Wednesday, May 3, 2017

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.

Wednesday, April 6, 2016

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.

Monday, February 29, 2016

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.

Wednesday, October 21, 2015

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

Tuesday, October 20, 2015

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.

Tuesday, April 21, 2015

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

Tuesday, April 14, 2015

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 soirĂ©e 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.