It's Been So Long

Here I am, well beyond my life expectancy, and still breathing. 

There are days now where I do a lot of wondering. I wonder about the so-called "plan" that God has for me. I wonder why, of all the people I went through the clinical trial with, I'm like one of five who are still alive. I wonder why this gift I was given, life, has gotten progressively worse week after week. I'm going down a big drain. That would be fine if I were swirling the drain by myself, but I'm dragging a lot of people down with me. 

I've never felt more useless in my life. I contribute very little to my family's lives. I mean, sure, I do a lot of physical stuff, driving ,food shopping and all, but there's no income derived from those things. We need income, and lots of it. The cost of getting that gift of life comes with a lot of bills. See, everything that happened to me was all related to the attacks of 9/11. I now have cancer that's in remission. I have COPD, stage 3 kidney disease, Mixed Connective Tissue Disease, (that's a dual diagnosis of rheumatoid arthritis and Lupus), and the loveliest of all, chemotherapy induced polyneuropathy. Now most times neuropathy is a condition that results in a lot of tingling in your arms, hands, legs and feet. I would pay good money to have tingling. See, in some cases, the neuropathy gets very painful. It's like a non-stop burning. Bad burning. When I was a teenager, I was playing football on the beach with a bunch of friends. I was "going long" for a pass. Some wonderful person had dumped their barbecue on the sand without putting it out. Yours truly ran through the hot coals barefoot. Lots of burns and blisters. Being a hot shot teenager, I couldn't cry in front of my friends. But boy, I wanted to cry. I ran to the water as fast as I could, but it didn't help much. However, I didn't cry, especially with the girls there. 

Well, I still don't cry in front of anyone. There are times where the burning will wake me up. If you know me, you know how hard it is to wake me up. (insert an LOL here). So I hope I've made that pain clear. It also gives me the added bonus of interfering with my balance. Ive gotten very good at taking falls. As a matter of fact, I fell hard just yesterday. I've been lucky. I somehow have avoided any serious injury from any of the falls. I'm a big enough burden to my family as it is. 

So, back to the drain. It's a big whirlpool that's sweeping up a few other people with me. People I love, people I care about. People who deserve better. I spend time wondering how things that were so go went so bad. I've tried. I lost a great career, in part because of an electronic trading system that I helped design. That system took over the NY Stock Exchange and eventually put guys like me out of business. The Exchange started in like 1792, yet I helped bring an end to a wonderful, long standing institution. I mean that sounds a little silly, but it's mostly true. 

I don't have a lot of time for self-pity, lamenting my life. There's too much to be done. Right now, I'm in the financial fight of my life. It's sick to think that someone can ruin my life with a few computer keystrokes. Just like that. I found out that the bank I thought was working with me, decided it was times up. We got a notice taped to the door that the County Sheriff's office was putting my house, our home, on the foreclosure market. And of course, my youngest daughter, my wonderful daughter, was the one to find it as she left for work early in the morning. We had been flying under the radar as far as the kids were concerned. The kids who have mostly given up a good part of their own lives to take care of us. I'm the useless one, and they are here, helping us every step of the way. And now they know that their ways of life are in trouble. They're putting a lot of faith in me, but I don't know how much I can do. One possible solution is a Chapter 13 bankruptcy. That will put a temporary stop to the foreclosure sale. We have a glimmer of hope as we might be owed a sum of money from their accident. 

It's a stretch. I mean I'm going nuts trying to figure out how to come up with the $5500 to pay the bankruptcy lawyer. Seems a little mean to charge a family who can barely afford to put food on the table that kind of money. I'm going over every possible solution but most of them aren't panning out too well. I'm what you might call desperate. I'm in such a way that instead of talking to myself, I'm writing in an online journal. Right now I'm in a horrible financial situation. I'm like $155,000 I'm debt. I mean if someone should happen to come across this sad excuse of a journal, a diary, and send me $155,000, I won't exactly turn it down. But, I'm living in the real world, the cold, cruel real world. And nobody is going to be sending me that kind of dough anytime in the near future. And "thoughts and prayers" only seems to go so far, ya know? Goodwill only counts for so much. Unfortunately, the answer to those prayers is $155,000. And please, don't ask how stupid I've been to allow myself to get that close to the drain. My mind, my brain, my intellect, well they're not functioning so well these days. A neurologist diagnosed "chemo brain", which apparently is a real affliction. For example, this 5 minute read took me the better part of an hour to write. So my head isn't on tight and every day I struggle to work on the paperwork that comes with being in trouble. 

So that's it for now. That's all I can muster with a half screwed-on skull. 

More later. This actually made me feel a little better. Meanwhile, if anyone knows someone with a couple of hundred thousand bucks lying around, please let them know I'm in deep trouble. 

Thanks for reading, if you are. 

Hope for the pain

I'm not you're typical cancer survivor. I'm not waking up every day jumping for joy, welcoming the sunrise with open arms each morning.

There's a reason or ten for that. I have a problem called Chemotherapy Induced peripheral neuropathy. It sucks.

Many times, you say neuropathy and people respond with something along the lines of, "Oh, that's the tingling, right?"

In my instance, no, it is not tingling. It's a relentless feeling of burning. Hot, fiery burning. Only you can't pull your feet out of the fire. There are days I don't want to get out of bed. Eyes open up and the pain is there, right away. Hangs out all day until I fall asleep at night. I'm lucky that way; sleep eludes a lot of neuropathy patients.

But there's more! In 2018 I found out I have Stage 3 kidney disease. Then there's the COPD diagnosis. And the last fun thing was mixed connective tissue disease. They call it that when you have more than one autoimmune disease happening to your tissue at once. For me, the two components were rheumatoid arthritis and lupus. Yayyy.

But I'm aiming to make 2019 the year I get them all under control. I'll search far and wide for any doctor who can help.

Well, we're at Step one. I found a pain management doctor who seems to think he can help with the neuropathy.

He proposes a procedure to implant a transmitter in the spine to create spinal cord Stimulation. He says there's a good chance that this could help alleviate the neuropathy.

This could change my life. Seriously.

More as I learn.

Catching Up

I just walked out of the oncologist office. I went in with some concerns, but this doctor is awesome.

I lost about 15 pounds. I explained what else has been going on and doc said, "no worries".

I have two very painful spots in my chest. They hurt to the touch, but there are no lumps. He said that the one medication I'm taking could cause inflammation. Check!

I have an open wound on my foot. Been there nearly a year. Doc asked about who is treating it and what they're doing. I told him the podiatrist has been treating it with various remedies. He said I should see an orthopedic doctor now. He told me that they could use a hyperbaric treatment. Check!

My blood work is clean. Check!

Life is good. Right now at least. Yay.

Return of the Evil

Well, it's been a fun, clean ride. But, it appears, the Cancer has poked its head out from behind the curtain to say hello.

A few weeks ago, I had a PET scan. The oncologist spotted a "shadow" on my left femur, aka the thigh bone. He ordered a follow-up MRI which revealed a new bone lesion. What's incredible to me is, the lesion is 1/16th of an inch. I don't know if you've ever seen an MRI, but to me it looks like spilled paint on the garage floor. How anyone could look at that mess and spot something 1/16th of an inch is just amazing.

Anyway, the oncologist sent me to see a radiation oncologist, Dr. Miller. Dr. Miller laid out a plan, which was 5 weeks of radiation, 5 days per week. For some reason, the oncologist balked at this plan, and asked Miller to hold off until I see the old transplant team at Hackensack hospital.  I guess he wants another set of eyes on my case. I'll see them this coming Thursday.

If all goes as planned, I should start the radiation as soon as possible, so that I'm completely done before summer kicks in. Then I'll consider renting myself out as a night light or flashlight. Keep me in mind.

Ok so that's it for now. We'll see what Thursday brings. I'll post another update if anyone is interested. Wish me luck.

62 Months: Looking behind, looking ahead

I woke up this morning feeling pretty good about things. I had my usual cocktail of 20 pills with my breakfast. I happened to tune in to NBC's "Today" Show. The hosts were interviewing a woman named Jennifer Rothschild.

Jennifer went totally blind at the age of 15. That meant she suffered a loss beyond comprehension. To be born blind is bad enough, but to have her vision taken away must have been devastating. To be able to see, and then be unable to see was like dealing with a thief in the night. But this lady isn't allowing her blindness define her. She's authored eleven books in the years since, and she's a motivational speaker who is showing the world that the human spirit can overcome nearly any obstacle.

I wish I had the talent to be a motivational speaker. I would shout to the world that cancer doesn't have to be a death sentence. Nor does it have to be something that defines you. I was quite fortunate to meet up with all the right doctors at all the right times. We took a big chance with the clinical trial that I was a part of. We basically threw the atom bomb at the cancer, and so far, so good.

The treatment didn't come without cost. I'm stuck with peripheral neuropathy. Or as some call it, Complex Regional Pain Syndrome. It's like standing in a pile of hot coals. But I still consider it a small price to pay for the life I'm leading. I have my wife, my kids, my family, and my cherished friends all supporting me. So I grin and bear it.

I think of the day that I was given the prognosis: 2, 2 1/2 years at best. That was August 2012. The funny thing was, I was diagnosed on July 13th, 2012. It was a Friday the 13th! But here it is, 2016, and I'm still here. It has to be the love and support, plus the positive attitude I was able to maintain thanks to the medical support, the family support and the love and encouragement from my friends.

Looking ahead, I'm holding out hope for a long remission. There's no cure for this cancer (Multiple Myeloma) and the blog I write it titled 62 Months because that was the prognosis for the typical Myeloma patient, according to the American Cancer Society database.

I want to do something to help others who've been diagnosed with cancer. As I said, I'm not much of a public speaker, but I'd love to hear any suggestions you might have if you happen to read this.

Love you all.

Doing the Crawl

I wish I could start this post with a happy tone. But...life goes on, and it's been difficult. I've learned to enjoy the happy moments with extra vigor because they've been so few and far between.

My son is still having difficulty recovering from his shotgun wounds. Our last hope is to get him what they call a "nerve block", which is an epidural, I believe. I'm keeping my fingers crossed because they're aren't too many options left. For some reason, the doctors have all elected to leave two of the hunks of shrapnel in there. We were to five doctors, including a general surgeon, and none of them would even consider the removal.

Another lovely surprise related to his shooting is that he's in school in Florida, where it happened. My ignorance was brought to light when we discovered that my health insurance, doesn't cover the injuries. So here come the bills for that. It did cover a small amount of the emergency room charges, but that was a drop in the bucket.

While we struggle to cover the flood of medical bills, for my oldest daughter, my son, and my own bills, I'm definitely crawling. The utilities bills don't go away, the cell phone, cable tv all became too expensive luxuries.My kids sacrifice so much and don't complain. The three of them are in school, hopefully learning how to build successful careers so they don't ever have to do the crawl. My income has become so minimal because my cancer cleaned us out, and now I'm disabled and on Social Security. Anyone who receives that kind of money knows how hard "fixed income" living is.

I've gotten some help from some kind friends who've donated to my fundraiser. It's like Christmas morning when I get notification of a donation received. It makes the load just a little lighter. I can crawl a little further. Payment arrangements with these companies is really only a temporary fix, it just means you'll have a balance that will take longer to pay off. It'd be awesome if the balance were eliminated altogether.

I'm gonna keep crawling until I learn to walk again. I'm hesitant to post these sort of pity parties, but I want to have something to look back on when I've made life good again.

I leave a link to my fundraiser on the sidebar, just in case someone wants to help out. I look forward to the day I remove that.

Like I said, you have to crawl before you walk. I'll get there.

62 Months: The Heart Hurts

This is a little bit about how my heart works.

Last night I had quite a lucid dream. I was walking with a friend through what appeared to be some form of a Disney Store. The only merchandise on display, however, was an assortment of items that I had gotten for my kids over the years. Along with my friend, I was walking with my oldest daughter. She's now 22, but in the dream I was walking with a younger version of her, holding her hand.

We wandered the aisles, talking, when I realized that my daughter had wandered off. I looked and looked, and came upon her lying in a Disney Princess Bed (if there is such a thing). She was asking me, "Please, Daddy, can I get this bed?"

I had to tell her that we couldn't get the bed, because it was too expensive. She simply said, "Oh all, right." and wandered off again. She returned a few minutes later holding a small glass figurine of Goofy, her favorite Disney character, She handed the figurine to me, and I looked at the price tag. This, I could afford, and told her as much. My memories of her are quite clear, because she smiled the way she did when she was little and said, "Thank you, Daddy."

But she never took her eyes off the bed. She stood ruffling the blankets and satin pillow. 

That's when I woke up. And I woke up very sad.

I was sad because life has gotten to the point where we're barely getting by. I'm disabled now, and on a fixed Social Security income. My heart hurts because I was once a wonderful provider. I didn't, by any means "spoil" my children. They did get occasional gifts and treats aside from those given at holidays, but now I'm struggling to afford the bare essentials.

My youngest is attending a public high school with a rather affluent student body. Barely a day goes by that one kid or another is showing up at school with a brand new car. She posted about it on Twitter and I happened to catch the Tweet. Heartache. There was a time I could have done the same for all three of my kids. Now, I could barely scrounge up the money for the tires for one of those cars.

It's what makes my heart hurt. A lot. Every night I go to bed feeling a failure. I don't fall asleep smiling too often the past three years. It's not about giving them what they want, it's about me giving them what I want to give them. Or rather, it's about me not being able to do what I want to for my kids, Reversal of fortune, so to speak.

Heartache doesn't go away with medication. I don't know what makes it go away. I just wish it would stop.

That's how my heart hurts

62 Months:Still Alive!

It's been a while since I've written here. Life has been in the way a whole lot. Mostly good things going on but some crazy things taking place.

I'm kind of proud of myself for having survived the past two or three months. I'd say that the craziest thing that occurred happened to my son, who is attending college in Florida. He was the victim of an accidental shooting. Genuinely, certifiably accidental shooting. Even the police said so. It's a long story, so I'll spare you from that. He's recovering...not quite back to form yet, but recovering.

As worldly-wise as I like to think I am, there's so much I don't know. Most importantly (and I guess relevant here) I found out the hard way, that my medical insurance didn't cover his care beyond the initial emergency care. That was a sweet good bye to some cash, that's for sure. I'm going to be 100 years old or so before I finish learning all I need to know, I guess.

My own health is pretty good. And by that I mean that nothing that's wrong with me is going to kill me at the moment. Neuropathy sucks. If you have it, you know what I mean, if you don't, I'll pray you never experience this delightful malady. I'm not too mad about it, because the treatment that brought it on saved my life. Nothing comes without a price.

I'm grouchy about 40% of the time, pleasant about 30% of the time, and asleep about 20% of the time. The other 10%, I use for eating, social media, and socializing. I hate to say I don't get out much. I have to work on the percentages.

Stay safe for now. I'm looking forward to the increase in temperatures over the next few days.

See ya.

So you had a bad day(s)

I'm sort of on a roller coaster ride the last few days. I receive a treatment called IVIG, among others. IVIG, or Intravenous Immuno-Globulin therapy, is intended to boost my immune system. My system has been very slow to develop. I was hospitalized 7 times in 2014, twice between October and the end of the year.

People respond differently to the treatment in the days after receiving it. The hospital presents me with the "Things To Look Out For" list, which includes nausea, vomiting, fatigue, pain. In my case, I've rarely experienced the nausea and vomiting, but the fatigue and pain slam me like a freight train. I have neuropathy in my legs and feet, particularly in the lower legs and feet. Neuropathy is so strange because everything from my shins down is completely numb to the touch, but they hurt like hell. When I was younger, I was playing football on the beach with some friends. Someone had dumped their barbecue grill without burying the hot coals, and without seeing them, I ran right through the coals. Well I jumped about 9000 feet into the air and screeched like an injured cat, but the damage only amounted to a bunch of second degree burns.

That's exactly the sensation I'm experiencing these days. I've often heard neuropathy described as "tingling". I'd pay cash to trade "tingling" for "fire-walking". It hurts, and it makes me very grouchy. I know that I'm difficult to live with, but I can't get anyone to shoot me. (I'd bet they would like to). 

The medication I've been prescribed can handle the pain, but then I'm useless. More so than usual. There's an extra room in the house where I've placed a bed, and that's where I go and try to hide so no one has to deal with me. I'm not actively nasty, as in I don't hunt for people to bother. But I can't spend the rest of my life doped up and gathering mold. I'm trying to find a happy medium. The right amount of pain medicine that doesn't leave me drooling and babbling.

So it's a trade off. I spend a few days in utter misery because the IVIG is producing measurable results. My "good" numbers are climbing. I get the treatment monthly now, so perhaps the numbers will get to the point where I can increase the time between infusions. That way, the family will be better able to deal with me and not take me up on the order to shoot my head off, ya know?

I eat like 3 people because of some other medications I'm taking. We'll get to that topic in my next issue. In the meantime, if anyone has any ideas or suggestions, please use the comments section, it Tweet me... @LippyJimmy

Never Say Never

On nights like this, I find myself lying awake just thinking. The past two years have given me so much to dwell upon. 

Mostly, my mind churns up financial issues, a sure-fire way to ensure anxiety and insomnia. Most of those nights, I simply deduce that no matter what I do, I will never have enough money to get ahead. Every day, I open the mail, and with it comes yet another medical bill. The bills are always at least $100, (and that's on a good day), and more often than not, they number in the thousands. I've got pretty decent health insurance, but it doesn't cover everything. The best one yet was a whopper from Hackensack University Hospital for just over $56,000. I called the billing department, sort of laughing about it, to see if there was some sort of error. There was not. 

I'm never going to be able to pay a bill that large, but if I default on that, the hospital can opt to refuse any further treatment. At least that's what I've been told. 

I don't squander the money I do have. When I budget my money, my first priority is putting food on the table. Then utilities, then I divvy up the balance to try and pay down the Mount Everest sized medical bill pile. 

I try and give my kids what I can. My oldest grew up in the period where I was making a great living. My youngest has been growing up during this era of pinching every penny. We live in an area where most people are making a great living, so my youngest is aware of what others her age have. I know it's hard for her. She's a teenager, a group that isn't always capable of rational thought, but she's been very grateful for what we do give her. I'm kind of proud of her ability to be grateful for what she does get from us. She's not aware of precisely dire things are for us, how every month we teeter on the edge of the cliff. 

So why did I title this post "Never Say Never"? I did so because the world, for us, is full of kind, generous people who've been very supportive of us. My youngest turned 16 in March. Most of her classmates are hosting extravagant "Sweet 16" parties. From January through March, I sweated and struggled with the idea that we were never going to be able to throw such a party for her. Not a good feeling for a Dad. I know there are more important things to worry about and deal with, but in the world of a 16 year old, it's damn near tragic to be denied a rite of passage like that. 

Here's where the "Never Say Never" part comes in. A very, very kind soul, who knew of our situation, remembered the days when we were first in line to write a check to help others. They helped put together a magnificent soirée at a country club where she worked. I openly wept when I was informed that the only cost to us would be a dress for my daughter to wear. The rest was given to us, free of charge. I couldn't believe that there were people out there who would do such a thing. 

My daughter soaked up every moment. She was the Princess of the evening, and loved every moment. People probably think I'm a huge crybaby. It seemed that at every other minute, I was wiping tears from my eyes. 

Not to be morbid, but there's no guarantee that I'm going to live long enough to walk my girls down the aisle. Cancer is evil that way. No guarantee that there will be a father-daughter dance at their weddings. I danced such a dance with her that evening. I didn't even bother to wipe the tears away. I just let them flow. They were tears of pure joy and love for my girl. 

Never say never. Love and kindness always find their way in. 

Alyssa Milano's Kindness

Please consider giving what you can to @lippyjimmy. This guy is special. http://t.co/msxv3dCeNU

— Alyssa Milano (@Alyssa_Milano) April 3, 2015

One of the nicest things ever done for me...

♥.@lippyjimmy is the general of my Twitter army. He has always supported us. Now it's our turn. Check out: http://t.co/msxv3dCeNU
— Alyssa Milano (@Alyssa_Milano) April 2, 2015

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.

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.