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