Why I Ride

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

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

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

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

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

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

The Waiting IS the Hardest Part

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…”