Days and Nights

I'm not sure what's worse, the late nights or the early mornings. When I can't sleep, I lie in bed and think until my brain hurts. And when I wake up very early, I spend time wondering what horrors the coming day will drop on my head. Our lives here have really fallen into disarray, and I think about when times were good. Then I try to figure out what the hell went wrong. I pretty much know the answers, but I think about it all anyway. If I were a single man, it would be so much easier on my brain. I'd simply throw in the towel, pack up and walk away from it all. Let the bank have the house, file bankruptcy and be done with it.

But the kids are part of my life. I can't just uproot their lives. This house is their home. My youngest was born here. I want their lives to be stable. For 30 years, I did so well in my career. I made good money, and when we started a family, I was at the top of my game. I was a good provider. We didn't spoil the kids, but we did give them a good life. We did some great vacations, had some wonderful Christmases. We did send them to parochial school, not for status, but for the religious education that their Mom and I both grew up with. It was funny, the vehicle I drove was a 1997 Ford Explorer that I won in a raffle. As the family grew, we added a second vehicle: the dreaded minivan!

Life was good.

Then it wasn't so good.

Technology advances basically put me out of business. Injuries I suffered sort of accelerated the process. Everyone knew that if you ever took disability time, it wasn't long before Merrill Lynch would show you to the door. It was sort of an unwritten rule. One guy was out of work for about four months having had surgery to remove part of his intestines, which were damaged by Crohn's disease. He came back to work, but within six months or so, he was "laid off". Another colleague had a few months out because he had a toe removed as a result of diabetes. Within a year, he, too was "laid off". I destroyed my knees and was out for a little more than six months. I returned to work in February of 2007, and on May 24th, 2007, I got my pink slip.

I did see the writing on the wall in my own case. I did a lot of saving in the last two years of my career with Merrill Lynch. When I got the gate, I had 2 1/2 years' salary in the bank, just as the experts advised. I took exams for three different securities licenses, in hopes of transferring to another division within the firm. I was studying for a fourth license exam when the axe fell, and in a minor show of decency, Merrill agreed to sponsor me for that exam. (You need a securities firm to do that for you).

It was all for naught, however. The door opened, and out I went. I immediately began applying for jobs within the industry, and got nowhere. While you never have to supply your age or date of birth in those applications, 30 years at Merrill listed on my resume made it easy to figure out that I wasn't  25 years old. Firms, these days, don't want 47 year olds on the payroll. They could hire two young people for what they figured it'd be asking for, plus the benefits, health insurance, etc., for those youngsters would be a lot cheaper.

So, no luck getting hired. In 2008, I went into business for myself, selling life insurance as well as designing investment portfolios for retirement plans, etc. I was doing pretty well, but between paying a mortgage and paying for my own health insurance (Horizon Blue Cross/Blue Shield was taking $2250 per month) I was starting each month $5000 in the hole. That wasn't going to work. I did stay with it for 3 years until I was offered my current job. I now pay $65 per week for outstanding health insurance. Huge relief.

But even with great insurance, I'm laying out $300-$500 each week for prescriptions, doctor co-pays, etc. (My daughter is ill at the moment and her medications are nearly as expensive as mine). We have about $200,000 in medical bills from the time I was insured privately. My wife had two surgeries which the insurance company pre-approved but then reneged on paying. The same for me; I had surgery and it was pre-approved but then reneged upon. Always read the fine print, folks!

Anyway, I want this to be the last post of this kind. I know it's got to be boring. If you're still reading at this point, thank you for staying with it. I promise to be a little more positive, to inject some humor into this journal of mine. I'll try harder to make it more interesting so it's worth your while to come here and read.

Thanks for tuning in. The best is yet to come.

Hi Brandi.

Catching Up

I

I'm writing today from my bed in Jersey Shore University Medical Center. This is my sixth hospitalization since January, divided between acute bronchitis twice, and pneumonia four times. My immune is slowly but surely building up, and I keep getting over Lung Wars a little more quickly each time.

I watched the tv show "House, MD" religiously during its run, so when the doctors here in real life discuss or mention things, I pretend I know what they're talking about. Like now we're doing IVIG. I don't know what it is, I've just heard the term a few times. It's scheduled four more times over the next four months, and then I should be able to resume playing Superman. 

Or at least carrying my backpack.

The funny thing is, since January, I've been booked into hospital for lots of fun things. I keep forgetting to mention that the Multiple Myeloma is in remission. So this other stuff is just me getting the rest of my body cleaned up, like when the oil change is finished, they give you the coupon for the free car wash.

I'm very grateful to be in this position. These doctors teamed up to kick butt against a very nasty disease. This isn't a battle that gets won too often. I can put up with a couple of bouts of pneumonia or bronchitis until everything is in order.

62 Months: Another Summer

Today marks the official start of Summer. I think it's nice that it happens on a Saturday this year. That allows a lot of people to get a head start on the enjoyment.

I'm really intent on making it a great summer this year. My kids are at that age where hanging out with Dad isn't the most exciting part of the day, and soon enough they'll have plenty of plans of their own. Gotta make it count!
We're going to start off with a visit from my parents, along with my Uncle Fred and my cousin Jack. Should be a nice day all around, and I know at some point, I'll drop that four-letter word. F-O-O-D.
Soon I will be back to work. Not something people typically get excited over, but I work at an awesome place, with incredible co-workers, so it is a great thing for me. My other job will be enjoying summer. BBQ and the like. I'll try, of course, to include activities that don't revolve around chewing. Those muscles are well developed, trust me. Last winter I discovered a very inexpensive bocce set. Even in my cripply state, I can manage a few rounds of bocce ball.
But the summer goal is: if and when the doctors ok it, I will ride a bicycle. Now THAT is something to get excited about.

Stay tuned…

62 Months: The Journey Continues

One of the problems that I had when I came home was that I was assigned physical therapy exercises to do. I was 14 years old wearing a huge plaster cast, once the cast came off the trouble really began. I had to use a small dumbbell on the edge of the couch or chair with my arm on the end. I had to flex and extend the arm hundred times a day.

I had no interest in doing anything like this. My mother was pulling her hair out because every day it was the same routine. Normally, it takes less time to do what you're supposed to do, then it does to spend the time arguing about not doing it. I, of course, chose to argue day in and day out. I did the bare minimum, and to this day I pay the price for that because my arm is crooked. My friends even have a nickname for my arm: they call it "The Crook".

It was summertime. Another treat resulting from the elbow injury was the lengthy scar that ran down the back of my arm. I had something called keloid. The scar was long, raised and bright red. And it was raised and thick. So in addition to my arm being a crooked mess, I had a huge centipede taking up residence.

Countless times I was asked what I did to my arm. Eventually, I began coming up with clever answers. Shark attack, ( that one got a lot of attention ), chain saw accident, knife fight. Hey, to me it was fun watching people's reactions to the tall tales.

No one said I was a good kid.

62 Months: The Journey to Today

My life has always been a big mess. I'm not the guy you want handling your fine China. I became a human wrecking ball at about 18 months old, and it's been just delightful since. Yes, at the ripe old age of 18 months, I stood up in my carriage flipped the whole thing over, and ripped a hole in my lip.

I continued to torture my parents with stunts and things like that. I had a neighbor kid plop my head open with a rock, I swallowed a fishbone and it got lodged in my tonsil. And that was before I was even 10 years old. I gave the folks a few years off from physically injuring myself, but during that time, I tried my hardest to become the official "Class Clown". There were some interesting report cars from school those years.

In January 1974, I resumed my wrecking-ball activities. I chose to run during an ice storm. I took a nice flip off of a NY City curb and shatter my right elbow. That cost me two surgeries and a six week hospital stay. These days, my visit would have been a couple of days, but nope. I created quite the hardship for my parents, who kept me company every day, without fail. They'd rotate Vaisya, because I had four siblings at home, including a two year old brother. They never complained, although they probably wanted to have my brain examined. The elbow surgery was as successful as possible with what doctors had available at the time. A week before release, I added some more fun to the party by developing a staph infection in the surgical site. I met a boy my age who'd tried to castrate himself poking a whole in his belt with a knife. The two of us took to racing wheelchairs during late-night hours. ( I propelled myself with my feet ) The nurses were at first quite annoyed, but I think eventually they took to placing bets on us.

Once I was released, we learned that I'd grown considerably, which meant my parents had to replace my clothes. It was bizarre how much I'd grown in that short time. I'm surprised my folks didn't give me up for adoption. And yet, the fun continued.

And this is to be continued...

62 Months: Victories and Milestones

Well look at that...I'm improving.
The doctors removed my PICC line. No more home IV. They've also begun weaning me off the drug Medrol. I managed to gain a couple of pounds, too. The weight part astounds me because I eat like three people. I never stop chowing down. I stopped at McDonald's on my way to Burger King one night. And recently I ate five slices of pizza ( real pizza, full-sized slices ) and then had a cannoli.

Another huge milestone was returning to work, which I did one week ago. My company is very good to me. They have me working in an area where I can be productive but not be subjected to any heavy lifting. I have a chair provided for me ( I work for a supermarket chain, so chairs are not typically offered or used ) so when my old butt runs out of energy, I can flop on the seat and recharge. My hemoglobin and red cells are still low, so I get out of breath frequently. But I'm doing it. As a matter of fact, yesterday I ran my department for the first time since I got back.

The after-effects of the chemotherapy have left me with a bunch of neurological problems. I'm being treated now by a very capable, reputable doctor, so I expect some answers and relief soon. I walk like my legs are made of rubber, and I've had a few falls. I make a lot of noise when I fall, so I try not to do that too often. I walked up on an elderly woman who was using a walker. I was using a cane at the moment, and I asked her if she wanted to race.

I feel ok. OK is good.

62 Months: Fear

Two weeks ago at my last consultation, the test came back showing at the myeloma had retreated. Here I am in horrible shape. The Doctor laughed, and said, "we have the cancer under control, now we have to fix the cures"

I'm on a medicine called Medrol, it's a steroid but it doesn't build strength. In fact, it has to be carefully administered because it saps muscle strength. I can barely walk at this point. I have a cane and I always walk with someone. I have two steps in front of my house and they might as will be a mountain. I have fallen numerous times, luckily I was able to control the falls not injure myself. I am pretty sure that the neighbors think I'm a drunk. I have been taking short drives in the car to get back in practice. But simply getting out of the chair is a challenge. They are weaning me off of the Medrol.

Tuesday I got a good scare. I had a ultrasound, they called it a Doppler test. They discovered three blood clots, which explained this swelling in my legs. My feet are about twice the size they were normally. There were two clots below my knee, which they explained are minor and not really a problem. But they found one in the left leg above the knee and they said that is cause for concern. They sent me home with a box of injectable medicine that I have to do once a day. We want to dissolve the clot before it decides to move. If this clot takes off it could very well and up in my lung and that would be a problem.

It's kind of a strange situation. They don't know if I should sit stand walk run. I'm sticking with minor exercise, eating right and keeping my fingers crossed.

The cancer never scared me, the pneumonia didn't scare me, the flu didn't scare me, but this blood clot has me shaking in my shoes.

I am scared.