Monday, December 2, 2013

62 Months: Damned Moment of Truth

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

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

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

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

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

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

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

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

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

Monday, November 25, 2013

62 Months: Beatdowns

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

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

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

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

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

Friday, November 1, 2013

62 Months: Miracles?

Im at a point in my life where I need a couple of miracles. I won't spend a lot of time rehashing the troubles. I'm just in the unique position where cancer is the very least of my problems. 

Imagine that.

Things are going ok with my recovery. I've had a few minor setbacks, and all they've done is allow me to see how incredibly astute my medical team is. They take care of me. It's going to be a few months more for things to be ok, but the medical stuff is the easy part.

The rest of the world is what I'm up against. So, yeah, I really need a couple of miracles. If you pray, send good vibes, cross your fingers, or whatever, see what you can do please?

I'm one of those people who can say, "I never saw this coming."

Monday, October 21, 2013

62 Months: Dogs

A BLT sandwich. That's what I ate tonight for dinner. And that's what brought it home for me. And my dogs. I gave them each a bite.

I don't pretend to be all heroic and smiley and brave 24 hours a day, 7 days a week.  But I complain a lot less that I used to. Traffic doesn't seem so awful. And a BLT sandwich sure tastes great. Especially when someone else makes it for you.

My priorities have changed significantly. For me, it's all about living in the now. No time for grudges. Enjoy what and who you have at the time you have them.

My ordeal has been accompanied by some serious eye-openers. I can say that no less than 300 people have stepped into my life to lend a hand, a shoulder, an ear. 300 people. Some from grammar school days, some from the old neighborhood, some from high school.

On the other hand, some 4 or 5 people really shocked me. For all intents and purposes, they've vanished. I never would have seen it coming. But when you have so many people behind you and beside you, you let it go. You enjoy yourself, and like I said, live in the moment.

Kind of like a good dog does. A dog doesn't care that you hollered 5 minutes ago, you're petting him now and that's all that matters. And a dog doesn't care too much about what's going on around him when there's a dish full of food in front of him.

Sometimes I miss the 4 or 5 people, and sometimes I let it get to me. But not for long. And besides, you can't be too grouchy with a BLT in your belly.

Tuesday, October 15, 2013

62 Months : Real Pain

While the world has put to rest many stereotypes and traditional gender roles, there are just some habits and ideas that become engrained in our make ups.

This is where cancer really hurts. I've been relatively lucky. I've endured only limited bouts of bone pain, nausea, vomiting etc. I've had a prolonged bout with peripheral neuropathy, but it's manageable, at least for me.

This cancer has inflicted hell on my family, however. I've already explained how I was out of work from 2007 until 2011. Our savings disappeared, we couldn't pay our bills. I was able to do just enough to put food on the table. And just about the time I secured gainful employment, wham! Diagnosis:Cancer.

I'd had a grand plan, albeit slightly delusional. I was going to fix it all. Bankruptcy laws are there to protect families like mine. And believe me, all things aside, declaring and leaving a bunch of blood-sucking debt collectors high and dry would soften the sting of having to declare. 

But my rescue plan isn't quite what I hoped it would be. It's going to come up short. And that's where the real pain kicks in. I have to face the fact that my family is losing our home. And while I'm fighting my own battle, my oldest daughter became very Ill. My wife endured serious injuries to her feet, yet now manages to work a job in a restaurant. My son is working. He can't go to college for the simple reason that we lost a car and he has no transportation. My youngest daughter is a high school freshman doing what she can to maintain a good grade average.

And Daddy sits, trying to build an immune system so that he can re-enter the workforce. And he watches the world crumble. My many friends have set up an online fundraising campaign site to try and help with the medical bills and life expenses, but I can't hope for that to be the fix.

My kids were never over-indulged nor spoiled. But I struggle every day to try and provide the basic needs, and I see the toll it takes. And that's what can reduce a once-proud and capable father to tears in the middle of the night.

That is the real pain of cancer for me.

Saturday, October 5, 2013

62 Months: Getting Personal

The last day or two I've been feeling a little depersonalized and abandoned. I had my scheduled consult at the Cancer Center. When you go to the Lab, you see a lot of familiar faces among the personnel. After this many visits, they too, recognize you and you get more than the polite greeting.

After the lab work, I will then proceed to the second floor offices to see the doctor. Same routine every week.

But each stage of this process has meant a different medical team. My "pre-transplant" team met with me both before the autologous and the allogeneic transplants. They walked me through every step, addressed every concern. Then I had a new case manager and nursing staff when I was admitted for the transplants. And now that I'm past the transplant, I have yet another medical team to deal with.

Maybe I'm just being a baby. Maybe the chemicals are making me softer in the head. But I feel at least there should be a moment for some sort of hand-off. Maybe say goodbye, so long, good luck or something. Perhaps introduce me to someone from the next team. 

And this isn't just some sort of emotional thing. I'm not just being whiny. Each time I meet with a new team, there is a lot of redundancy. I have to go through my whole history, my list of current medications ( and man, there are a LOT ). I have to re-list all my symptoms. Not really a big deal, as I don't really have anything else to be doing. It's just taking that feeling of familiarity out of it.

Ok rant over.

If you have a minute, could you please leave your thoughts in the comment section on this one?

Thursday, October 3, 2013

62 Months: The Waiting Game

If there's one thing that I've taken from my year with Multiple Myeloma, it's that this cancer affects every single person differently. There is no "routine case" of MM and there are no one-size-fits all treatments.

I'm in the recuperation phase of the allogeneic stem cell transplant I underwent on September 4th. I went through an autogolous transplant in March of this year, but for me there was no tandem auto transplant. My doctors went right for the allogeneic as the next step. I have a chromosomal abnormality to deal with (specifically chromosome 17 deletion) and my lead transplant doctor felt this was my best option. We had some difficulty getting approval from the insurance company for the procedure, as it is apparently still considered a "clinical trial." But the appeals worked, and we went ahead.

As far as how I feel, well I believe I weathered this transplant a lot better than the first one. I've been feeling more "healthy", and have been up and about a lot more. They went with high-dose chemotherapy, followed by the allogeneic transplant. The only thing I read about this transplant was from the MMRF website:

High-dose chemotherapy followed by an allogeneic transplant has the potential to possibly provide better long-term control of myeloma (with longer time without disease progression) than autologous transplants. However, this is a risky procedure with a high death rate due to the procedure itself (20-50%). As a result, this type of transplant is rarely performed. 

Well, so far so good. I'm alive, right? I took the chance and so far it is paying off. I'm bald as a cue-ball, my weight is below 200 lbs (not good, but I'm doing my best to fatten up). There's a lot to think about, there is a lot to be on the lookout for. I'm on it, my docs are on it and I'll be battling on.

After-transplant problems

Thursday, September 19, 2013

62 Months: Breaking Out

Yesterday I got the happy news that my white blood cell count went up to 1.8. At 1.0 you're good to go home.

My right knee, however, wasn't quite ready to let me leave. A neurologist came in and ordered a series of MRIs to figure out why my leg isn't working right. And it hurts like hell.

The food here is great. I'd say restaurant quality. The nursing staff is so absolutely compassionate, caring, gentle and attentive. So having to spend an extra day or two isn't a major problem.

I've missed my family so much. I always love that first few minutes after arrival. I can't wait for some hugs.

Now comes the next part: recuperation and recovery. I'll be under house arrest for a while. When I attended the informed consent class, I was told recovery will take 6 months to a year. We'll have to see about that.

Time to get on with living, right?

Wednesday, September 4, 2013

62 months: It begins, again

Well I have received my allogeneic stem cell transplant. My best shot at a longer survival rate! I'm feeling good in a lot of ways. My pain is very much under control...I didn't realize how lousy I was until they fixed it! 

Now the waiting game begins. I haven't felt this good in months. I don't have any blood work printouts to follow, but I'm going to have no immune system for a while. But I'll be better soon. They'll look to see if they overcame the chromosome 17 deletion, which would be huge! Longer life span still!

Best shot at a longer survival rate. Beautiful words.

Saturday, August 31, 2013

62 Months : The Next Fight

Let's get ready to rumble! I am checked into Hackensack University Hospital. The doctors have concluded that my best option for survival is to do an allogeneic stem cell transplant. The stem cells, in this case, are coming from a donor. A match has been found, and we're good to go.

I had a triple lumen catheter placed on Thursday and was admitted to the hospital on Friday to begin five days of chemo. Simultaneously, my donor is being prepped to have her stem cells harvested.

The gave me the pre-meds ( yeah I can talk medical-ese now) and then they put in IV Fludarabine and Decadron. The second one is a steroid, so I got a burst of energy. Since there's not a lot to do here, I could come clean your house or something.

This will pretty much be the routine till about Wednesday. I've got to do my part and stay somewhat active. When your blood counts drop to zero, anyone who pushes you to exercise is taking their lives in their hands, believe me! I do somewhat enjoy being lazy as it is, no less when there a good excuse to be. And I've got to eat. A lot. I have to pack on a few pounds ASAP because the chemo might make me less hungry. I remember the last transplant my mouth went numb and I lost my sense of tasted. So this like preventative fatness!

More chemo today. But that's AFTER breakfast...

Tuesday, July 9, 2013

Been a While

I've not updated in a while. Pretty much because I'm in a holding pattern. My transplant team recommended another stem cell transplant, this time utilizing stem cells from a donor. A match was found, and it seemed as though everything was in line and we were ready to get to it. 

Then came the surprise. My health insurer denied approval for the procedure. Didn't see that one coming. My doctors went through the appeal process to provide more information and try to get the insurer to be reasonable. That appeal failed. I was just notified. 

Apparently there is one more appeal. My doctor is waiting to do a phone conference today or tomorrow. He's going to do his best. 

I already had an autologous stem cell transplant. That's a transplant using my own stem cells. They did chemo, then harvested my stem cells in a procedure similar to donating platelets. Then they dosed me with another chemo drug called Melphalan. That cleaned out my bone marrow. They then infused me with my own stem cells. 

It sort of worked. But not well enough. Because I'm considered a high-risk myeloma patient, the choice next was to be the allogeneic (donor transplant). It was explained to me that this would be my best chance for survival. The insurer wants me to undergo the more common practice, which is another autologous stem cell transplant, basically repeating the first procedure. 

However, my team said that this would not be enough to take care of me. It was explained that my life expectancy would be reduced considerably using the tandem autologous transplant. 

So I'm on hold. Life goes on around me. I'm working my job. I'm in a lot of pain, but it's not hard to manage. I get by. The medical expenses are a bit rough. Medicines, co-pays, etc make it tough to keep up. I was out of work for four years and I hoped to work my butt off to try and catch up with my bills. 

US Bank has run out of patience. They're foreclosing on my home.  I'm frightened. Where will I live with my kids? I have to declare bankruptcy as well. The bills got too high. It's my only choice, but I truly feel like a loser. On July 13, it will be one year since my diagnosis. I'd hoped to be better by now, but despite everything, I'm going to fight as hard as I can to beat this cancer. Then I can work on making some miracles happen in the other aspects of my life. 

I'll keep battling till the war is won. 

Wednesday, May 29, 2013

62 Months: Kindness

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.

Thursday, May 23, 2013

62 Months: Titanic

There's so many times I just think to myself, "keep fighting, keep going and it all pays off in the end." But I always remember a sales meeting where the leader said,  "Yeah it pays to work hard, but always remember there was probably a guy manning the pumps right up until the moment Titanic sank."

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.

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.


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.

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.

Monday, April 22, 2013

Slowly But Surely

Nothing too exciting to report from here. Just following doctor's orders and behaving myself. I'm taking a lot of medicines each day but they're mostly maintenance drugs and such, no chemotherapy medicines at the moment.

Appetite is making a return, thankfully, as well as my sense of taste. It's always a good thing to be able to taste what one is stuffing one's face with, right. I haven't weighed myself lately, but I'm certain the weight is coming back on these old bones. Can't say the same for my hair! Still shiny up top! All in due time.

That's it for now!

Monday, April 15, 2013

62 Months: Parents

I talk to my parents pretty frequently these days. Mostly, we're on the phone because we live rather far apart. They've been helping me a lot more than they should have to; I'm a grown man with kids of my own. But I guess that's what parents do.

I feel sorry for my parents, having to deal with one of their kids fighting cancer. I know how I'd feel if one of mine got sick. The worst part of this whole cancer ordeal for me has been telling my parents all the details.

They're great people.

Saturday, April 13, 2013

62 Months: So what the hell is Multiple Myeloma?

Multiple Myeloma. It's cancer.

Basically it's blood cancer. It's funny that so few people I know ever even heard of it, as it is the second most common blood cancer behind non-Hodgkin's lymphoma.

Multiple myeloma is a cancer of your plasma cells, a type of white blood cell present in your bone marrow. Plasma cells normally make proteins called antibodies to help you fight infections.

In multiple myeloma, a group of plasma cells (myeloma cells) becomes cancerous and multiplies, raising the number of plasma cells to a higher than normal level. Since these cells normally make proteins (antibodies), the level of abnormal proteins in your blood also may go up. Health problems caused by multiple myeloma can affect your bones, immune system, kidneys and red blood cell count.

It's not the easiest disease to explain, as I've found out. Usually people take my answer, "It's blood cancer," at face value. But if they press, I start stumbling around with more info. Not good.

One of my closest friends heard my diagnosis and went home and started emailing me info on MELANOMA. But we let that one slide. Another lady told me she had multiple sclerosis too, so if I had any questions, I could ask her.

It's not the most well-known disease, at least in my circles.

I'd like to work on changing that.

Thursday, April 11, 2013

62 Months: Movies

I've got a lot of time on my hands now, at least for a while. There's not a lot that I'm permitted to do, so I sit around for a few hours each day looking for movies to watch on TV. I've got the DVR, so when I find pictures I'd like to see, I record them. I've been building a collection of some of my all-time favorites, and when the occasional "blues" hit me, I load up one of my go-to flicks to relax with.

Here are some of the films I consider my favorites:




Apollo 13 never fails to lift the spirits. It's worth the time just to see the ending alone!


Great Story. GREAT story. This one makes you believe in miracles.

I love this movie. Kinda old-fashioned romance story. Makes you feel like there is love out there somewhere, right? And lord knows I'm such an Alyssa Milano groupie.


OK, maybe not what you'd consider a cheer-up movie, but man it's still fun to watch.


If you've not had the chance to watch this Beatles documentary, it's such a great tribute to George Harrison. Good for the spirits, for sure.


This one puts a smile on my face every time. Not usually my style, but there is some serious talent on display in this flick.


Good for some real belly laughs. This movie has some funny people in it. Alyssa Milano and Nicky Whelan are part of the cast. That's worth the price of admission.

Well that's not all of them, but I don't want to push my luck here. I'd love to hear some of your favorites. Maybe I could add a few of them to my list.

Wednesday, April 10, 2013

April Already

I'm feeling a lot more like myself lately, but it still comes and goes. I'm having good days, great days, not so great and just flat-out bad days. I'm lucky in one respect: while I don't speak to the doctor often, when I do, he listens, empathizes and provides remedies or relief.

My only problems are mostly to be expected. I have a low hemoglobin count, as well as a low red blood cell count. My white count is still low as well, but these numbers haven't had the time to make a comeback. I'm the type of guy, if you tell me that my problems are part of the process and I just have to deal with them, that's what I do. I take my medicines and suck it up. The good thing about my doctor is, he relieves what it's possible to relieve, but tells me what can't be relieved. Make sense?


Got a new hat from my friend Cassie. I have another one around here somewhere, so when I find it I'll share a pic of that one too. Not easy finding "Multiple Myeloma Awareness" gear actually. Breast cancer stuff has become a cottage industry, but MM still needs some work. Maybe when I'm better.

Appetite is coming back. Slowly but surely. That means there's potential for a food shortage on the East Coast.

Thursday, March 28, 2013

Helping others

During my little war with cancer, I've experienced a lot of kindness, from friends, family and complete strangers. I couldn't have come this far without it.

I thought it time to pay it forward.

A good friend has a story I'll share below:

"I would like to nominate my sons, Michael and Joseph Pizzurro who are 29 and 26 years old. Mike and Joe were diagnosed with a debilitating nerve disease called giant axonal neuropathy. They reached their normal milestones as toddlers but were diagnosed with GAN when they were 8 and 5 years old. Mike and Joe exemplify what a true hero really means. They both have been through many hospitalizations and GAN has taken much function away from them. They are both mentally intact. They both are on full-time ventilators which help them breathe, eat via a g-tube for nourishment and can now only move their heads. They can no longer drive their wheelchairs. My husband and I, as well as several caregivers assist Mike and Joe with all of their activities of daily living. These young men are very brave. Even though they wish they could be “normal” they are very happy to be alive and part of the family. Mike and Joe can use a new van. The van would be used for their medical appointments and also their recreational activities. Mike and Joe have inspired their sisters to become nurses. These two young men face challenges every day and have inspired many people in their community. They always want to help others and make others happy. I am very proud of these two young men and they are my true heroes."

Please click the link below and vote every day?

Vote for Mike & Joe Pizzurro - Tampa, FL in the 2013 National Mobility Awareness Month Local Hero contest!

Thursday, March 21, 2013

Well Ain't That Boring

Somehow I felt this transplant process was going to require some heroic effort on my part. I've really not had a lot of horrible stuff to deal with.

I checked into the hospital on Day -1 and had a class to sit through. That afternoon they placed a PICC line and that was it. On Day 0 I was given a dose of Melphalan. That chemo wiped out as much cancer as possible, but took the bone marrow with it.

They then infused me with my own stem cells to start building new blood and bone marrow. And that was it! I've been coming to the Cancer Center each day. I spend about 8 hours a day getting IV medicines and fluids to keep me on the mend. But that's it. That's all I do.

I'm not suffering too much, if at all. It's like experiencing a bad flu. I'm fatigued, but I sleep well. My taste buds are shot, so my appetite is a little weak. That won't be a lasting problem. I like food too much.

I'm 6'4" and 218 pounds. Height won't change, weight will. Trust me. I have an appointment with a large pizza when I get home to my kids.

Onward and upward.

Wednesday, March 13, 2013

8 Months

8 months later, I'm here in Hackensack University Hospital awaiting my stem cell transplant. It was Friday, July 13th when I was diagnosed, which was a beautiful thing.

My appetite is ridiculous; I eat like a 17 year old. Anything I want, and I lose weight. LOSE weight. Well that fun will end when this stupid cancer gets its ass out of here, but I'm gonna enjoy it while it lasts.

Peripheral neuropathy... A few diabetics I know battle with this little treat. I got it when I came off the first phase of chemo. It hit me from the knees down, and the best I can describe it is like bee stings, lots and lots of 'em. But the docs have answers for everything. It's well under control thank God.

I had to give in and take some pain medicine the last couple of weeks. While it sucked, the bone pain is temporary. I had large doses of Neupogen to stimulate stem cells. That worked. Now the pain's laying back, not quite gone, but wearing away.

Multiple Myeloma is a scary disease, but it's nothing to be scared of. It is a disease that can be whupped. As of now, sure, there is no cure. But the way things go nowadays, there's a cure just waiting in the next doorway, right? I always think about that 62 months life expectancy. Bullshit. That's a challenge, not a sentence. I'll be boring you for a lot longer than that.

I'll check in later.

Sunday, March 10, 2013

The Next Beginning

Today I'm heading toward the next step. I'm heading to a hotel in Hasbrouck Heights NJ. I have a very early appointment at Hackensack University Hospital. It's quite far from my home so it makes sense to be up there in the morning.

Since I need a set of eyes on me during the chemo and transplant phases, my Dad has offered to take on the job as caretaker

I'll have a class tomorrow on what to expect with the chemo and transplant, and then I'll have a PICC line placed. Tuesday, the fun begins.

So for now I'm gonna eat up, do some relaxing and get ready.

Time for cancer to get outta my body.

Friday, March 8, 2013

The Next Step

Here in NJ, we're having yet another Nor'easter. It's not so bad as far as those storms go. It doesn't matter to me today, though. I have the day off. No tests, no needles, no hospitals. Nope, none for me today.

The stem cell harvest is complete. Took a little longer than planned, 5 days. You'd think being plopped in a recliner chair or 6 hours a day would be my perfect job, but it's not as fun when you can't move a muscle for those hours.

The perma-cath that had been placed became infected. I spent a week in Jersey Shore University Hospital while the team there fought the infection. I had no immune system as a result of the previous week's chemotherapy, so they were giving me Neupogen injections and IV antibiotics. The plan didn't work, so the catheter was taken out. This required the harvest to be done with a needle in each arm. The needle drawing the blood out was a large one, requiring me to sit as still as possible. Boring!

But I survived somehow. We really need to work on the quality of daytime television though. Will talk about that at another time though.

But now everything has been resolved and everything is in place for the stem cell transplant. I will hang out at home until Sunday morning. Then I will be heading up to Hackensack University Hospital. I'll get everything in order up there and then wait until Monday morning to start the stem cell transplant process. First they'll place the PICC line, then I'll get a dose of Melphalan. That should clean out as much Myeloma as possible, along with the bone marrow. I should also finish losing the rest of my hair. That's been coming out in a rather unusual pattern that's not the most stylish, bad enough that I've not even wanted to post any pictures. That's bad.

I hear Melphalan does the job, but I hear it beats you up pretty good, too. We'll see I guess.

Monday, February 25, 2013

Update time

I was scheduled to begin the stem cell harvest today, up in Hackensack University Medical Center. Right now, I'm starting my seventh day in Jersey Shore Medical Center instead. My immune system crashed, they call it "neutropenic" and to make matters more fun, I tested positive for staph infection.

So I sit here and try to get better. I'm getting a lot of IV antibiotics, Heparin, and Neupogen shots. It's kind of incredible how there are medicines for just about anything. In lay terms, Neupogen is a blood-building medication. That, to me, is very cool.

I'm not scared. So that means I'm very confident in my doctors, or completely insane. I'm going with "confident". They're on top of things, and this hospital is terrific. I know food isn't usually anybody's favorite hospital topic, but Jersey Shore Hospital has brought in real chefs, and the food is outstanding.

Ok so it's going to take a while longer, that's all.

Wednesday, January 30, 2013

So, about my life...

Today I'm going up north. I have to go to Hackensack University medical center for a whole day of pre-transplant tests. All my blood test came back with the right numbers, so we're ready for the next step. The stem cell transplant isn't any more difficult than donating platelets. It's not like having to do a bone marrow transplant, and they're using my own stem cells.

I'm actually seeing the light at the end of the tunnel here. I've heard a lot of good things from my doctors. While the chemo was rough, It was hardly unbearable. I had a few days of being sick here or there, but the care has been outstanding. I'm actually getting a little bit excited about this. I've encountered some side effects; the coolest-sounding one is peripheral neuropathy, which is just some odd pain in my legs and feet. It's like what I'd describe as bee stings. Your legs get twitchy and it's not awesome, but it's not anything too terrible. And I've had to struggle a little to keep my weight up, but of course you fix that by eating. A lot. Being that I love food, a lot, I could think of a lot worse.

I'm determined to kick this cancer, and I've had a lot of help in the fight. Things are looking so good.

Let the fun begin.

Tuesday, January 22, 2013

One Giant Leap...

...ok not that giant a leap, but good news came today.

My blood numbers weren't perfect, but they are within the right parameters. Soooo, that means I can continue to the next phase of the chemotherapy treatments, which will begin prepping my body for the first of two transplants. This one is my own stem cells ( autologous ).

I'll go through about a month of treatments. I'll be receiving Cytoxan, Dexamsthasone, Etoposide, Neupogen and Levaquin. I have no idea what the drugs will do, except make me better, so it's all good

Once that's all done, I'll go into the hospital to begin the stem cell harvest. That can be a 2 to 5 day process. Once that is done I will enter the final phase of chemotherapy treatments. That's when they'll use Melphalan on me. In addition to making me better, it'll make me baldy, too.

The final step of this phase will be the transplant of the stem cells that were harvested from me. The harvest and transplant are done through a catheter, so the process isn't much different than someone who is donating platelets.

I'm so excited to be advancing to the next step. There is a definite finish line in sight. I have to keep in mind that I'm still up against a cancer without a cure, but at the same time, I have to remember that every cure starts with one patient.

The fight goes on, and I'm thrilled for the chance to slug it out.

Monday, January 7, 2013

Odd occurrence

Tonight I can't sleep. I'm actually scared for the first time since I was diagnosed. My life span is shortening significantly because of a number of factors. But what's scaring me is the fact that I might not have enough time to get some things done.

The pain is quite bearable and manageable for me. I see so many people who are so worse off than I am. My bones in the legs are giving me trouble, swelling, some pain but mostly just unsteady. I've been Informed that I have chromosome 17 delete and this going to complicate things a little. I'll need two transplants now instead of one. My doctors, at my request, are being very forthcoming and honest with me. 62 months is looking more and more appropriate as my story's title, haha.

I just have so much to do. I want to have some sort of vacation with my kids, just us. I want to see my friend Cassie and her baby. I want to hang out in my friend Emily for a few days In Indiana. I also want to spend time with my Janice out in Indiana as well. I owe Emily and Cassie some meals and some foot massages lol. I always pay my bets off!

But honestly, tonight I'm just wimpy and scared.