ways until they become little software programs that your mind runs automatically. They’re almost like breathing. You don’t even think about them. Wearing a watch on a particular hand is one of these behaviors. From the way you clasp or cinch it to your wrist, to the way it doesn’t even feel like you’re wearing it. There is the finely tuned synchronization of eyes and wrist melding into a mini-ballet of subtle, graceful movement when you look to check the time. It’s a dance I’ve done to a particular rhythm my entire life, and now I have to learn to do it all backwards?

I tried finding a an error in their logic. Anything so I could continue wearing my watch the way I always have. But, it was to no avail. I told them I would trade them wearing a Foley catheter for a month if they would just let me wear my watch on my right arm. “No,” was all they said as they pried it from my wrist. I was defeated.

It’s been just over three full days now that I’ve been wearing my watch on the left arm. The whole situation is just wrong. Whereas I never felt the watch on my right arm, it now feels like a 20 lb. weight hanging from my wrist. Trying to read the time is something I now have to think out in advance – turn your head to the left, look down while bringing your left wrist up and slightly twist the wrist towards you. It never works. My eyes either get there too early or too late and when my arm comes up, the face of the watch has somehow twisted to the side of my wrist facing away from me. Putting it on and taking it off are like watching moments from the Theater of the Absurd. Everything about it is foreign and clumsy.

I’ve been told not to use a watch if I find it so awkward. “Young people don’t use them anymore.” I know. I’ve seen the trend over recent years that has those under 30 using their cell phones as timepieces. I thought about it, but I hate the thought of digging into my pocket, pulling out the phone, and pressing the button, just to see the time. Yes, I’m probably being overly dramatic, but it’s tough having to replace a small piece of my lifestyle that worked like, well… clockwork.

Maybe I can start the comeback of the pocket watch.

My Man Todd

2011-08-03T11:56:00.000-07:00

by Roberta Durra

I have fallen in love with a new man. I met him in Seattle while touring colleges with my son and he has been travelling with us ever since. We both took an immediate liking to him, which is unusual, and agreed that having him around makes our life easier. Todd is a great traveler and he seems to know his way around everywhere. I can’t begin to tell you what a tremendous asset he has been on this trip. He is calm and steady by nature, very flexible, and almost impossible to rattle. I don't know much about Todd's background. He is very mysterious. What I DO know is that he has a soothing voice, like a Shakespearean actor or a radio announcer. We bought him in an Apple vending machine at a Macy’s in downtown Seattle. Yes, Todd, the name we’ve assigned to the voice of our Garmin GPS unit has been a godsend.

The voice of Todd did not come on board immediately. In fact, our man voice was not our first voice choice. When we first set up the GPS we picked the voice of an American woman. We spent one day taking directions from this Bossy Betty and both agreed she had to go. After giving her the boot we programmed in the voice of Todd. He didn't come with the name. This evolved organically and like naming a dog or a child, we both knew it was the right name the moment my son said it. We both like Todd's voice, but the one thing we would change if we could, would be to make Todd British. Who wouldn't want Jeeves directing them on vacation?

This may all seem mundane. However, I have not had a talking GPS before. Actually, I do have a GPS in my car at home, but I haven't figured out how to activate the voice. There aren't many times I really need a GPS in Los Angeles.But travelling by car in an unfamiliar city is a GPS of another color. My son asked me the other day, in all seriousness, how we ever navigated pre-GPS. I looked at my 21st century boy, who has never dialed a rotary phone, watched a black and white TV, nor used a phone booth, and said, "DUH, maps" I immediately flashed upon myself in the passenger seat wearing reading glasses, totally frustrated with a large, unfolded, crumpled map in my lap, trying to figure out if we should turn right or left, and suddenly found his question quite valid. How DID we navigate before we had the luxury of "Todd"?

Like any relationship, there is bound to come a time when the honeymoon ends. Today my honeymoon with Todd came to a crashing halt. My son and I were driving to an early morning college tour in Portland, when the combination of too little sleep, no coffee, and non-stop 24/7 togetherness for days on end made us both quite irritable. We started arguing about whether or not he was driving too close to the car ahead. I don't know about you, but whenever I find myself in the unfortunate position of being the third wheel around people who are not getting along, I keep my mouth shut. But not Todd. He seemed utterly oblivious of the tension in the car and kept interjecting his thoughts.

"In point seven miles, turn left at Center Avenue." Thanks, Todd.

My son and I continued heatedly voicing our differing opinions about driving, back seat drivers, and how he finds it jarring when I slam on an imaginary break while sitting in the passenger seat. With each sentence our voices and tempers raised considerably. I was in the middle of pointing out that I had been a perfectly calm passenger the entire trip and he should cut me some slack, when Todd rudely interrupted by chirping,

"In point two miles keep left and take exit 302 B. Then turn right".

ARE YOU KIDDING ME, TODD? Do you not have a clue? My son, who at this point is white knuckling the steering wheel, completely ignores both Todd and me. This eggs me on further and Todd has the unmitigated gall to RECALCULATE.

"Recalculating, in point four miles, turn right on Holiday Avenue".

This guy is out of control. He's got the manners of a toddler who’s overdosed on Sugar Pops. Was he born in a barn? We are having a family meltdown and all he cares about are directions. When at long last we finally arrive at the college, my son and I make peace, but Todd is fed-up. He also sounds exhausted. I think the pressure finally got to him. We didn't use him on the way back, and I'm not sure I want to use him again at all. In fact, call me crazy, but I'm considering buying a map.

One More Minor Surgery

2011-08-01T09:31:00.000-07:00

by David Goldman

It’s time again. It seems like I can never go too long without some type of surgery penciled in on my calendar. I’ve honestly come to regard surgery as an irregular, but consistent part of my life. I’ve lost count of how many I’ve had – eye surgeries, transplants, and surgery to remove a tool left in me during another surgery, to name just a few. I’ve gotten to the point where, when the doctor tells me they’re going to be giving me the anesthetic, I try my hardest to stay awake just to see how long I can. My record, based on me counting, is seven seconds. Tomorrow’s surgery is a little bit different though because it is not fixing anything that needs to be fixed and it is something I hope I’ll never have to use as intended. I’m having a fistula put into my arm.

A fistula is something that occurs naturally but it is also something that’s done intentionally to many dialysis patients. In this case, what’s done is a vein and an artery in the arm are both cut and then fused together forming a loop. It’s normally done through vessels that have a relatively high blood flow. As this junction heals, it grows very large and thick, allowing an exceedingly high blood flow. Because it’s close to the surface of the skin, it offers an ideal spot for blood to exit and re-enter the body for the dialyzing procedure.

Currently, the dialysis machine is connected to me via a chest port. This consists of two tubes that come out of my right chest and on the interior, lead straight into my heart. This system has been working fine. However, my best prospect as a kidney donor and subsequent transplant found out at the end of May that she’d have to wait three months to redo a test to see if she is an eligible donor. When my doctor found this out she decided it was time to switch me over to a fistula. Without going into too much detail, she said that the current system I have is never meant to be permanent or long term because it puts the patient at high risk for infection. Seeing as the tubes lead straight to the heart, she said that if an infection comes in, it will immediately go to the heart and if I survived, I’d never be eligible for a transplant. Enough said! She then gave me the option of doing it or not. I don’t know about you, but when a doctor you trust says, “If you survive” it’s an attention grabber.

Given the way the medical system normally works, it took a few weeks to get an appointment with the vascular surgeon who performs this procedure, and a few more weeks for it to be scheduled for surgery. The surgery itself is a pretty minor, outpatient affair. It’s done under what they now call, a twilight anesthetic. This concept fascinates me because you’re awake and able to communicate throughout the operation, but when the drug wears off you have no memory of what happened. Given that you’re conscious, I always wonder if it hurts while the cutting’s being done. I’ve had several surgeries done this way and everything’s been fine. One minute you’re in the operating room and the next, you’re in recovery with no recollection of the time between. I’ve got to remember to ask this time if my alter-ego, who’s awake and talking during the procedure, said it hurt.

I mentioned that I was hoping to never use this fistula. It’s because the healing process, which is which is also a “ripening” process, takes a good eight to twelve weeks to get to the point where it’s usable for dialysis. The fistula has to grow as it’s healing and has to get to a certain size before it can accommodate dialysis.

My hope is that I will have this done, and in the eight to twelve weeks I’m waiting for it to become useful, my potential donor will be cleared and I’ll have had the surgery I really want to have – my kidney transplant. Keep your fingers crossed!

College Bound

2011-07-29T08:40:00.000-07:00

by Roberta Durra

My son and I are on day three of our ten day journey checking out colleges in the Great Pacific Northwest. So far we have seen three completely different institutions in Washington, each varied in location, attitude and academics. For the first day we started with Seattle University which is run by Jesuit Priests. It is a highly academic, service oriented university smack dab in one of Seattle's hippest neighborhoods. The following day we drove to Tacoma and visited the University of Puget Sound. With its diverse course offerings and extensive travel abroad opportunities, it seems like a great school. Today we drove down to Olympia, Washington and saw Evergreen State College, and booyah... it’s a wonderful fit! I really didn't think we would hit the jackpot this early. The college has so much to offer in terms of creative exploration and freedom and it's situated on countless acres of gorgeous green land. I am completely excited about this school. It is perfect!

For me.

The only hitch is, I'm not the one looking. My son is, but never mind him. Seattle may be the home of Nirvana, but I have found paradise at Evergreen State in Olympia, Washington.

When we drove up to the information booth I felt like we were going to get directions to our campsite. I kept waiting for them to tell me when the firewood truck made its rounds. The place is gorgeous. There are mature trees everywhere. As if planned, (and maybe it was) we saw three deer lazily munching leaves a few feet away. They seemed totally unaffected by our arrival and definitely had the aura of upperclassmen.

The tour started with an informal sit-down with an admissions officer. A recent Evergreen graduate, she enthusiastically took us through the unique class structure that makes Evergreen different from any college you will ever visit. "Instead of taking four or five separate, unrelated classes each quarter, you will take one program that unifies these classes around a central theme." For example, one quarter she took a block of classes called, (I paraphrase here because this is where I was hit by the lightning bolt of college love), Madness, Creativity and Other Stuff. Did she say a full quarter of all things mad and creative? And I get college credit for this?? Or you can choose from endless combinations of wild and interesting topics. Try a quarter of, "Animal Morphology, Motion and Mind", or "Me and the Mirror - Dance and Scenic Design", or "Taking Things Apart". And don't worry about those irritating letter or number grades. At Evergreen, they will not follow the Neanderthal-like ritual that reduce you and your work to an arbitrary number. Instead, there will be detailed assessments written by professors and by the students themselves. I get to grade myself! And, I will get to read thoughtful and provocative evaluations written about an extremely fascinating topic. ME!

The campus buildings are LEED Certified architecture masterpieces. They are tastefully designed to fit perfectly in the natural setting and are built using cutting edge materials. There are studies showing that students do better when they look out at green space. So each classroom is graced with large windows affording a magnificent view that beckons you to space out to your heart’s content. I will do this often.

Boring classes like, Math 101? Fa-get-da-bout-it! Instead they have a wide variety of expressive art classes that can be grouped with geographical studies, scientific inquiries or environmental concerns. There is an organic garden where you can grow vegetables and then you can sell your produce at the farmers market on campus. Basically, if you have an interest, they can, and will, put together a block of classes to accommodate that passion. I have many interests and I am excited about combining my love of rocket science with my passion for floral arrangements and dentistry. There is also an independent study contract where you can go off for a year and meditate with Shaolin Monks, engage in competitive sushi consumption, or play golf with Walt Disney. How you ask? You dream it…you can do it. All you have to do is Skype your daily observations to your instructor back in the forest.

I am very excited about joining this community. I want to apply immediately. However, I do not have a passion for filling out paperwork. Oh, and I still have to find a school for my son.

What's the Point?

2011-07-27T12:48:00.000-07:00

by David Goldman

I don’t understand people who constantly complain. I have a friend who I met at a diabetic mini-camp when I was 10 years old. At that time, he was recently diagnosed and was still getting acclimated to life as a diabetic. At the time, he was very unhappy which I thought that was normal for someone who had just found out.

But he’s been that way for the last 45 years. Like me, he’s undergone a kidney and pancreas transplant so he is no longer diabetic and has full kidney function. He’s also had some minor problems with his eyes and very mild neuropathy so one of his feet gets a bit numb on occasion. But he can live a fairly normal life right now. He does have to take the anti-rejection drugs that come with some risks and some side effects and go through regular blood tests to make sure his transplanted organs are functioning properly, but they’re still better than being a diabetic with no kidney function or even worse than that.

Yet, whenever I talk to him he complains. I’ve heard everything from the pills are making him fat (which they can do) to how unfair “all of this” has happened to him. I remind him it always could be worse. I tell him to remember when he was on dialysis there were times he was so weak he had to leave the clinic in a wheelchair, or that he was lucky that his eye disease occurred at a time when he could be successfully treated and have his vision saved. While he acknowledges that things could be worse, he always ends up dwelling on the things he had to go through. The last time we spoke I tried to get him to concentrate on the positive by telling him something that happened to me a number of years ago.

I was 22 years old and at Mayo Clinic to see if they could do anything to save the vision in my right eye. The doctors told me there was a slim chance they could. They estimated it at about 15%. Not great odds, but if I did nothing I was going to lose the vision in that eye for sure. The surgery was the next day. I was lying on a gurney in pre-op and the curtain separating me from the patient next to me was partially pulled back so we could see each other’s faces. I was feeling somewhat sorry for myself. Chances were, I was going to be blind in one eye for the rest of my life and it was hard to see (pardon the pun) past that. I looked at the person on the gurney to my right. He was probably around the same age, maybe a little older, and I asked him, “So what are you here for?” He slowly turned his head to me and said, “Malignant brain tumor”. I heard that and told myself I would never feel sorry for myself again. I realized I was in an institution that is a last resort for a lot of people and while saving vision in one eye was important, I knew there was always something worse.

My pancreas donor’s mother once said something to me that really struck me. This was about a year and a half after she lost her daughter to a car accident (June 6^th & 7^th). She said everyone always asks her how she’s doing and she always says she’s doing fine because she thought that was what they wanted to hear. She said if she told the truth, that she felt horrible because her daughter was gone forever and she felt like giving up, the listener would give a generic “it will take time until you’re better” response and quickly try to change the subject.

I think the same is true to a certain extent when you have a chronic disease or condition. People will ask how you’re doing out of politeness and concern, but do they really want to hear the details? Especially the negative details? Most likely not. I do share those kinds of things with my close friends and family, but most of the time I just say I’m doing fine, which is the truth. Yes, I may have some sort of problem going on but I can’t see the point in broadcasting it. So to go through one’s entire medical litany of problems like this friend does just doesn’t seem necessary. I’ve thought that maybe it makes him feel better to spill his guts but then I immediately think that he never sounds any better.

Maybe some of us are just naturally cup half full types and the rest are cup half empty types and that can’t ever be changed. It seems as if, generally speaking, the complainers always find something to complain about. When someone asks if dialysis is difficult, I tell them that the time commitment is a pain in the butt, but each time I enter the hospital’s clinic and see how sick some people are, I honestly consider myself lucky. When my friend goes to do his regular lab work every three months, he never fails to complain about the bruise he gets where the needle was inserted.

I suppose everyone’s problems are big to them. It’s all relative. Your biggest problem is your biggest problem and you can’t really compare it to my biggest problem. But in a way you can. If your problem isn’t truly life threatening you can be happy that you’re not that guy with the malignant brain tumor who was lying next to me. You can be happy that you’re here, able to enjoy another day.

On Becoming Non-Diabetic

2011-07-22T10:33:00.000-07:00

by David Goldman

I’ve recently received a few emails from people asking about the hows, whys, and whens of getting a pancreas transplant. A pancreas transplant alone is not a very common surgery. In 2010, 350 were performed nationwide. In 1997, I was one of the lucky 210 people who was given the opportunity to have this operation and start fresh. At that point, my transplant center’s success rate (insulin free after one year) was 90%. I thought the odds sounded good, especially considering what I was going through. Most diabetics however don’t get just a pancreas transplant. It is more common to get a pancreas transplant when you also need a kidney transplant. Last year 850 kidney/pancreas transplant were performed in the U.S.

A little background: I developed diabetes at 18 months of age. By the time I was 21, I was suffering from diabetic retinopathy (rupturing blood vessels in the eye), which often leads to blindness. I already had developed high blood pressure and a little less than six years later I found out I had diabetic nephropathy (diabetic kidney disease). As a consequence, I had several surgeries on my eyes and the doctors were able to save partial vision in one eye. I had a kidney transplant that ended the kidney failure and that lasted almost 25 years until it failed about seven months ago.

After my kidney transplant everything seemed to be very good. This was in 1986 and it was when home blood testing for diabetics was just coming to the market. My doctors thought it would be a good idea for me to start checking my blood sugars regularly. This was due primarily because one of the anti-rejection drugs that I was going to be required to take for the rest of my life has a side effect of driving the blood sugar up. Not a good thing for a diabetic. Also of course, it’s a good idea for any diabetic to know where his or her blood sugar is at. When I started testing and found that my sugar was high, I would take more insulin which would drive my sugars down. Except then it would come rocketing back up anywhere from a few minutes to a couple of hours later. So, I was left with uncontrollable blood sugars. They yo-yoed up and down, day after day. I’d spend parts of each day recovering from an insulin reaction and parts of the day trying to rid myself of the nausea, tiredness, and twitchiness of high blood sugars. To simulate the feeling of having your blood sugar too high, quickly drink six cups of coffee and eat four packs of Skittles. You’ll get the idea.

Living like this was not just uncomfortable, it was impractical and had serious medical complications. I wasn’t doing my job as well as I knew I could, I felt lousy. Not a preferred way to live. After discussing possible protocols with my doctors, it was decided that a pancreas transplant would be the best option. The other choice was an insulin pump. However, that is just a better form of insulin delivery. It didn’t really address my problem of rapidly rising and falling blood sugars. If successful, a transplant would render me as a non-diabetic and would slow down or halt all the progressive damage that was being done to me. One thing I should add. I’ve never had a fear of surgery. I always knew I would come out the other side of it better than I did before. So while I had a wife and young son, I didn’t feel I was taking a risk. Stupid assumption? Probably. But for me it was the only route.

So, on June 7^th of 1997 (Click here to read that story) I had a successful pancreas transplant and have technically not been a diabetic since.

So why don’t all diabetics get a pancreas transplant? There are several good reasons. For one, there’s the surgery itself. It’s a major surgery and has all the risks any major surgery has. A large incision is made in the abdomen and a second pancreas is put in. They do not remove your original pancreas. Besides insulin, the pancreas produces other important enzymes. When you’re a diabetic, your pancreas may not secrete insulin, but it does produce these other enzymes, so the original pancreas is left in. Then you have to take anti-rejection drugs the rest of your life or for as long as the transplant lasts. These drugs are very powerful and have a wide range of side effects. Plus, what the anti-rejection drugs do is make you immunosuppressed. Without these drugs your immune system would attack the new pancreas just as it does any other bacteria or virus that invades your body, and would render it useless in a matter of days. So, you take these drugs that weaken the immune system leaving you in a state where you’re less resistant to disease and infection and any disease or infection you do contract can be far worse because of your inability to fight it. Plus, you may go through all of this and the transplant might not work!

Given all of this, the decision as to whether or not you’re a candidate for a pancreas transplant is one you have to make with your doctor(s) and a transplant center that does pancreas transplants. Keep in mind that some doctors don’t know a lot about, and therefore don’t think of a pancreas transplant. I recommend that if your doctor says no, still consult with a transplant center. Getting more information and educating yourself can never hurt.

If it’s decided that transplantation is the right path for you, when to do it can be a tricky question. If you’re relatively healthy, no transplant center is going to do the operation. Most diabetics who receive a pancreas have already had some significant impact from the disease with possible indication of more to come – things such as kidney disease, retinopathy, coronary problems, or neuropathy. As I said above, a simultaneous kidney/pancreas transplant is twice as common as a pancreas alone.

There’s also the financial consideration. Many diabetics are uninsurable so a pancreas transplant seems out of the question. But, if you’re a diabetic who needs a kidney transplant, Medicare will pay for a simultaneous kidney/pancreas transplant. They will also pay for a pancreas after you’ve had a kidney transplant, and in some cases, pay for a pancreas transplant even if you haven’t received a kidney.

So is a pancreas transplant right for you? A lot of your own research, input from knowledgeable doctors and soul searching will help you answer that .

Bonus Year

2011-07-20T09:51:00.000-07:00

By Roberta Durra

My son is a young man. At 18 years of age he dons many outward signs of manhood: a stubble that can cover most of his face with only a few bare spots, shoulders that have broadened noticeably, and legs long enough to easily take two to three steps at a time on any given staircase. His voice has lowered considerably. When people call the house and he happens to answer the telephone, they no longer think he’s me. He drives his own car, makes his own schedule, and pretty much runs his own life. And he is truly excited about going to college.

I can see our goodbye now. Come September, I will drive with him to begin his college life. We will have a few suitcases filled with most of his favorite things, and we will have put the rest in deep plastic containers purchased at Target. We will have gotten him a new bedspread and a few accessories for the dorm. I will go up to his room and meet his roommates. Long before I am ready he will give me a hug signaling that he is ready for “mom” to leave and his new life to begin. I will want our hug to last a bit longer. He will feel emotional but will control himself so as not to look like a mama’s boy, which he clearly is not. He will laugh uncomfortably at my emotionality and say, “Come on mom. We’ll talk soon”. I will hold it together until I get myself back in my car and then it will hit me and I will cry. My baby is gone. Our years of living together and loving, sparing, arguing, laughing, sharing, annoying and enjoying each other are over. Now is the time for a new phase in our relationship. We will still have a strong bond, but it’s not like when he was younger and really needed me. I will imagine his old bedroom with the surfing poster above his bed and his guitar on its stand. It will all seem to have gone too fast. Wasn’t he just dressing up as a firefighter and snuggling with me while I read him bedtime stories?

Mothers and sons have interesting relationships. As best I can see, most mother and son relationships are not mired in the drama and angst that mothers and daughters can muster. Boys love their mothers and my boy was very open about that right until his facial hair started coming in. Then things changed. He didn’t want to need me and he pushed me away. This came in the form of rudeness, arguments and disobedience. I tried to teach my son to be an honorable man. I talked to him endlessly about life and choices and doing things that you love and treating people well. I endured the eye rolls and knew the boy I loved was in there somewhere. I listened intently when in an unexpected moment he shared the pain of his first break-up. I watched him move on and learn that there is indeed, life after first love. Sure, we went through a few difficult years but now that he’s off to college it all seems so normal and age appropriate. Why did I ever get wrapped up in the drama? Why didn’t I just realize that this would all pass so quickly and I would miss him terribly when he left?

Admittedly, the rough patches were somewhat difficult, like the period when he refused to make his own breakfast, or cook anything. By cook, I mean put two pieces of turkey on two slices of bread and call it a sandwich. I feared my skinny teenage boy would waste away to nothing if I did not prepare French toast or an omelet each morning, so I grudgingly cooked for him before he went off to school. And then there was the time when I was so irritated with his laziness that I frisbee’d his plate of food down the counter towards him. There was the constant “clean your room, do you think I’m your maid?” debate/argument/tirade, that I would get in to with him weekly. Who am I kidding, daily! And of course there was his habit of waiting until his laundry was bursting out of his closet with a will of its own before he would even think to stick the whole thing, in one load in the washer. Didn’t I ever talk to him about color sorting? Of course I did!! I vividly remember discussing this. And his bathroom… towels on the floor, hair in the sink? Who does he think cleans this? And the times he forgot to call when he was late or sleeping at someone’s house, and his phone wasn’t on, and I’d wait up losing sleep and eating cookies?!

Wait a minute! What am I talking about? This stuff is happening NOW. Right now. And he’s not off to college in September. I made a decision to hold my son back when he was in kindergarten. He has an extra year. A bonus year. He’ll be a senior this fall! I’ve got another year to put up with his self-centered, arrogant, me, me, me ways. I have to deal with this man/child living in my house 12 more months, the guy who is happy one minute and a moody beast the next. I’ve got to continue living and sparring with this great big ball of male hormones?!

I remember deciding to give him an extra year in kindergarten so that he could mature at his own pace and not be the youngest boy in his class, always struggling to catch up. I did it for him, and if I am perfectly honest, I did it for myself. I wanted another year with my boy before he went off to “real school”. And now I have an extra year with my nearly grown-up boy. And it’s not always pretty, and it’s not always comfortable. But the other night he unexpectedly called me into his room and played a beautiful song on his guitar and then we talked for a long time. We talked about movies, and girls, and dating. He told me that although he can’t wait for college, he likes being one of the oldest in his class and he’s happy he has another year before he leaves. He sat with his legs folded on a chair and I sat on the edge of his bed and time passed quickly. And I didn’t notice his bulging laundry, nor his dirty dish left on his desk from early that morning. I noticed his wisdom, humor, and easy manner. I noticed his handsome face and how his eyes sparkle when he laughs. I sat with my son and really appreciated the fact that my time living with him has not yet run its course. I remembered that day long ago when I made the decision to hold him back and I thought to myself, nice move. I’m really glad I did.

Left Powerless

2011-07-17T09:34:00.000-07:00

by David Goldman

A power outage. I imagine we have all lived through one or a dozen in our lives. Where I live, our power goes out on an average of about once every two years. I don’t have statistics to back this up; it just seems that way. And when it does go out, it’s usually only for a matter of hours which really isn’t a big deal. This past week though, was a whole new ballgame. We went almost three days with no electricity. To be precise, 66 hours and 16 minutes, give or take 10 minutes. You may be thinking two days, 18 hours, and 20 minutes isn’t so bad, and you’d be right as long as it wasn’t you living through them. So how did I spend my three days of pioneer living? Read on …

Monday, 8:00 a.m. – I’m in the shower and I can hear the storm outside. I’m thinking it must be a good storm if I can hear it in here. The moment this thought crosses my mind, the lights go out. The bathroom door is closed so it’s pitch black. Great. Fortunately by now I’m pretty familiar with my body parts and their placements so I can finish my shower. But shaving is definitely ruled out. My wife is off of work today and being a guy, my first answer to the what-are-we-going-to-do without lights question is of course, sex. Before I can broach the subject Debbie tells me she’s going to run errands. Must be that spousal, mind-reading trick she’s so damned good at.

Monday, 9:00 a.m. – Still no power. Commonwealth Edison or Com Ed as they’re called, has an automated call line that tells you when to expect your service to resume. I know this because I’ve lived through enough outages to know the routine. I even have their number in my cell phone directory. I call and get a busy signal. This continues for the next two hours. I finally get through and start the automated process. I enter my home phone number, my name, my address and my preference to boxers or tighty-whiteys. Finally, I hear this from the automated attendant, “We have completed an analysis of the situation and have determined that your restoration time is …” What? How long? “… unknown. Thank you for calling Com Ed. And, you can access Com Ed on the web at w-w-w dot com ed dot com.” My first instinct is to shout into the phone, “How the hell am I supposed to access your web site if I don’t have electricity?” But I picture myself yelling at the computer at the other end of the line and decide against it. I figure this is probably going to go on for a while. I work from home and with no computer, I can’t work, so I take the dogs for a walk.

Monday, 6:00 p.m. – I’m at dialysis and it turns out that most of the people there, staff and patients, are also powerless. We share stories about where we were when it happened, when are we getting the power back, and how odd life is without the background noise electricity provides. One nurse tells me that every time their power goes out her husband wants to have sex. I respond by telling her that when our power went out, my first thought was to see if there were any elderly neighbors who needed assistance.

I decide I’ll try to call Com Ed again. I enter all the critical data. Still no estimated restore time.

Tuesday 3:00 a.m. – I’m tossing and turning in bed and I haven’t slept a wink. I’m so used to going to bed with the TV on that the complete silence is unsettling. It’s also unbearably hot by now. It was 90° today and all the cool air the AC had provided is long gone. The windows are open but there’s nothing even close to a breeze. I decide I’m going to go sit in the car with the air conditioner blowing. I tip toe past my sleeping wife and dog and make my way out to the car. Here I can listen to the radio and recharge my cell phone which is almost dead because I’ve been obsessively checking my email on it all day because I have nothing else to do.

I sit in the car listening to a discussion of whether or not a guitar that’s being auctioned off is the one Carl Perkins used on the recording of “Blue Suede Shoes”. Various experts and pundits weigh in with their theories and proclamations. I’m amazed at what I’ll accept as entertainment when I’m shut off from the rest of the world.

Tuesday 9:00 a.m. – I’ve showered in the dark again and I’m ready to start my second day of doing nothing. Within a couple of hours I need to charge my phone yet again. I start the car, connect my phone, and let it run while I sit in a lawn chair on the porch where I can make sure nobody decides to drive off with the unattended car. I bring Homer & Frannie out on leashes to bide the time with me. I also have an iPad with the book I’m currently reading. Forty-five minutes later I’ve completed the book and because there’s no Internet connection, I can’t download another one. Instead, I start playing Battleship on the iPad. In the course of a mere four hours I work my way up from a lowly sailor to lieutenant commander, to captain! I sit back, aglow with the satisfaction of my achievement.

At 5:30 p.m. Com Ed has a restore time! My power will be back on at 10:00 p.m. Hallelujah! We go out for dinner and get home around 9:00. It’s still completely dark in the house but at least we know it’s only going to last for a couple more hours.

Tuesday, 11:00 p.m. – The designated time comes and goes. Still, no lights. I wait an hour and call my friendly, automated voice at Com Ed. I properly answer the cavalcade of questions and hear, “the estimated time for restoration is … no estimated time” followed once again by the suggestion that I visit them on the web. Yes, they actually said the estimated time is no estimated time.

However At 12:30 a.m., Wednesday morning, my automated nemesis tells me our restoration time is 6:30 a.m. I fall asleep knowing that I have taken my last shower in the dark.

Wednesday 5:45 a.m. – The temperature dropped so I slept well. I wake up, look at the clock, and realize the power will be back on in just 45 minutes! Silly, gullible, me. 6:30 a.m. slips in and out of existence with nary a trace. Com Ed’s phone lines are busy, most likely with other aggravated customers. At 8:00 a.m. I get through to the automated system. I go through all the steps again: name, phone number, and address. I’m asked to name a word that rhymes with “gulf”. I quickly realize it’s a trick question and assertively state, “No words rhyme with gulf!” The dejected robot voice tells me I am correct and the time for power restoration is now 11:00 p.m. that night.

I’m getting much better at doing nothing. At 4:00 p.m. I go to dialysis and find out that all the other people who had lost power now have it back. All that is, except me. But at least I’m hopeful that it will be back on late tonight.

Debbie picks me up from dialysis and we grab some dinner at a nearby restaurant that actually has electricity. I stare, open-mouthed at the electronic appliances all whirring and moving. We get home about 9:30, take our respective flashlights, and wait for the anointed time.

Wednesday, 11:00 p.m. – Nothing. I’m still staring into the blackness. When I call Com Ed this time I’m connected to a live person. She tells me there’s no updated information. I ask if the problem is being worked on and she says that all the problems are being worked on. “So, is there is a crew working right now to get my power back?” I ask.

She replies, “I don’t know.” I tell her this really isn’t helpful information and she tells me I can check their web site for further information. I ask her if she’s joking and she seems insulted.

“Do you understand that I cannot check your web site because I’ve had no electricity for almost three days and therefore I have no way to access the web. She tells me that I can go to a library. I thank her for being particularly unhelpful and hang up.

Now I can’t sleep because I’m so agitated. I’m lying in bed devising a revenge strategy when, at 2:15 in the morning, the TV and bathroom lights come on. I hug my TV, bow down in homage to my clock radio, and kiss the air-conditioning vent. Our three day, camping in our own home experiment is over! I’m so excited I still can’t sleep, but I’m so overjoyed I don’t care.

Later in the morning I’m watching the local news and a field reporter is in a nearby area that’s still without power. She’s winding up the story and, as an addendum, she notes that in a recent customer satisfaction survey, Com Ed ranked 112th out of 124 Midwestern utility companies.

Clearly they’re working hard on grabbing that 124^th position.

Why I Haven't Written

2011-07-16T19:29:00.000-07:00

Here's what I've been up to. See you next week! Roberta