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.

62 Months: Loneliness

As much as they like to  people just can't stay and keep you company all the time. Weekends are okay, but during the week people have to get on with their lives. I'm pretty restricted to what I can do or where I can go because I'm still subject to infections.

When I do go out, I have to wear a surgical mask. Unfortunately for me, the last three times I've been out have been to attend wakes and funerals. You do get lonely. You do spend a lot of time by yourself. Social media helps, there are people online that I can talk to. My kids have school, work, activities. I do get the occasional visitor, but like I said people have to get on with their lives.

It's funny, the people that I expected to be here have pretty much vanished, people I would've never guessed in a million years have been showing up to visit. I had no idea how important it would be to get a visitor to stop by just to say hello.

That's the lesson I am taking away from this. When I'm healthy again I will make sure to make time to visit people who are sick. They tell you not to go through the trouble, but that's what I'm going to do.

62 Months: keeping it interesting?

Good morning. And yeah, today is a good morning. I'm alive, and I'm driving my doctors crazy.

Just to preface, I consider myself a good patient. I follow the instructions that the doctors give me very carefully. Somehow, however, I wound up with the flu. I was diagnosed on January 14 with the flu. The doctors started me on Tamiflu, and I really believe that the medicine took the edge off the illness.

But we all know that nothing is ever easy. I came into the hospital this past Wednesday and they diagnosed me with pneumonia and admitted me right to a bed. And that's where I am right now.

I have no idea how the heck I can keep weight on my body. Between 14 January and today I've lost 18 pounds. I eat like a teenager everything I can get my hands on. Fast food, good food, pizza, cake, you name it, that's probably not the worst problem to have, but it does get a little frustrating. It can be a little trouble when you have a craving and you can't find what you're looking for.

Cheesecake. Oh do we love cheesecake, but it's not always easy to run out just grab a cheesecake at 2 o'clock in the morning. 

Anyway I have a pile of IV bags waiting to get plugged in, just thought that I would pop in here and say hello. With all this talk of flu and pneumonia, we haven't had a discussion about how my cancer is progressing or the transplant is taking ...we have to get around to that.

But I guess it's a good thing one cancer could take a backseat right?