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?

62 Months: Damned Moment of Truth

A friend of mine lost his battle with cancer over this past weekend. He was my age...just a couple of months apart. He also worked in the Downtown Wall Street area with me. 

Sad as I was to get the news, it had an additional effect on me. It was sort of a turning point. 

I woke up this morning in a different frame of mind. I really believe I've kicked this cancer to the curb. Anything that's happening to me from here on in is all part of the recovery process. My kidneys are not functioning properly: it's a result of the tacrolimus medication and the doctors are carefully adjusting my medication to get the creatinine levels back to normal. My potassium levels had been very high; they've given me medicine and a specialized diet to stop that nonsense.

I've requested physical therapy. Today, a visiting nurse will be coming to my house to evaluate me and approve me for therapy. It will be small steps at first, of course, but I've got to knock this peripheral neuropathy out of my legs or at least get strong enough to bear with it. 

The doctors who performed the transplant estimated my recovery time out to October, 2014. I'm not accepting that. I'm aiming at March, or sooner if possible. I'm gonna fight as hard as I can to get back to life as it was before cancer. And I'm going to fight in honor of my friends Jim, Barbara and all the other friends I've either lost or who are fighting cancer right along with me.

I'm a little angry. The EPA said it was ok for us to come back to work, one week after the September 11, 2001 attacks, and we resumed working down there. There are at least 10 of us who've either died or who are fighting cancer now. 

Well fuck cancer. I'm letting go of the anger. I'm letting go of the past. I'm letting go of everything bad and gearing up for the rest of the fight. 

I appreciate all the support, kindness and generosity I've received over the year and a half this battle has been going on. And I appreciate anyone who takes the time to read my thoughts and words here. ( I don't actually know if many people do).

I'll be writing a lot more often. There's going to be a lot happening.

62 Months: Beatdowns

It has been an interesting couple of weeks. A short while back I wound up in the hospital with an infection treated, I had a 103° fever. I had fever, Chills and shivers like I have never had in my life. Shivering got so bad at one point that they applied oxygen to me. Eventually they administered morphine to calm my body down. I spent about five days in the hospital until the fever was under control and the infection was being treated well. I was sent home with an IV set to finish the IV antibiotics on my own. It appears that the infection is gone.

I began to have double vision. The doctors ordered an MRI on this past Friday and today I got the results. The MRI was clear so we can assume that the double vision is being caused by all the medications I am taking. It is just something I will have to deal with for the time being.

I've had trouble with elevated potassium and creatinine levels. The creatinine levels indicate that there is a problem with my kidneys and they are working on it. I'm being infused with 1 L of Saline and dextrose every day. It takes about four hours each day so we try to get that done as soon as possible.

My appetite is pretty good however I must watch what I eat so that I don't increase potassium levels in my blood. And I have to drink as much liquids as possible. So basically for the time being it's bread and water!

The potassium levels if they get too high, can cause heart attack. I guess were going to have to keep an eye on that. I don't want to have my cancer cured only to die of something stupid like kidney failure. So I am going to behave myself the best that I can. I am under house arrest for the time being. Right now I pretty much only go out to go to the doctor offices. The doctors will tell me when it is safe for me to venture back out into the real world. Not soon enough.