Tag Health

The Next Step

Michael 12 Comments

Welcome to another episode of As the Kidney Turns. When we last left our hero he had just been referred to the local transplant team for evaluation for a potential transplant. Yesterday he got the call to schedule that appointment.

Yes, I got the call Wednesday afternoon for a phone review and to schedule the first kidney transplant evaluation appointment! Even though I spent my career in health care and even participated in post-transplant processes (more on that in another post coming soon), this is going to be a new experience for me. I said I’d keep you in the loop with the process and we start here if you’re still interested in coming along for the ride.

The telephone interview ran a little over a half hour and included a review of systems (current health status and medical conditions, medical history, past surgeries, recent tests, and physical abilities and limitations), and a brief description of what to expect from the evaluation appointment.

The first contact with every new provider always starts with the review of demographic information – height, weight, date of birth, and those sorts of etcetera. One of the questions posed was actually the second time I was asked it this week and the first time was by Tax Guy. You remember him from the last post as one of the stops on my whirlwind appointment tour on Monday. What could a tax return preparing team and a kidney transplant evaluation team have in common? It was “are you working?” It was actually a two parter. First “are you working” and that was easy to answer. No. The follow up was more difficult. “Why?”

It wasn’t put so bluntly by either, but both had to put something down on their forms. The US tax return includes a space for “occupation” that must be filled. Since I am not working I have three choices: unemployed, retired, disabled. I’m sort of all three. I am not being employed to anyone’s good use.  I am old enough that I could retire but not so old that I can draw on pension benefits. And I am not working due to the loss of function that was required to perform my job. Since my income is from disability benefits rather than pension benefits I am disabled rather than retired for the purpose of paying taxes. So that satisfied the accounting world.

The transplant evaluation people need to know if I am physically able to withstand the rigors of the operation and recovery. Being disabled affects not only the need for the potential transplant but the response to the transplant and it’s after effects. A kidney transplant is different from a heart, lung, or liver transplant in that for most potential kidney transplant recipients, if one does not receive the transplant there is still another option to maintain life. Dialysis. It’s not a perfect alternative but for the patient who cannot tolerate the surgery or recovery associated with a transplant it is a means of replacing not the kidney but what the kidney does. Knowing that, it is in the patient’s best interest to not subject him or her to a major surgery that poses significant and severe risks if those will be more harmful than not having the transplant.

So, to make a long story short (which I almost always cannot and once again I fear I have not), in the medical world there are basic functions that I cannot perform on my own including walking and standing without assistance, the loss of my bladder and associated parts requiring me to rely on self-catheterization for what the bladder and other parts usually do, and the ongoing and chronic progression of Wegener’s Granulomatosis and its effects. In the medical world, I am also disabled. But enough of me is still functional enough and strong enough to, on paper, appear to be able to withstand the rigors of transplant surgery and recovery, I can now progress to the evaluation stage to determine if the theoretical transfers positively to the practical.

NationalKidneyMonth

Source: National Kidney Foundation

I’d be very happy and honored if you’d stick with me for that progression. Hopefully this will be the only time that you have to make such a journey. March is World and National Kidney Month. Even though my appointment isn’t until April I’m going to take it as a good omen that I got my call this month. You can make my journey yours and not have to make one on your own, if you remember to, in the words of the National Kidney Foundation, “heart your kidneys.”

Related Post:
First Steps (Feb. 15, 2018)

 

First Steps

Michael 24 Comments

I did something last week I have never ever done in my life that may well change my life. Yes, even this old life. And even though it put things into play that will someday move very quickly, these first steps are going to plod along. I’m going to take you on this journey with me mostly because I don’t want to go and I think those here in my immediate world might need some help keeping me moving along.

Warning, this post actually has some personal information about me that I’ve never shared before. It is not recommended for the squeamish. (Or for those who might have developed any kind of respect for me especially when I reveal what a fraidy-cat I am.)

Last week my nephrologist put in referral paperwork for me to be evaluated for a kidney transplant. And I am terrified.

I’ve worked my entire adult life in health care, mostly in hospitals. I am the most rational human being when somebody asks me for an opinion, a clarification, or some information. But when it comes to me, I’m the biggest wimp in Fraidytown. I hate doctors and nurses and hospitals and medicine and machines whenever I am the focus of their attention. The only good people I see from a hospital bed are the ones who bring me food. Everybody else is an unwelcome visitor. 《Shudder!!!》Now I’m going to have to go through examinations and tests and (arrgghhhh!!!) needles to see if I get to be cut open and have more of my insides swapped out or get sent back to live a life of dialysis with its sharp objects and scary machines.

I hate dialysis. Let me see if I convey how I really feel about dialysis. I hate hate hate hate hate hate hate hate hate hate hate hate hate dialysis. And if one more person tells me “but it’s just a few hours a week” I will stab them with the needles that are thrust into me at each session.

Unlike other long term invasive procedures where an access port might be implanted under the skin to accept the needle used (say for chemotherapy), in dialysis the preferred method of access is your own vein. A surgeon cuts into your arm and brings the vessel from deep within the arm to immediately underneath the skin. Yes it is weird seeing your vein basically sitting on top of your arm and feeling it pulse with your, well, your pulse. Into this vein a dialysis nurse or technician inserts two needles about the diameter of a ball point pen, connects those to a pair of plastic tubes, and attaches those to a machine about the size, and with similar function, of a gasoline pump.

For the next three and a half hours I get to watch my blood zip around the room while it is rid of the crud we ask our kidneys to shed that mine decided to stop shedding. Add in the before and after procedures and repeat a few times a week and that’s why I hate dialysis.

But I also hate surgeries. Let me see if I can convey how much I hate surgeries. You get the idea. I won’t put you through that again. For the first 55 years of my life I had never been in a hospital as a patient. Never a broken bone, never a needed stitch, never even a false alarm brought me close to wearing a hospital gown. Then in less than four years I spent 18 months with my back end uncovered and endured four surgeries, only one of which I didn’t almost die during or shortly after. (True stuff there.) In the last couple years I’ve been back for numerous outpatient procedures and one additional full blown surgery (not death defying (whew!)). Familiarity doesn’t really breed contempt but it sure breeds a hell of a lot of fear.

Every surgery I’ve had has been complicated by a condition I live with that makes decisions for me every day. Seventeen years ago I was diagnosed with Wegener’s Granulomatosis, now known as Granulomatosis with Polyangiitis. We’re not allowed to use the W-word anymore because he was a Nazi. GPA is a rare type of vasculitis that affects less than 3 out of 100,000 people and is fatal without treatment. There is no cure but with various medications the inflammation can be abated. So we have a fatal, rare disease, without a cure, and after years of research somebody figured out the doctor who discovered it was on the wrong side in a war and shouldn’t be “honored” by having a rare, fatal disease, still without a cure, named after him.

GPA primarily affects two major organs, the lungs and (drum roll please) the kidneys. Yes, my kidney disease is not a result of the trauma of the surgeries or the cancer or hard living. It is from the Wegen– oops, from GPA. So in addition to the rest of the pending evaluation, I have to somehow demostrate that my chronic condition will not adversely affect a new (actually a used) kidney. I do that by taking my medicine and having regularly seduced blood work to measure the inflammation markers in my blood. More needles!

So, to make a long story short (I know … too late), I am about to embark on a process that will determine whether I undergo major surgery followed by a lifetime of drugs and tests, or continue with dialysis and a lifetime of big thick needles and multiple times a week treatments and general life interruptus.

And I want you to come along! Now don’t you just feel special?

 

 

 

 

 

A Cheesy Story

Michael 5 Comments

Yesterday I made a grilled cheese sandwich for lunch. For me that’s a rare treat. I used to do a grilled cheese, with or without tomato soup, almost weekly for years. And years. And even some more. Now I make one a couple of times a year.  I have a complicated relationship with grilled cheese.

Grilled cheese doesn’t hold one of those warm, fuzzy spots youth’s memory. I’m sure my mother made them but I don’t have a real recollection of them. I do remember eating grilled cheese at my elementary school cafeteria. Mostly I remember them being greasy.

I remember in college grilled cheese hitting a new level. There the cafeteria put ham or turkey with it! Who knew? And, I discovered with the help of some aluminum foil and the iron my mother insisted I have in my dorm room that I could prepare a nutritious and alcohol absorbing pre-weekend snack. Even considering the food service’s meaty additions, college level grilled cheese was more utilitarian than culinarian.

I remember making grilled cheese for my daughter. But I can’t say they were the things of lifelong memories. They were mostly things that could be thrown together quickly between her dismissal time and band practice.

Throughout my childhood, my young adulthood, and my adult me’s child’s childhood, grilled cheese was just there. It wasn’t until many years later that grilled became more than a pasteurized processed cheese product between two slices of bread.

In March of 2015, after a 4 month long hospitalization, I was admitted to rehab to learn how to walk again. For the next several weeks I went through physical therapy seven days each week working to the day that I could shuffle my own way out of there. To make a long story short, eventually the day came when my doctor said I could be discharged soon. But first, for lack of a better way to put it, I had to pass several tests. Among them I was to prepare my own hot lunch. I was given two to pick from. I don’t remember the other choice but I picked the grilled cheese sandwich.

GrilledCheeseIt took a while, but eventually I had the required pasteurized processed cheese product, two slices of bread, and a stick of butter on the table in front of me. I assembled them into a reasonable sandwich like fashion and placed it into the medium hot pan on the very hot stove. About 4 minutes later I divided the sandwich into two triangles and passed one to the occupational therapist who had been watching my poor imitation of Jeff Mauro. Three days after that I was propelling my walker to the entrance of the rehab unit where, per hospital policy, I was transferred to a wheelchair to the outside world.

Now every time I make a grilled cheese sandwich I think of those days in that unit, trading half of a sandwich for my freedom. And that’s why I now make grilled cheese only a couple if times a year. Yeah, I guess it’s not that complicated.

 

Those Who Should Know Better

Michael 14 Comments

Ok, you’re going to need a little background for this. At times I’ve written about having kidney disease and going through dialysis. You might recall other times I’ve mentioned some unspecified rare disease. And then once or twice I talked about cancer. So if you sometimes get confused I can understand that. Some of my best friends get confused regarding what’s going on with me. Apparently so are some “experts.”

For the record, it all started about 15 years ago when I was diagnosed with Wegener’s Granulomatosis. Wegener’s is an autoimmune vasculitis that affects the smallest of blood vessels and the organs they occupy – most notably the kidneys, lungs, liver, and sinuses, in my case the kidneys. There is no cure but it can sometimes be controlled with combinations of chemotherapy, immunosuppressant, and steroid medications.

After 10 years of treatment with methotrexate and prednisone, the working parts of my body decided they wanted some attention and got together to vote on who would revolt. My bladder either won or lost depending on your point of view and grew cancer.  One year and four operations later I was pronounced cancer, and bladder, free and the proud owner of rebuilt body parts fashioned from other body parts that to this point had done not much more than the jobs they were originally intended.

In the process of trying to create a recoverable environment for my post-operatively rebuilt body I had to replace the drug therapy that was so far managing to keep the ravages of the Wegener’s at bay but now not such a good choice in a body now equally desperate to keep other cancers at the same bay. While that search was underway the dastardly disease took advantage of the temporary unprotected kidneys and put them into a (hopefully but who are we kidding) temporary shut down and put me in a chair at the local dialysis clinic.

And that’s how I came to be an unplanned early retiree with a handicap placard hanging from my rear view mirror. But “who are those who should know better?” you asked. Good question.  Why, the health care “experts” of course. I’m allowed to speak of them with disdain because I was a health care expert for close to 40 years before my unplanned early retirement. And those years included years when experts in health care were the ones educated in and actually providing health care.

Recently I had to complete some paperwork for the government’s end stage kidney disease program including what led me to be on dialysis. As in the past I check “other” after not finding in among the pages of pre-selected options and entered Wegener’s. It was rejected because there is no such condition in their database of diseases. Since I have it know for sure there is but I also know for sure it’s also known by another name, Granulomatosis with Polyangiitis, I questioned the explanation. Even if you’re being paid by the letter you have to agree that Wegener’s is an easier fit for a government form. And that’s why I had always fit it. So I called the help number for some help and asked what I had done wrong. I was told we’re not allowed to call it Wegener’s anymore because that doctor who discovered it “was a Nazi you know.” So all traces of his name have been removed and it is disallowed from official use. I wouldn’t have minded if at least they would have matched the funds it took to rename everything for “official use” with perhaps some official research.

But those are government people who are used to doing stupid things. Or things stupidly. But…there actually are others who should know even better even. Those are ones who bring me my tri-weekly adventures in artificial kidney function replacement. Or dialysis if you prefer,although personally I don’t prefer dialysis.

At the corner kidney clinic they posted a new “let’s raise everyone’s spirit” poster. On it is a classic pie chart with the legend, “ONLY 7%!” It goes on to explain that “You spend only 7% of your week in dialysis. The other 148 hours are yours to do the things you like!” Really. That sounds like something that someone who doesn’t know what dialysis does to a body wrote. Not a national organization responsible for 290,000 dialysis patients. (Source: that company’s website). That 7 percent might account for the time that you are actually having your blood circulate through the machine taking up the 10 square feet next to your chair. Not the time it takes for a nurse to do a pre-dialysis assessment and then physically connect you to the machine by way of two needles about the size and diameter of a Bic pen stuck into your arm. Not the time for a nurse to physically remove you from the machine by withdrawing the Bic pen like needles from your arm, for the bleeding one would expect for two holes the size of Bic pens in your arm to stop bleeding, and then to go through a post-dialysis assessment (all about another hour). Not the time it takes to get to and from the dialysis clinic (roughly another hour for me). Not the time it takes to physically recover from the actual process (in my case 10 to 12 hours).

So if we consider the time to get on dialysis, get off dialysis, go to dialysis, and recover from dialysis I actually have 10 hours a week to do what I like. I like to sleep about 8 hours a night and I like to eat at least 2 meals a day so I’m down to around 33 hours a week I can call my own. Almost a whole day and a half! I wonder if they would notice if I would “edit” their poster at the clinic.

PieChartHD

My revised pie chart

Well now you know who those are who should know better. A government who is more concerned with what to call diseases than what to do with the people who actually have the disease and the people who are supposed to be minimizing the effect of a disease on the body but are clueless about how to minimize the effect of the disease on the person.

Boy I feel bad for the poor soul who I might run in to today and says “Hey, how ya doing?” I might actually tell him.

 

Technical Resistance

Michael 8 Comments

I try to take responsibility for myself as much as I can in all aspects that I can reach. As long as I can reach them comfortably. Including my health. So when the good folks that bring me my delightful dialysis sessions announced an opportunity to “take control of your kidney health and experience better outcomes” I jumped at the chance. Who couldn’t resist better outcomes in anything you take on? Then they started throwing around words like “empowered” and “easy” in the same paragraph even. And they got me with, “Start managing your kidney care with your Portal today and gain more time to do the things you love. Register today and Thrive On” (Emphasis not even added. They’re good.) How can I not want to take advantage of gaining more time to do the things I love? I was hooked.

You just know this is going to go wrong somewhere, don’t you? Hmm.

Looking forward to actively participating in my care, I carefully filled out the many screens of information that they requested, chose my password, and awaited the confirmation email which would contain the additional instructions for completing the registration process. In just a few seconds it came, and in just a few minutes I did what I was supposed to do. In seconds again I received another email congratulating me on successfully registering for the patient portal and was presented with a link to “log in and start actively participating in your care!” (OK, that time I added the exclamation point, but I wasn’t excited about this. Wouldn’t you be?)

I clicked, eagerly awaiting the chance to participate in my care, and attempted my first official login. In went my email address, then went in my password, then the email address and password went in to wherever they go and the little circle thing started spinning and then, low and behold (words you just don’t hear much anymore) across the screen I was presented with the message “username or password invalid.” Oh, poo! No problem. In my excitedness I probably hit a wrong key so I re-entered the username which is my email address so I know that was correct, and then, this time more carefully, my password. Almost always when denied access it’s because I incorrectly enter the password which makes sense since they never show you your password (unless it happens to be ******* and you just have to remember how many *s). But no, again that didn’t work so I gave one more try and one more time I got the same frustrating message.

I selected the link on the page for technical support and sent them an email detailing my inability to log into the patient portal (and thus my unfortunate delay in participating in my care!) and sat back to await their response. A few minutes later I saw the little envelope icon pop up at the top of the screen and I anxiously opened my email to just as anxiously read their reply, get back on track, and start participating in my care. Well imagine my disappointment when I scrolled the inbox items and saw, “Undeliverable.” Instead of the anxiously awaited reply I had a message wherein the little emailman politely explained to me that my desperate plea for help could not be sent because the addressee “wasn’t found or doesn’t exist at the destination server” and I should check to make sure I entered the address correctly, contact the intended recipient by phone, or several other options that involved things like checking licenses and permissions and other things that normal non-computer savvy people (and probably some of them, too) have no idea what any of that means. Disappointment does not begin to describe what I was feeling. “ARRRGH!” OF COURSE THE DAMN ADDRESS EXISTS. ALL I DID WAS PUSH THEIR DANM BUTTON ON THEIR DAMN WEBSITE! DAMN MORONS!” I said to myself. Calmly.

Maybe it’s just a password problem and I actually mistyped when I was selecting it. It’s possible. If I can incorrectly enter a password when trying to log onto a site I can certainly mistyped the letters, characters, numbers, and case control when first selecting the password. Of course that would mean that I would have had to make the same mistake twice since, once on the first selection entry and once on the confirmation entry, but hey, it could happen. Yeah, right.

So I attempted to log on again, knowing it would reject the login information but also knowing I would be presented with the inevitable “Forgot your password?” link. So I did. And I was. And I clicked. And in a few seconds I received another email with another link to reenter my password. So I clicked. And I reentered. Carefully. Both times. The screen blanked taking all my information again to wherever the little electrons go when they discuss these things and in less than a second I got another email! This is getting exciting. Again anxiously (though not quite as anxiously as I had been earlier), I opened the email and read the message congratulating me on successfully changing my password with a new link to log on and “start participating in my care.” (No emphasis added. By this time I was getting emphatically worn out.) Again I clicked. And again I entered username AKA email address and password AKA, uhh, password. And again I got…”username or password invalid.”

Oy.

(If you read Monday’s post and are wondering if this was what I couldn’t remember…..well, the answer to that is no. But this one is such a great story I couldn’t wait to share it. That and if I did wait I knew I would have forgotten about it. But don’t worry. I still have the sticky note stuck right there on the monitor (see?) and I’ll be writing all about it next time. Unless something else comes up between now and then. But it’s OK. There’s lots of sticky on that note. It’s not going anywhere.)

(Oh and, do you think I use too many parentheses?)

 

It Just Happened

Michael Leave a comment

You wouldn’t think Dr. Seuss would come up when a 60 year old is looking back on the year almost gone by. Being just out of the hospital for but a few days I actually haven’t gotten all the way home yet. Since I live alone and am still a little while away from taking care of myself with a greater chance that I end a day in the emergency room rather than the bedroom, my sisters have opened their house to me so I can be pampered in the style an only son should be pampered…even at 60. But I digress. I think.

I was sitting alone in a corner pondering how I got to this place in space and time while the younger of the two siblings, the one still working the poor dear, was modeling the many holiday themed hats she was planning on bringing to work with her on the next day. You know the kind you see this time of year. The baseball hat with antlers that reads “Oh Deer,” or the one decked out in gingerbread cookies saying “Oh Snap!” As she dug deeper into her bag of headwear I got a greater memory sense of a story about a boy with a never-ending collection of hats.

It didn’t take too much more reflection that I recalled the hats indeed did end. The young man was Bartholomew Cubbins and the tale was Dr. Seuss’s “The 500 Hats of Bartholomew Cubbins.” If you don’t remember it, it is the story of a young boy who cannot bare his head to the king. Every time he removes a hat another appears in its place. Finally at the 500th reveal he doffs the yet finest example and presents the highly decorated hat to the king and is rewarded with a bag of gold.

So, how do we get from a child’s story from the 1930s to my consideration of all that happened to me this year? The last line of the story tells the tale. Though they could never explain how it happened, “They could only say is just ‘happened to happen’ and was not very likely to happen again.”

And isn’t that really the tale we are all told?

That’s what I think. Really. How ’bout you?

Shower Power

Michael Leave a comment

Yesterday I had more fun naked than I’ve had in years. I took a shower. Talk about good, clean fun!

To many of us, pretending to be the recipient of an automatic car wash might not seem to be epitome of carnal satisfaction. But I had just been released from an 8 day stay at one of the cleanest places on Earth, a hospital. And boy did I feel grungy.

I am not at all unfamiliar with America’s health care system. For almost 40 years it provided me my pocket change as I toiled on the provider side and for almost 4 years it provided me a place to hang out and spend said hard-earn pockrt change on the patient side. I am very aware, and very appreciated of the advances it has made. Technically, that is. Humanly, maybe not so much. Consider the following.

With modern imaging they can see tiny slivers of our insides down to the 32nd of an inch in detail almost better than lifelike. They can see with sound. My surgeon worked to delicately open my abdominal cavity, clean and repair the offending parts, and then put me back together using a camera through a couple of holes not much bigger than one made by a flu shot needle. Yet when all of that was done I was left to recover in a room with a TV the quality almost as good as a 1960 portable set with rabbit ears wrapped in aluminum foil. (Ask your granfather. He’ll explain.)

I was attached with the necessary wiring so my pulse, heart beat, breathing, and temperature could be monitored from a station 80 feet away. But the aforementioned television was controlled by a remote that contained only Power, Volume Up/Down, and Channel Up/Down buttons. This in a housing that also held the Nurse Call button and, for some reason, a button to set the room lights to three different brightness levels. All that looked much too alike.

And of course, unlike even the smallest movement towards improvement the silly remote has provided to the patient since I started my career those years ago, the one thing that hasn’t changed at all is the hospital gown. The famous see-through garment with non-sleeves that nobody can get their arms into, a neck fastener reminiscent of a backward bow tie, and all in an indecent package that only makes it 80% of the way around your body. And of course the remaining 20% is not on the side.

Yet given all this, on my return I was not overcome with the urge to finger my high tech remote, triggering the high def TV and the surround sound, grateful for work done to keep me going for another 4 to 40 years. It was to strip off those clothes that completely covered me and bask in joy of hundreds of gallon of hot water pouring over me, drenching every pore, soaking every personal nook and cranny. Thank all that is holy that one imorovement we’ve never had to endure is the restorative power of water.

It was enough to make me want a cigarette.

That’s what I think. Really. How ’bout you?

Keeping On Keeping On

Michael Leave a comment

The Urban Dictionary defines Keep on Keeping On as “The act of doing what you have been doing but an encouragement to do it more.” I get to keep on-ing tomorrow as I get to undergo yet another surgery.

It won’t be so bad. At least this time isn’t a matter of life or death but rather one of comfort and convenience. And with any luck once we’re all done it will be more convenient for me to be comfortable.

I’m sure I’ve said this before but before I began to have this current round of medical issues I had made it through some 55 odd years without ever having to be in the hospital other than while I was at work. Then as suddenly as all that I was on the other side of the bedsheets. Now, four years and as many surgeries later and I’m still around to write about it. Is that great or what?

I’ll spend the rest of today brushing up on the patient version of improving my bedside manner, eat as much as I can until that famous “nothing by mouth after midnight,” and spend this evening at the hockey game while I keep telling myself how fortunate I am to be able to well enough to go to a hockey game.

Wish me luck, please say an extra prayer, and I’ll be sure to tell you all about it sometime next week. While I keep telling myself how fortunate I’ll be to be well enough to tell you all about it.

That’s what I think. Really. How ‘bout you?

 

 

And now, the start of the story…

Michael 4 Comments

Let me start right out of the gate and say this post is going to be a little different. Not much humor, useless trivia, or sarcasm in this one. Depending on how long you’ve been following this story you might know that a couple of years ago life was interrupted by a bout with cancer. It seems that for so many today, cancer is just an interruption. Cancer strikes this celebrity, that athlete, or this actor and they recover, return to their former lives with an even greater performance, voice, or achievement.  For me, cancer was maybe more than an interruption. But one thing it was for sure, it was inevitable.

Fifteen years ago I was diagnosed with one of the rarer immune system abnormalities. Not one of the many rheumatoid conditions that today have so many wonderful drugs advertised on TV so you can get back to golf, fancy restaurants, delightful carnivals, volunteer work, or unashamed workouts from high energy spin classes to meditative yoga. Nope, the one I got wasn’t even in researchers’ microscopes looking for a sometime-in-the-future remedy. Treatment for me meant high doses of prednisone and immunosuppressive agents once used in the early fight against cancer. I knew from the start that over several years the treatments themselves could cause problems like renal failure, heart failure, liver failure, or the cancers they were initially developed to treat. I also knew from the start that left untreated, over several months my condition could cause problems like death and dying.

I chose Door Number One.

Then three years ago I found out I had cancer. I knew that I most likely wouldn’t come out of it with an even greater performance, voice, or achievement. For me it wasn’t that one thing I had to overcome. It was just another thing in the yet increasing number of things that had happened, and will continue to happen to me.

Over the years I’ve had so many pieces of me removed, replaced, or rebuilt that I could give Lee Majors a strong run for the Six Million Dollar Man title role.  Over the years it’s gotten harder to say if the latest ache, pain, or procedure is due to the condition or the cure. Last week I spent a day in an outpatient surgery unit having an artery and vein in my right arm tied together to form an entry and exit site necessary for dialysis. It was inevitable and got me thinking about that cancer diagnosis from three years ago.

By then I had already been given about a dozen extra years since choosing Door Number One. In those 12 years I had gotten to see my daughter graduate high school and college and discovered the difference between being a father and being Dad. I had met new people who I would never forget who before I could never have ever imagined. I had earned national recognition in a field that itself is rarely recognized. I had earned about a million dollars, spent about a million and a half, and probably would do it the same way all over again.

The more I think of it, the more I think how lucky I am to have gotten to that cancer diagnosis. I got to hear a doctor tell me that I had a potentially terminal condition long before I had cancer. By the time I heard a doctor tell me “You have cancer,” (though more delicately than that) I had 12 years that I wouldn’t have had if I had chosen the path that didn’t include the possibility that treatment might cause cancer.

I wish everyone who ever has to hear a doctor say “You have cancer,” (hopefully more delicately than that) all the best things that life has in store for you. And although I can’t argue that having cancer is ever one of the best things that life has in store for you, there really are some things worse than having cancer. Sometimes, even not having it can be worse.

That’s what I think. Really. How ‘bout you?

 

The Meaning of Life – No, I’m Not Kidding!

Michael Leave a comment

Some day I have to figure out how my mind works. Not my brain. I have that figure out. Seven years of school better have taught me something. No, what I can’t figure out is how my mind works. That unfathomable piece of consciousness that works on its own stream and might or might not let us in.

Monday I woke up with a sore back. Check that. I woke up with a back that hurt like all the gods on Olympus and in the Coliseum (or wherever the Roman gods lived) were mad at it. I called my doctor; he worked me into his schedule, poked, prodded, and ordered some x-rays and gave me some muscle relaxers. Monday night I took some muscle relaxers and Tuesday woke up and did my normal morning stuff, sore but not in outright pain. Tuesday night I took more muscle relaxers and Wednesday woke up even less sore and certain I wasted my doctor’s time on Monday. Wednesday afternoon he called and told me I have three compression fractures in my spine. All of a sudden I can’t sit still I’m in such pain.

Normally I walk with a cane. I’m not too weak to walk but if I don’t use some support I wobble. In fact, without it I look for all the world like I’ve had one bourbon too many. (Yes, I used to also believe that was a contradiction in terms but you really can have one too many. Try not to spread it around.) Every morning I walk a couple of miles and if it’s not raining I go to the pool for an hour or so. To get to my pool I go out the door, through the breezeway, across the courtyard and up a flight of stairs. Since the stairs have a railing and to get to them is a short walk I usually leave my cane behind. Yesterday, before I found out that my back is living on borrowed time, on the way in from the pool I detoured down the front walk to the mailbox. The mailman was just dropping off the day’s haul but he hung around long enough to comment that it looked a little early to be “hitting it” (aka “the bottle”). I immediately felt bad to be out in public like that. It was only after he was pulling away for the next mailbox that I realized how little I had to be feeling foolish of.

Why do we put so much stock into what others say? Nothing changed in my back between Tuesday and Wednesday other than the doctor confirming what other doctors had already told me several years ago. I hadn’t removed the cap from the Marker’s Mark for a couple of weeks when I fortified the glaze for a steak I put on the grill. Yet I was willing to change how I felt, indeed how I was, based on what others – one supposedly learned and one supposedly a federal employee – had to say. (How many people work for the federal government? About half of them.) (Sorry, I couldn’t resist.)

Quite some time ago I found this, printed it, framed, it and took it to heart. Since then I’ve Lifechanged. I got an incurable condition. I got cancer. I beat cancer. I still have an incurable condition. Through it all I see this every morning. I have to. It’s on the wall above my toilet tank. It’s a great place for a bit of inspiration. At first I misinterpreted it to mean that if we want to live life to its fullest we have to physically beat the odds. We have to literally skid in sideways. Not so! As long as we don’t give in we won’t give up. I sort of like that expression. Maybe I’ll hang that on the wall too.

As long as you don’t give in, you won’t give up.

That’s what I think. Really. How ‘bout you?

Life should not be a journey to the grave with the intention
of arriving in an attractive and well preserved body,
but rather to skid in sideways, chocolate in one hand, martini in the other,
thoroughly used up, totally worn out and screaming
“Woo hoo, what a ride!”