Tag Cancer

Dance of the Year

Michael 6 Comments

Happy Not Really Presidents Day. Yeah, yeah, I sound like a broken record (under 30s ask a real adult) but there is no such holiday. Never was. Should never will be. I guess the United Kingdom celebrates the Queen’s birthday but does anybody else set aside time for the collective past chief executives whoever they may be. Neither do we. Today is Washington’s Birthday (although it really isn’t, that’s Feb. 22) because he did a bunch of stuff that got this USA started. The other 44 are just hangers on.

If you want a good discount on a car, mattress, or living room furniture, today is your day. If you want to relive my in-depth look at the weirdos who have occupied 1600 Pennsylvania Ave., check out last year’s post. If you want to really celebrate something special, keep reading.

Today is, in addition to a federal holiday, the day after Thon. Thon is the Penn State IFC/Panhellenic Dance Marathon, a year-long fund raising effort to combat childhood cancer. The money raised is donated to Four Diamonds at Penn State Children’s Hospital. How much? Since 1977 THON has raised more than $157 million for Four Diamonds. The Four Diamonds fund offsets the costs of the pediatric cancer care not covered by insurance and provides other services such as specialty care for the mental, emotional, and spiritual needs of the children and their families. Research and medical support are also funded by Four Diamonds.

Maybe today should be a federal holiday because of Thon and other student groups across the country. Surely there are other similarly focused almost adults, but Thon is the poster child for these poster children. The largest student run philanthropic organization in the world, Thon has over 16,500 student volunteers participating in the year-long effort and more than 700 dancers took to the floor for this weekend’s 46 hour marathon.

For years, starting every fall, “canners” would fan out across Pennsylvania and beyond collecting coins at business entrances, sporting and cultural events, and traffic intersections. Mini-Thons, alumni, business partners, and “Friends of Thon” have helped but the physical canvassing raised a huge percentage of the total donations. This year was the first when due to safety concerns, canning was officially banned. Instead crowd funding and THONvelopes replaced the corner canners presence. And still they added to the “over $157 million.”

THON2019They’ve raised over $157 million. How much more? Add another $10,621,683.76 from this weekend. That’s short of the $13.4 million record from 2013, and far far less than say the $700 million donated to St. Jude’s Hospital last year but Thon’s overhead is probably a little less also. And you can’t argue that is still quite a total for a bunch of kids just helping out another bunch of kids.

So if you have a few minutes between mattress shopping and you’d like to justify your day off with something worthy of celebration to celebrate, now you do.

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Photo by Patrick Spurlock | Onward State

It’s the Most Unwonderful Time of the Year

Michael 12 Comments

It’s time for my annual “Woe is me” party. I figure I have lots of reasons to celebrate my misfortunes. A rare weird disease, cancer, blood clots, lack of mobility, dialysis. Too much plaid in my wardrobe. The list goes on. But those are everyday disasters and things that almost everybody else will go through. Maybe not all of them or the ones you someday experience not all at once. But these are the things people deal with. And I deal with them pretty well. I have good family and good friends and a good medical team to help me along.

But all the help and support from family members and dialysis nurses won’t change the fact that on Wednesday I’m going to wake up alone. There will be no card taped to the bathroom mirror, they’ll be no second place setting at breakfast (and that’s a shame because I’m planning on a traditional Eggs Benedict with my own Hollandaise), there’ll be no impromptu dancing in the living room in front of an open window for the world to see that old people can still love.

I suppose old people still love. I see them. I know some who are seemingly doing all the right things. Maybe that’s it. Seemingly. In my experience, getting old did not help in the still loving department.

Broken_Heart_Pose_(1)First there was the ex. Forgive me for being so old fashioned here but by “ex” I shouldn’t have to explain ex what. It kills me when people refer to someone they dated three times as their ex. That’s a “guy or girl I dated.” Or someone they saw for almost a year. That’s an “old boyfriend.” By the way there is no “old girlfriend.” Just someone “I used to spend time with” accompanied by a wistful look into nowhere. But no, these people aren’t exes. There has to be something that existed to be exed out of. To me “ex” will always and only be an ex-wife. Or husband depending on your point of view.

Anyway, first there was the ex. We weren’t that bad when we were. We had our moments but then we also had our moments. It was hard getting together in the 70’s. Things were expensive. Money was expensive. It was not a time of destination weddings and yearly two week tropical vacations, new cars, new houses, or new tires no matter how much the mechanic whined they weren’t going to pass inspection next time. We’ll worry about it then. And that was pretty much how we got though out first 10 years. Worrying about it then. And then by the next 10 years we didn’t have to worry so much. Cars were newer. Houses were big enough that the daughter could have her own room with lots of space to spare. Plans were made and met and new ones thought up. One plan that caught us off guard was that I planned on turning 40 and she didn’t. So when I did and she should have soon followed there was lots of holding back and plans changed. Eventually my 40 turned 45 and her never ending 39 regressed to 30 and the 15 years difference was too much for her.

comforting__hearttle_6__by_domobfdi-d7186dwYears went by and I would meet a somebody now and then in between being dad and homemaker. Single parenting isn’t much fun for the male set either in case you’re wondering. Eventually a new she entered and if she wasn’t perfect, she was just right. Right enough that space could be made for her. We danced and swam and festivaled. We visited places from northern falls to tropical islands and enjoyed time in farm markets and art studios. Plans were made and met and new ones thought up. One plan that caught us off guard was that I planned on getting cancer (well, part of me did but didn’t bother to tell the rest of me until it was too late) and she planned on me always being the same. So when I did and the cure necessitated removing some parts of me, and some of those parts were the parts that impart a certain amount of masculinity to maleness, and plans changed. We struggled a bit until the phone call that spoke of things wanted and things able and they weren’t the same things. And then sometime in our 8th, maybe 9th, could have been 10th year, the new she began to become someone I used to spend time with.

So twice bitten I’ve had no will to risk adding even a girl I used to date to my record. The desire, yes. The will, no. I’d love to have someone warm to hold close at night or to slog through mud tracked roads leading to the demonstration area at the maple festival. Someone to see the old ships of New England and the old houses of the Old Country. Or someone to sit next to and read a book for the fourteenth time and for the thirteenth time to explain that it’s OK to reread a book. Or someone to share an Eggs Benedict then dance with in front of a window

Nope, not the most wonderful week of the year for me. But that’s ok. There are 51 others to amuse me. I’ll be back to normal sometime next week.

 

Images by Picquery

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.

 

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?

 

Weight Not, Want Not

Michael Leave a comment

Three years ago I said to myself, “Self,” I said, “you have got to lose some weight!” I was easily 50 pounds overweight. I not only was putting on pounds, I was losing height. The inches I lost going up and down found their way to my middle and went round and round. I recall when I was told I had to start getting in shape my stock answer was “round is a shape!” But truth be told, I felt pretty bad. I was always short of breath, I took elevators to go one floor (down, even), and my favorite place to go was the airport because there were people movers all over. If I had to walk all that way on my own I’d just sit and wait a while and eventually my breathing and heart rate would get back close to normal.

I was certain I could lose weight. I watched TV. I saw the ads for pills, exercise CDs, diet books, and portable gym equipment. In just 3 weeks, 6 weeks, 30 days, or 90 days I too could lose inches and pounds. I was ready to take all the “before” pictures if I could just bend over far enough to get the camera case off the floor. And if pills, exercise, and diet didn’t work – or didn’t get started – I had a secret weapon. I would monitor my portions and eat less. And I did. I only had one rack of ribs for dinner, half a chicken at one meal, only two appetizers even if the special was for three, and I always shared dessert. I rarely had soft drinks unless they were mixed with bourbon and I even started drinking light beer for a little while. Even with all that, I still didn’t lose weight. In fact, I gained! By the time that year was over I was exactly 100 pounds heavier than what the height/weight charts said I should have weighed.

Two years ago I said to myself, “Self,” I said, “this would be a whole lot easier if I wasn’t so fat.” The surgeon agreed with me but said I really needed to do this. So during the procedure to remove the cancer, all or part of a couple organs were removed. And finally I lost some weight. Since then I’ve had three more surgeries, five more hospitalizations, several outpatient procedures, and quite a bit more weight loss.

I am 90 pounds lighter than I was three years ago, only 10 pounds away from a goal I would have otherwise been proud to have reached. I still get short of breath and I still take elevators for just one floor. That’s because I can’t walk a flight of steps without becoming over-exerted. I’d like to take an “after” picture but when I get down to the floor I have to have somebody help me back up. Eventually the stamina will return, the flexibility will come back, and those last 10 pounds will disappear.

All I have to do is sit around and wait a while.

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

If Not For Bad Luck

Michael Leave a comment

A recent Reuters news article reported that 65% of cancers can be attributed to physiological bad luck.  Some 22 of 31 identified cancer types were traced to unexplained, random cell mutations.  These cancers included leukemia, pancreatic cancer, and ovarian and testicular cancer.  The other nine types which included lung, skin, and colorectal cancers, could be attributed to environmental or hereditary changes.  One of the researchers whose work was examined for the article was quoted saying the real reason that people get cancer in many cases, “is that person was unlucky. It’s losing the lottery.”

Well, that’s a relief.  I thought I had done something wrong to earn my cancer.  Fortunately now I know that it was just plain old bad luck.  It was probably bad luck that I had a surgical wound open up after the operation to remove that fluke.  That was compounded by more bad luck when the infection popped up.  And let’s not forget the bad luck of the revisions to the original surgery that had to be performed, all of that keeping me in the hospital some six months out of the past eighteen.

And it was during those same eighteen months that the company I was contracted to sold off the facility I was assigned to dropping me into the ranks of the unemployed as well as those of the unlucky.  The unlucky circumstances thus continued when all of the treatments and therapies though quite effective in keeping me alive couldn’t keep me with enough stamina to work a full business day so I continue to be unemployed while searching for an employer compassionate enough to understand that someone who has been extremely effective can still be so while working only half days at a time.

Of course there was the additional unluckiness of not being a child, a single mom, a returning veteran, a celebrity, a politician, or a television or movie character that may or may not be based on an actual person.  Nobody was submitting my name to any foundation to cover the expenses of a trip to Pisa or to Punxsutawney while arranging for free housekeeping, a new suit, and an interview on the late show thus garnering enough new found publicity that the previous paragraph’s ill fortune was quite handsomely negated.

So now I spend most days filling out insurance forms and sweepstakes entries with about the same odds of success, job applications with even longer odds, or call an old colleague to see if he or she has any spare hours or opportunities with the longest odds of them all.  On the bright side, I have been catching up with my reading and writing.  Seriously, on the bright side…come on, seriously a bright side?

Imagine playing the lottery with a 65% chance of hitting.  Oh wait, the researcher said that was like losing the lottery.  I manage to do that every week, twice a week.  That is ok.  If I hit the lottery I’d probably just squander the winnings on things like food and mortgage payments.  What a relief that choice doesn’t have to be made!  And here I thought I was just plain old unlucky.

Sorry, not every post is going to be up-beat.  Just real.

Now, that’s what I think. Really. How ‘bout you?

 

Confessions of a Lottery Winner

Michael 1 Comment

Before the numbers are revealed everyone says “If I hit it big I’m never working another day in my life.”  After the numbers are drawn and someone actually hits it big, at the interview on television he or she says, “It won’t change me at all.  I’ll still live in the same house, drive the same car, work at the same job.”  After the numbers are drawn and someone actually hits it big, on the phone with his or her boss, he or she says, “Take your job and shove it!”

We don’t know how we’d react.  The biggest hit we can remember is He hit a state drawing for $40.  That allowed him to shove his job for about four minutes.  But, He has had some other wins.  Not counting the occasional silent auction or charitable raffle with a top prize of a questionable line drawing or an equally questionable wine vintage, he’s hit it big at casinos and racetracks even if the PowerBall, MegaMillions, and state offerings have let him down.

Big might be just a bit of an exaggeration.  There was one night at a local harness track when he had a hard time picking a loser.  But since most of the bets were of the pedestrian $2 variety and most of the winners were favorites, the winnings didn’t tally very high.  And there was one trip to Las Vegas that ended up as a break even trip.  For him, breaking even isn’t far from winning.  But then when one seeks out nickel slot machines and $2 tables, winning isn’t far from breaking even.

So when it comes to games of chance, you could say that he is pretty lucky.  But his luckiest was last summer when he really hit it big.  It was just about a year ago when he was in a hospital bed and his doctor came in and said, “All the tests are back and there is no cancer.  We got it all.”

Since then there have been other days in the hospital.  There have been lots of pills and tests and scans.  But no cancer.  There have been days at work when he’d rather have been doing anything but be at work.  There have been days off where he’d have rather been doing something more constructive.  But there have been days.  Days that might not have been.

So if every now and then we miss a Monday or a Thursday post (or both), or it seems like one was particularly short or another somewhat rambling, it might have been one of those days.

But at least there are days.  Even if there isn’t a big lottery winner, having the day is winning enough.

Now, that’s what we think. Really. How ‘bout you?