I know when I was diagnosed, I was actually so relieved to have an actual answer as to what was going on with my body, that I came home and slept like a baby that night. I knew then that a lot of my problems could and would be fixed. My body had been hurting, but I just played it off as part of growing older.
I've never really been freaked out about the cancer. I had been lucky enough to find a great primary physician who had taken the interest to find out what was wrong, and then she was able to refer me to a terrific oncologist who specializes in Multiple Myeloma. So I felt right away that I was in good hands.
While the cancer was indeed scary, I was still more concerned with my life situation. I won't lie, being out of work for so long left me practically destitute, and the thought of medical bills being added to the fray really messed with my mind. In all my years, no matter what went on in my life, I'd always been able to sleep at night. The finances did a good job of messing that up.
It's been almost a year since I was diagnosed. I'm still alive and fairly well, in part because of the great care I'm receiving from the doctors and hospital. But what's really helped me sleep at night recently has been the tremendous amount of love and support I've received, in some cases, from people who are essentially strangers, if you look at it that way.
My girl will have her dress. As a Dad, that melts my heart, and it's even better because of how it happened. I don't know what I did to deserve such kindness, but I'm forever grateful. And my Facebook family and friends took up an online fundraising campaign to help as well. The insurance only covers so much, and when a single medical bill is pretty much equivalent to one week's pay, things mount up. People sometimes feel that what they do is no big thing, but let me tell you, kindness matters. It really matters.
People have told me, time and again, that it's only fair that I be the recipient of kindness now. That it's my turn now. I'd like to think that I was generous when I could be, back in the Wall Street days. I hope that it's true because it helps me accept the kindness of others now.
It's going to stay in my mind forever.
Cancer put itself in the way of my new career, for sure. I was on track, and in training, for my next promotion at work. I lost 4 months overall, to date. But I'll get past this obstacle and get back in line for that rung in the ladder. And as I get back on my feet, I'm going to make sure that a piece of every week's pay goes to help someone in need. Until 2010, I'd never known what it was like to be someone in need, I'd always been the helper.
Now my eyes are wide open. Thank you to anyone who has offered any kindness, be it a donation, a prayer or a kind word.
It matters.
Wednesday, May 29, 2013
Thursday, May 23, 2013
62 Months: Titanic
I've found that there are so many people fighting Multiple Myeloma out there. I've been inspired by some, educated by some and encouraged by all of them. I hear stories every day of people who are living a long time with the disease. And it makes me brave.
But one thing I like about the Oncologist who is treating me is that he makes sure I understand all the aspects of Myeloma. He's told me that this particular disease frustrates medicine as a whole, and Oncologists in particular. He said the disease affects every patient differently. He also makes sure that I'm going forward with this little fight with my eyes completely opened.
Well, my understanding of the illness is still pretty limited. That's not the fault of any of the doctors I've been involved with. They try. What I've managed to grasp, however, is basic enough. My case has been described as "high risk" multiple myeloma. I just take that to mean, okay, I'm not going to live to be 100 years old. But it also doesn't mean I'm dying next week.
I have to get another stem cell transplant procedure. It's called an allogeneic transplant ( if you'd like to read about it, here's the place.) It's another weapon I can use. It's another, better chance to get better. I'm going to forget about the pump guy on the Titanic for now.
I don't care much for boats anyway.
Saturday, May 18, 2013
62 Months: Fear
Well, for the first time since this whole ordeal began, I'm scared. I'm facing a couple of decisions that I wasn't anticipating.
I could really use a big dose of courage.
I could really use a big dose of courage.
Thursday, May 9, 2013
62 Months: Getting ready to fight some more...
There isn't a lot to report today because the plan was mostly testing. Onc Doc performed a bone marrow biopsy, and again I want to mention that a bone marrow biopsy is not the horror that a lot of people, TV shows, etc might lead you to believe. For me, that Novocaine shot the dentist pops you with to numb your mouth is a lot worse.
The discussion was about potential options. I agreed to some pretty aggressive treatment back in July 2012, when I was first diagnosed. It might be paying dividends. One of the problems that complicated my situation was a chromosome abnormality, called Chromosome 17 deletion. Basically, that makes the cancer harder to treat and get under control, but also makes me high-risk. And that means the period between remission and relapse could be shorter. However, there is a chance that the aggressive course of treatment that was administered may have helped my cause.
The discussion was about potential options. I agreed to some pretty aggressive treatment back in July 2012, when I was first diagnosed. It might be paying dividends. One of the problems that complicated my situation was a chromosome abnormality, called Chromosome 17 deletion. Basically, that makes the cancer harder to treat and get under control, but also makes me high-risk. And that means the period between remission and relapse could be shorter. However, there is a chance that the aggressive course of treatment that was administered may have helped my cause.
One of the downsides of the chemo is something called Chemotherapy-Induced Peripheral Neuropathy. (CIPN). Always gotta love something with an acronym. If you've experienced neuropathy, you know that it sucks. If you haven't, the best description I can give is it feels like a whole lot of bees stinging you all at once, while you're standing in a hot BBQ. Mine has affected my legs from the knees down, and in my feet. It alternates between hurting and being numb. When it's numb, you feel like you're walking on sponge. Makes it tough to walk right. And I've never been the most graceful guy to begin with.
My Onc Doc is managing the neuropathy fairly well. He's prescribed something called Gabapentin. Gotta love a medicine that sounds like you're dribbling when you say it. It's actually an anti-seizure medicine that's also been found to treat nerve pain. I'm so reluctant to utilize narcotics. I use them only when the pain makes me nuttier than normal. And for some reason, the neuropathy is bearable most of the day, but then at night it's like someone turns the flamethrower up. So I do what I have to, day to day.
The only reason I even mention neuropathy is the discussion about the potential options. If the biopsy results are as expected, we move to the next phase. Option A is most probable, doing the allogeneic stem cell transplant. (that's the transplant which uses donor stem cells) Option B is a lifelong course of chemotherapy drugs, probably low doses of Revlimid and Velcade.
The downsides of the transplant is the risk of rejection, now known as graft vs host disease and of course the risk of infection. The Onc Doc said that this transplant is very toxic to the body at first.
The downside of the chemo regimen is that it's a guarantee that the neuropathy will not go away. Period. They'll have to do their best to manage it. And of course, there's always the risk that the chemo just flat out doesn't work.
Now this isn't going to be a situation where I'm going to have to make some dramatic life-or-death decision. I trust my doctors with my life. Literally. The team at Hackensack is going to meet (they sit down with like 15-20 doctors on a panel) and between them and my Oncologist down here in Howell, they're going to decide what course of treatment is going to serve me best and keep me around longer so that I can keep writing long notes and stupid statuses here.
I was only disappointed because he said he can't sign off on me going back to work for the time being. I'm still a little low in the blood counts, and still fighting infections. I'm good that way. I like my job and I'm about up to here with trying to entertain myself in the house. I'm not allowed out into the general public just yet, so you're all safe.
I've got my to do list. I have everything I'm going to need to get healthy, what to eat, drink etc. It's gotten me this far. I've got to avoid a few foods because I'm a wimpy allergic-to-everything patient. The Nutritionist Doc went over what I can shove into my belly, and what I can't. I'm well armed for the next battle.
I'll see the Transplant team in Hackensack University Hospital on May 16th. Stay tuned.
Sunday, May 5, 2013
Blessed
A show of kindness. People I know, people I've never met, family and good friends went out of their way to reach out and touch my life.
That is enough for me to take a deep breath, relax, go to sleep and start over again tomorrow.
That is enough for me to take a deep breath, relax, go to sleep and start over again tomorrow.
Friday, May 3, 2013
62 Months: A Pain That Really Hurts.
This is a lot longer than I typically like to write. Hopefully you'll see why, and indulge me a little.
I believe that it's human nature to believe that no matter how bad a situation is, it will all work out somehow. Whatever the obstacles may be, there are none too great to overcome. I think we're all innately optimistic.
I'm not afraid of cancer. I'm fighting it hard, and fighting it well. I have a support team beyond belief, and a medical team to match. Screw cancer. I think I'm a worthwhile opponent.
But today is a pity party.
I say that so that if this ain't your thing, I don't want you to have to suffer through it all.
I'm a father. I have three children, the youngest being 14 years old.
Last night my youngest came home from her school volleyball tournament, and it was obvious that she'd been crying. That's always "red alert" for a dad. She'd been with her mother for the tournament, since I'm still not allowed to be in with large crowds in public. In my effort not to be a bumbling idiot who would say the wrong thing to her, I asked her mother what had been the problem, maybe a bad game or something.
The answer crushed me. Absolutely devastated me.
She'd been crying on the car ride home. After the tournament, she and her classmates were chatting it up. My daughter was handed a bunch of invitations to upcoming graduation parties. (They're all graduating from the 8th grade and moving on to high school.) There is also a class Formal in a few weeks, a big party given them by the school. My girl, like so many others, does Facebook, Twitter, etc., and the girls in her class have all been posting photos of their new formal-wear dresses over the past few days.
So why was this so upsetting to her?
Because she doesn't have a dress at the moment. And she's pretty certain there isn't going to be a party for her to invite her friends to.
She's 14 years old. She is every father's dream as far as being a child. She's been an exemplary student, she's thoughtful at home, follows all the rules. Honest to God, I've never, ever had to raise my voice to this particular child. Ever. And that is the truth. She's done everything right.
She is 14 years old. These are not the tears of a greedy, selfish brat. These things are what 14 year old girls would consider important.
These are the things that break a father's heart. She's done everything she's ever been asked to do, from preschool to 8th grade. She's been an Honor Roll Student since she was old enough to actually qualify for such a thing. And she's been just as great a daughter as a student. Like I said, a father's dream.
A little background...
I was injured in 2006, which required six months of surgeries and recuperation. When I returned to my job as a Floor Trader at the NY Stock Exchange in early 2007, I could see that computer automation was taking over, essentially eliminating the need for we people. I acquired a number of additional securities licenses and credentials in the hope of making a career transition within the Securities industry.
But the layoffs came. I was out of work. Now I thought I had it all covered. I had experience and licenses and credentials that I was certain would help me find work. I had two years' salary saved, like the experts all advised. I figured it was just a matter of time until I was employed again.
I figured wrong. I was out of work from 2007 until late 2011. All the money was gone. Everything was wrong. I applied for better than 200 jobs and never got a bite from any brokerage firms I'd hoped to join. I even spent some time as an independent consultant with an insurance company. Of course, that was during the worst period in Wall Street history between the mortgage debacle that killed Lehman Brothers, Bear Stearns and Merrill Lynch, my former employer. People were choosing between life insurance and food on the table, and guess what won? I managed to eke out a little income during 2010, at one point winning an award for being #1 in Investments sales in the State of New Jersey.
But there were far more down times than up. At one point, I remember having $35 in the bank. $35. With three kids to care for. I applied for aid to feed my family. Pride is an awful thing to swallow, but need comes before ego.
I struggled. I gave up trying to find work on Wall Street, as it was apparent there was no place for me. I sought work anywhere and everywhere.
In late 2011, I was offered a position in a supermarket chain. It's a high end, gourmet company that was looking for assistant managers. While I had some experience from years ago within that industry, I never dreamed they'd view my management experience on Wall Street as valuable to them, but they did. And I was hired.
I was making 1/10th of what I did on Wall Street.
But the job came with health insurance benefits. That alone saved me $25,000 per year, which is what I paid to have my own health insurance policy for my family. Three months after I was hired, my family was covered. And my contribution was a mere $50 per week.
But the unemployment took a devastating toll. I defaulted on all my debt, including my mortgage. I fell behind, drastically on that home loan. All I focused on was feeding and caring for my children.
I thought I was going to have a chance. Although I was making so much less money than ever before, I was a dreamer. The company I work for is big on advancement and promotions. I set my sights on success. I even managed to secure a second job to help cover some bills. Tough as it was, we were moving forward.
Then came 2013. The job at the supermarket was very physical. I began to lose weight. A lot of weight. I figured, after 30 years of being a paper-pusher, my body was getting in shape, responding to the physical exertions of my new career.
10 pounds gone. Then 20. When I was hired, my job's physical exam had me weighing 267 pounds. But by April 2013, I was down to 197 pounds. And my body was beginning to hurt. Through the grace of God, I found a doctor who paid attention to the details, followed through with testing, and discovered I was stricken with a blood cancer called Multiple Myeloma. I was informed that this was a somewhat nasty cancer, which I have come to understand. I was very grateful for that medical insurance, believe me.
Chemotherapy beats the hell out of you. That's not news to anyone. I underwent a stem cell transplant this past March. That also beats the hell out of you. I've been out of work, on short-term disability benefits, since February, so that I could receive the chemotherapy necessary for the stem cell transplant. And I've been in recovery since then.
Weird how the world is, though. US Bank holds my mortgage. They've decided that now is the time they have to start the foreclosure proceedings.And the bill collectors have been on me non-stop. The phone rings constantly. I have tried everything in my power to do the right thing, and pay what I owe the best that I can. But there is no "right thing" where debt collectors are concerned. They want their money, and they want it now. One NJ debt collection firm, Pressler and Pressler, has tormented my family relentlessly. There's no negotiation, no talking to them. And despite my best efforts to work things out with US Bank, they're coming for my home. I see no way out, financially. Disability offers 80% of my regular salary. That's not a lot of money.
Which brings me back to my 14 year old. These circumstances are way beyond her comprehension. But as I said, she's a dream of a child for any dad. All my kids are. They've sacrificed, they've done without. But we've managed to remain a family. They've supported me and taken care of me as best they can.
There is nothing worse for a father than seeing his children suffer. When one is a 14 year old, even the bravest, most selfless child has a breaking point. And seeing one's classmates making happy plans for graduations, dresses and Class Night Formals, when one is left out, sure qualifies as a breaking point.
And it makes her father cry himself. A helpless failure of a father who would give his life to provide for those kids.
She has done everything she was asked to do, was supposed to do. She followed the rules to the letter. And now, when it's time for a little reward for those efforts, she's left flat.
Or so she thinks.
I don't know how I'm going to do it, but that girl of mine will have a dress. And while there will be no fancy party in a hall for her graduation, there will be something.
So why am I telling you all of this? Why am I subjecting you to this torture?
Very simple.
I know a lot of you believe in the power of prayer. Some of you even believe in miracles.
I need both. So badly.
I know there are far more pressing issues in our lives. Foreclosures, bankruptcy, yeah they're pretty demanding of my time and effort. And man, they make it hard to get rid of this damned cancer.
But there isn't a single cell in my brain that could allow me to overlook the pain that my girl is feeling.
We don't have to hold a major gala for her graduation, but she deserves something in honor of her hard work and accomplishments. If there were ever a time where a dad would want to spoil his girl a little, that time is now.
And I have nothing to offer. While I believe God has stopped listening to me a long time ago, I do think there are some of you who can offer a prayer or two that He will hear. It's somewhat selfish of me to ask, but the prayers are really for my girl. She's 14. She should have what 14 year old girls who do the right thing should have.
I can't remember the last time I cried in my bed.
I hate cancer so much.
I believe that it's human nature to believe that no matter how bad a situation is, it will all work out somehow. Whatever the obstacles may be, there are none too great to overcome. I think we're all innately optimistic.
I'm not afraid of cancer. I'm fighting it hard, and fighting it well. I have a support team beyond belief, and a medical team to match. Screw cancer. I think I'm a worthwhile opponent.
But today is a pity party.
I say that so that if this ain't your thing, I don't want you to have to suffer through it all.
I'm a father. I have three children, the youngest being 14 years old.
Last night my youngest came home from her school volleyball tournament, and it was obvious that she'd been crying. That's always "red alert" for a dad. She'd been with her mother for the tournament, since I'm still not allowed to be in with large crowds in public. In my effort not to be a bumbling idiot who would say the wrong thing to her, I asked her mother what had been the problem, maybe a bad game or something.
The answer crushed me. Absolutely devastated me.
She'd been crying on the car ride home. After the tournament, she and her classmates were chatting it up. My daughter was handed a bunch of invitations to upcoming graduation parties. (They're all graduating from the 8th grade and moving on to high school.) There is also a class Formal in a few weeks, a big party given them by the school. My girl, like so many others, does Facebook, Twitter, etc., and the girls in her class have all been posting photos of their new formal-wear dresses over the past few days.
So why was this so upsetting to her?
Because she doesn't have a dress at the moment. And she's pretty certain there isn't going to be a party for her to invite her friends to.
She's 14 years old. She is every father's dream as far as being a child. She's been an exemplary student, she's thoughtful at home, follows all the rules. Honest to God, I've never, ever had to raise my voice to this particular child. Ever. And that is the truth. She's done everything right.
She is 14 years old. These are not the tears of a greedy, selfish brat. These things are what 14 year old girls would consider important.
These are the things that break a father's heart. She's done everything she's ever been asked to do, from preschool to 8th grade. She's been an Honor Roll Student since she was old enough to actually qualify for such a thing. And she's been just as great a daughter as a student. Like I said, a father's dream.
A little background...
I was injured in 2006, which required six months of surgeries and recuperation. When I returned to my job as a Floor Trader at the NY Stock Exchange in early 2007, I could see that computer automation was taking over, essentially eliminating the need for we people. I acquired a number of additional securities licenses and credentials in the hope of making a career transition within the Securities industry.
But the layoffs came. I was out of work. Now I thought I had it all covered. I had experience and licenses and credentials that I was certain would help me find work. I had two years' salary saved, like the experts all advised. I figured it was just a matter of time until I was employed again.
I figured wrong. I was out of work from 2007 until late 2011. All the money was gone. Everything was wrong. I applied for better than 200 jobs and never got a bite from any brokerage firms I'd hoped to join. I even spent some time as an independent consultant with an insurance company. Of course, that was during the worst period in Wall Street history between the mortgage debacle that killed Lehman Brothers, Bear Stearns and Merrill Lynch, my former employer. People were choosing between life insurance and food on the table, and guess what won? I managed to eke out a little income during 2010, at one point winning an award for being #1 in Investments sales in the State of New Jersey.
But there were far more down times than up. At one point, I remember having $35 in the bank. $35. With three kids to care for. I applied for aid to feed my family. Pride is an awful thing to swallow, but need comes before ego.
I struggled. I gave up trying to find work on Wall Street, as it was apparent there was no place for me. I sought work anywhere and everywhere.
In late 2011, I was offered a position in a supermarket chain. It's a high end, gourmet company that was looking for assistant managers. While I had some experience from years ago within that industry, I never dreamed they'd view my management experience on Wall Street as valuable to them, but they did. And I was hired.
I was making 1/10th of what I did on Wall Street.
But the job came with health insurance benefits. That alone saved me $25,000 per year, which is what I paid to have my own health insurance policy for my family. Three months after I was hired, my family was covered. And my contribution was a mere $50 per week.
But the unemployment took a devastating toll. I defaulted on all my debt, including my mortgage. I fell behind, drastically on that home loan. All I focused on was feeding and caring for my children.
I thought I was going to have a chance. Although I was making so much less money than ever before, I was a dreamer. The company I work for is big on advancement and promotions. I set my sights on success. I even managed to secure a second job to help cover some bills. Tough as it was, we were moving forward.
Then came 2013. The job at the supermarket was very physical. I began to lose weight. A lot of weight. I figured, after 30 years of being a paper-pusher, my body was getting in shape, responding to the physical exertions of my new career.
10 pounds gone. Then 20. When I was hired, my job's physical exam had me weighing 267 pounds. But by April 2013, I was down to 197 pounds. And my body was beginning to hurt. Through the grace of God, I found a doctor who paid attention to the details, followed through with testing, and discovered I was stricken with a blood cancer called Multiple Myeloma. I was informed that this was a somewhat nasty cancer, which I have come to understand. I was very grateful for that medical insurance, believe me.
Chemotherapy beats the hell out of you. That's not news to anyone. I underwent a stem cell transplant this past March. That also beats the hell out of you. I've been out of work, on short-term disability benefits, since February, so that I could receive the chemotherapy necessary for the stem cell transplant. And I've been in recovery since then.
Weird how the world is, though. US Bank holds my mortgage. They've decided that now is the time they have to start the foreclosure proceedings.And the bill collectors have been on me non-stop. The phone rings constantly. I have tried everything in my power to do the right thing, and pay what I owe the best that I can. But there is no "right thing" where debt collectors are concerned. They want their money, and they want it now. One NJ debt collection firm, Pressler and Pressler, has tormented my family relentlessly. There's no negotiation, no talking to them. And despite my best efforts to work things out with US Bank, they're coming for my home. I see no way out, financially. Disability offers 80% of my regular salary. That's not a lot of money.
Which brings me back to my 14 year old. These circumstances are way beyond her comprehension. But as I said, she's a dream of a child for any dad. All my kids are. They've sacrificed, they've done without. But we've managed to remain a family. They've supported me and taken care of me as best they can.
There is nothing worse for a father than seeing his children suffer. When one is a 14 year old, even the bravest, most selfless child has a breaking point. And seeing one's classmates making happy plans for graduations, dresses and Class Night Formals, when one is left out, sure qualifies as a breaking point.
And it makes her father cry himself. A helpless failure of a father who would give his life to provide for those kids.
She has done everything she was asked to do, was supposed to do. She followed the rules to the letter. And now, when it's time for a little reward for those efforts, she's left flat.
Or so she thinks.
I don't know how I'm going to do it, but that girl of mine will have a dress. And while there will be no fancy party in a hall for her graduation, there will be something.
So why am I telling you all of this? Why am I subjecting you to this torture?
Very simple.
I know a lot of you believe in the power of prayer. Some of you even believe in miracles.
I need both. So badly.
I know there are far more pressing issues in our lives. Foreclosures, bankruptcy, yeah they're pretty demanding of my time and effort. And man, they make it hard to get rid of this damned cancer.
But there isn't a single cell in my brain that could allow me to overlook the pain that my girl is feeling.
We don't have to hold a major gala for her graduation, but she deserves something in honor of her hard work and accomplishments. If there were ever a time where a dad would want to spoil his girl a little, that time is now.
And I have nothing to offer. While I believe God has stopped listening to me a long time ago, I do think there are some of you who can offer a prayer or two that He will hear. It's somewhat selfish of me to ask, but the prayers are really for my girl. She's 14. She should have what 14 year old girls who do the right thing should have.
I can't remember the last time I cried in my bed.
I hate cancer so much.
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